Travels with Lucy

Changing times

2011-11-01T07:47:00.000-07:00

Oh, I wish I could say something jolly to start off this post. It’s been so long coming…well, I certainly wouldn’t want to depress anyone (not even me should I ever re-read it again!).

I did have a draft detailing all the hold-ups and put-downs that got me down over the past year. And I’d worked so hard on it (as also on, at least, one other blog post, part of a novel and a couple of short story intro’s), all saved on Word. But, guess what? In all the fatigue of MS, the exhaustion of outside inflences, I hadn’t “backed up” for a while…and - you’ve got it! – crash! My eight-year-old Thinkpad had the equivalent of a human heart attack, and died.

Now this was the same week my mother died of a stroke and, before that, I’d cut my hair (well, Tom had!) from hip to ear length.

In the month of September. At the beginning of August: my first live-in carer moved in, gave us all (Lucy, Tom when he was here – he’d had to give up his room – and me) claustrophobia, and re-damaged my left foot (distracted me on way to bathroom; twisted on metal threshold; a year’s healing and physio [my own version], since fall, ruined ). [Note: the carer still gives us claustrophobia. Wish he (!) had his own place nearby. My (?) mistake. We might speak of this later.]

September also demanded I: 1) fill in that wretched – oh, I wrote so much about this in the last draft! – ESA (Employment and Support Allowance) form, and 2) keep an eye on which herbs and supplements the EU’s new licensing laws (April 2011 – see THMPD [Traditional Herbal Medicinal Products Directive]) would still allow us to buy through retailers (i.e. Baldwins, where Tom is manager, and I have bought my herbs for years).

[Notes: 1) my MS nurse helped like mad with the ESA form, filling in answers and writing a report. I was put into the Support group, in the end, after the months of worry about it. And I didn’t get the threatened Medical, after … Thank you, S---. 2) I am happy to report that: at least the herbs in their raw state are available over-the-herbalist’s counter – no brand-name (God’s own?), you see, or medicinal endorsement on back of packaging. And most of the supplements, I know of/use, are still on the shelves…if with their potency weakened.]

Yep, it was a whole bad month. Preceded by a good (oxymoron coming up) bad 11 months or so. Not a good year at all, since that fall.

Just realized I haven’t mentioned my overall physical/MS state… Aha, perhaps that’s because I don’t want to engage with it, dignify it, admit it at all. Sad, isn’t it?

But, okay: I spend too much time in my armchair now; find it harder and harder to force myself out of bed in the mornings; panic too much when I’m on my own (that feels as though it stems from a physical source, and/or is purely because I am worried about being ill alone or, worse, with Lucy so that she doesn’t know what’s happening), and all-in-all, am in a much more feeble state than I used to be.

I have to say though, things might not be half so bad, if only other people were kinder.

And I don’t mean outside people. Not so much. In fact, right here, right now I will say, hats off to Anglian Home Improvements who were great when they were contracted to do home improvements for my landlord. After hearing of my situation their spokesperson wrote me a very sympathetic email, assuring me they wouldn’t contact me again. Anglian Home Improvements really do seem to be the decent lot they are portrayed to be in those “we’re making a film” ads. Thank you, guys.

The same gratitude must now go to Mulalley & Co. builders. In recent weeks, they too have shown compassion and understanding for someone who has chosen to stay at home rather than go into a Home, and who needs their “bubble” to remain calm and quiet. Mulalley: cheers to you all.

The Government, EU, and, to some extent, the local council/RSL (Registered Social Landlord [in other words, bureaucracy]) must take a lot of the blame for the stress-exacerbated progression of my MS (as also for the suffering experienced by anyone having to fill in an ESA form or go without their traditional herbal remedies, etc. ).

But, after all my rantings and dreadings of having to live, again, on a building site (as at my last address for a hellish “Regeneration” three years), at least in this home it’s stayed quiet enough, long enough, for the spiders to still enjoy their freedom to roam. (Don’t ask – but I’m down to about 30 a year!) The “Home Improvements” – so far (!) – have not been a huge problem.

I’m afraid the ‘unkindness’ of which I speak, comes (I wish it was past tense, it isn’t), mainly, from family…but, also, quite a bit, from the present carer.

Even the Care Agency (I chose to give my Direct Payments to!). This little group, which isn’t based in London and does seem to have lots of positive testimonials from clients and their relatives, decided to “punish” me, by not providing me with a “cover carer” when A. (I’ll call him ‘A.’ for the sake of his privacy) was away on his 10-day “break”. Because I hadn’t answered the ‘phone, the day proposed cover-carer rang up (at some un-appointed time). Because I’d “refused” (the word A. used to them) to take the call, as I was writing.

Well, for Heaven’s sake, did anyone listen when I said, days later, that I might have been: on the loo; sleeping; praying; receiving visitors; panicking about something other than a ‘phone call; worrying about someone else (i.e. my mother/son/sister/brother/friend), and that it was against the Law – see Equality Act, Parts 2 & 3, I believe? No, of course they didn’t.

And I probably should have made more noise about it…but, heck, I had to find another carer (which wasn’t easy but was, eventually, managed for day-time - thank you, E------ Care in SE London), and then Tom decided to stay…so we got by that way, and it was sort-of good. At least, we all three got some space!

Maybe I’ll put the name of the bad agency here. They couldn’t sue me for libel, they put the explanation for their “punishment” in writing (clever huh?) and sent it to me (caring, huh?), Umm… Never did go to Athens!

Anyway, I refuse to let this lot get me down. And I have missed my dear blogs so badly.

So, I will be jolly again. And, you know what? I think I’ll put a copy of this post (like the one about the “fall”) on all my blogs, in order to move on: write about different topics with all of this, last year’s nonsense, out of the way.

It might be the beginning of the end as far as my mortal coil (thanks, Shakespeare) is concerned, but, hey: I always meant to go about dying with dignity (do I need to say ‘naturally’?) and a smile on my face, and that’s what I intend to do.

God bless all who’ve spent time reading this.

Virginia

A fall comes before...a long silence

2011-03-29T05:30:00.000-07:00

Last August I had a fall: a slip on the bathroom floor whereby my left leg flew under the shower chair, flipped it into the air and brought it down on top of me. So that I lay there, half on the hall floor, for an hour while I waited: first for Tom to arrive from work, and second – when he didn’t at his usual time – for the panic-button people and an ambulance crew to come and pick me up.

And it was agony. And poor little Lucy (toy poodle - as if you didn’t know!), who was in her own room “resting” while I cleaned up her “mess”, remained nonchalant the whole way through: didn’t even respond to all my shouts into the alarm microphone or when the lady from the council and ambulance men finally came, and with me discovering more pain and damaged nerves (shaking leg) by the moment, caused so much commotion. In fact, I think the only time she perked up was when Tom entered the scene and she heard his voice, smelled his smell: that’s always a precursor to excitement from Lucy!

I spent two weeks sitting and sleeping in the same chair (perhaps I should have gone for x-rays but I didn’t: just smeared arnica oil on everything and took extra herbs), and dear Tom waited on me hand and foot. He had a few days off to help but when he absolutely had to go back to work, left me a coffee table covered in flasks of coffee and herb teas, and cups of tissanes and spare cups…and crisps and biscuits…and, yet again, I’d never have managed without him. What a hero!

[Note: rang social services screaming for help but found out file had been closed and had to wait for “re-allocation”. Not the first time we’ve heard that. Should make a lot of noise complaining about it. But it’s too boring. And I’ve got to think of more positive things. Or go down, mentally.]

Yep, it took two weeks to be able to get back into my profiling bed and then - what a relief -: with my legs raised, the grotesque swelling gradually reduced and it got a bit easier to move: I started staggering – “furniture-walking” with a vengeance (never daring not to be holding something) and life looked a bit more hopeful. I spent about a month buying new and different slippers, online, till I found something I could stick with (literally, to the ground?!) and now, here we are…

Well, I have to admit that fall is still having an effect: I still can’t walk brilliantly; lose my balance a lot more; feel pain where there was none, or a lot less, before and, worst of all, sometimes, feel helpless…

I write constantly but too much gets drafted only to be ignored, through fatigue or depression, and then forgotten - going nowhere… And so there’s a new yardstick: if this piece actually does get posted…well, that’ll be an improvement and maybe the other bits I prepared for blogs can follow. That would be good.

In the end, I just want to say, “I’m sorry”. For anyone else who’s had a fall (and I know there are many - some who are bed-bound as a result and develop infections). You are all in my thoughts and prayers. God bless you.

Virginia

Winner!

2009-12-02T06:19:00.000-08:00

What a joke! Normally speaking, that is, what with the MS and everything…

But, hey, right now. Just for a day or two, I’m celebrating, because I am a winner… I won the NaNoWriMo challenge to write a 50,000 word novel in 30 days. I did it. I’ve done it. And I feel really chuffed!

Oh yes – for all those who read the last post – against all the odds of MS fatigue and pain, drills and hammers as background accompaniment and the usual familial relationships to contend with (you live alone but suddenly a son decides to stay a couple of days!), I – doggedly and with “Think you can stop me?” determination - stuck to my Word document (on my trusty IBM Thinkpad), kept checking my wordcount and b***** well finished the 50,000, three days early: on Friday 27th November, 5pm! So proud!

The thing is: I haven’t finished the story, so through December I’ll be joining with lots of others in NaNoFiMo – National Novel Finishing Month!

And then there’ll be the rewrites - if I haven’t given up with it by then, the plot holes I see now are getting to me! – and, finally, lots of editing (yep, with NaNoEdMo, in March!).

I’m going to try and make it work though. End up with a proper, bona fide novel in the end. Because, for one reason, I’ve grown fond of my characters (one does have MS!) and need their lives to make sense!

So, onwards…

It’s a Middle Grade children’s novel, by the way, and this is the synopsis I wrote for my NaNo profile:

“It’s an ill wind…”

A brother and sister want their separated parents to get back together again but it’s not going to be easy: their dad's an alcoholic and their mum has a degenerative disease.

“It’s an ill wind… ” describes how each member of the family, with help from the children’s brainy school friend and a ghost from an old windmill, gets to move on with their lives – and come out smiling.

It’s not a bad ending for the friend or ghost either.

P.S. If any of you have/know someone who has MS (or other degenerative disease/problem) - and you’re/they’re not taking it already - I would urge you/them to add turmeric/curcumin (see also here ) to your/their regime. Even T. (my son who works at a herbalist’s), recognizes the improvement in my overall (physical and mental, especially, cognitive) health, since adding it to my own.

P.P.S. NaNoWriMo is well worth the effort (the Winner’s Certificate is going to look great on the wall!) – I have loved every moment (the forums are friendly and fantastically supportive) and it’s been good for me.

God willing, I’ll gladly do it again next year!

See you soon…

And for my latest trick...

2009-11-18T04:23:00.000-08:00

I’ve got progressive, severe, MS. I’m sitting on a building site (see here and here). And I’m writing a novel in 30 days (NaNoWriMo)!

P.S. Missing writing my blogs [Blogger, can I have my sidebar pics. back, please!] so I’ll post this on a couple of them and hope to see you soon.

P.P.S. Lucy is fine and good company - not a bad muse!

Hope you’re well.

So, what happened to July?

2009-08-05T08:01:00.000-07:00

So, what happened to July? Well, it was freezing, wasn’t it? At least, in London, UK, where I am: windy; cold; grey; raining, and with shake-you-up thunder storms thrown in. I didn’t have to go out but I felt for those who did. It was horrible. Depressing.

And I’m worried. Because here I am, most of the time humanly alone, not moving much and depending on one toy poodle and a couple of spiders to generate any heat, other than what comes out of my – can’t afford them – oil heaters. Honestly, who was the mad fool who, first of all moved here when things weren’t organised enough, and then decided to have the gas disconnected (I’m not allowed to have it put back unless I have a new boiler – away from the sitting-room where my bed is – installed. Mad! It took me years to get it “right” at the last address)?

It wouldn’t be so bad, but I’ve now offered to pay a local woman a few pounds a week to help me: eat when Tom’s not around; shower, etc. In other words be a kind-of “carer”. Oh boy…

You see, just after my last post here, I got a new social worker (s.w.) – after all those months! – and so, all the talk (T.!) started again about what was I going to do (because he wasn’t going to be around – wasn’t willing to be)? So, I put an ad. in “Gumtree” (classifieds online) and offered a room, and thought I’d get replies from people who wanted a bit of extra money but, most of all, just to be in London, working or studying.

But what I did get was a constant stream - from all over the world eventually - of some very good people with (often) very good CVs and references, wanting, not just the room but to, genuinely, be my carer. Excellent candidates. The thing was – oh, naive me! – they also wanted, and expected I realised when I did my research more thoroughly (thank you, Google!), around £400 per week!

What a mess.

And yet, there was one glimmer of hope: one of the respondents was a woman who lived down the road, was Catholic, had grown-up children and a dog and didn’t seem too bothered about the pittance of pay; she also thought we could be “friends”. Perfect.

T. and I arranged for her to come here when he could show her the ropes (as it were!) and, even though I was very nervous, I was going to go ahead because, at that moment, it seemed the best option (still does, really)… Well, she came early, knocked quietly – by all accounts – we didn’t hear her or answer; Lucy (not a good watch-dog as poodles are meant to be – it depends on her mood!) didn’t bark and, “feeling nervous about the new neighbourhood” apparently, my new “carer” turned back and went home!

Well, when we did speak later and she told me she was having severe dental treatment the next day, I figured she didn’t want to come and ignored her for a while. Till this week when I emailed her again. And she said she would still be pleased to be my “carer”.

But this cold weather is taking all my money. And it’s meant to be summer and it certainly doesn’t bode well for the winter…

It had to be done, if only to be polite: I talked to the new s.w. today and she did seem nice enough, but you know me, I get the heebie-jeebies, I’ve put her off for a few days while I “think about things”. (Do I tell the truth, I ask [as someone who prides herself on not having lied since the age of 18 when she vowed never to again]? Somehow, I think it might be more to do with wanting to get on with some writing before submitting to the claustrophobia, perfumes, etc. of strangers in the house.)

Ah, I’m not a nice person! But I can’t help it, I get physically sick. All I’m actually thinking is, please, no!

And T. (the initial is his choice) is throwing out his old double-bed, from his “old room” in the morning and, in the afternoon, a new single bed will arrive. He’s organised all this and paid for it and I know he has an ulterior motive (it’s not just “tidying up”). I know he really wants a live-in carer to move in. But he doesn’t admit it. And I’m sad.

July… Named after Julius Caesar (100BC-44BC) in 45BC (see Julian calendar). The consul/dictator of Rome who himself, chose to turn back from Britain (first attempt to “come, see and conquer”) when stormy weather in the Channel wrecked half his ships. It was late summer 55BC and I have read (sadly can’t find the reference) that this, probably greatest military general of all time, said he “wouldn’t want to visit such a cold country”. Good man!

Anyway, talking of Barbarians (well, Caesar was!): I’ve also had a helluva month with marauding bureaucrats!

No, not really… Well, yes: it was (oh, I hope not ‘is’) all to do, again, with those threatened “Decent Homes” improvements - c/o my user-friendly Registered Social Landlord (RSL).

And this time, because it’s bad for my health (nothing but stress, exacerbating symptoms), I’m not going to dwell on it. Only to say, that I’ve reminded my housing officer that these works are not mandatory (either by their standards or those of the European Convention on Human Rights [Article 8]) and, thank you, but I will be (am) declining their offer of same to my home.

Well, he chose to argue for a while. You know, tried to “liaise”. But I think – and hope and pray – I’ve persuaded him to leave me alone now. All will be, unintruded upon, in my bubble!

As for the writing… Well, I’m still, intermittently, working on my sci-fi (more “speculative” than science) novel and I think it’ll get there (“The End”) eventually. But, oh dear, it’s very slow going, due to all the research I must, keep stopping, to do.

What has actually been flowing – in other words, is much easier to write – is some stuff I’ve been doing on MS (not too much research needed there!). A couple of short pieces I wrote for this blog and MS – My Scene, which I’ll try to post very soon, and - more interestingly from a writing point of view - two fictional stories I thought I might contribute to the MS Society.

At the moment though, I’m not absolutely sure that’s what they are: short stories. I think at least one of them might make a novel. Ha, but who’s got time?! … I know what: I’ll try and whack one out for NaNoWriMo this November! Golly gosh, I’m always in a rush!

Yet, still maintaining that air of calm composure. Whenever Lucy’s around, anyway. Well, I try…

Ho ho ho! I’m only saying what I know the great Cesar Milan (C.M. [aka “The Dog Whisperer” (see the National Geographic Wild channel on Sky TV, etc.)]) would want me to say. And be: “Calm, assertive!” If I want to be “pack leader” in this canine/human relationship, that is.

And, of course, I do. But look, there’s the problem right there. Who did I put first in that description? The “canine”. The dog. Lucy!

That’s why I sometimes (actually, mostly when T.’s here!) have a spoilt, demanding, yapping/whining (but still gorgeous) little Lucy. And why I’m glued to Cesar (the name [note spelling], for me, is a coincidence in a post where I talk about Julius!) nearly every night. It would help if T. would listen when I try to explain the disciplines and put them into practice. But then, T. is still at the stage where he equates “having rules and boundaries” (C.M.) with lack of love. Bless him. He just wants everyone to love him and thinks they won’t if he’s firm. He’ll learn!

Suffice to say, when we’re on our own, Lucy couldn’t be a better friend – or more loving. I adore her more now than I ever did.

And there, isn’t that a nice, chirpy post for a change?!

P.S. Ah, well it was, anyway, before 30th July, when I heard/read about Debbie Purdy and her Law Lords’ court ruling, making it easier for someone to assist your suicide in Switzerland (at “Dignitas”). And now I’m depressed. And I did start to add a piece here about it but, on second thoughts, think I’ll either put said piece on MS – My Scene, or do my very best to forget it.

You all know my feelings about/opinions on ethanasia (see “The obligatory SAD piece” and elsewhere): I think it’s wrong; bad; murder (suicide, self-murder) and, therefore, a sin. I also think life in this world should, and could, be kinder so that PPMSers (like Debbie, 10% of all MSers and me) aren’t made to feel like that. No one should ever feel their life is not worth living.

Today I am thinking about warp-drive

2009-06-05T07:51:00.000-07:00

"Planets forming Pleiades". Image credit: University of California.

Today I am thinking about warp-drive. Ah, some will say, Virginia’s got into Startrek – and, to some extent, they will be right. Others, who know more about physics/astronomy, theories of relativity and quantum things, will wonder if I’m thinking of space-time and travelling, faster than the speed of light (FTL). And they too, will be right – to some extent.

But I think I am writing this, not to talk to those who think those things (there are space forums for that which I’ll come to) but to call for help to you guys who know I should be dealing more with my – MS – situation: “reality”, as Tom puts it!

With the fact that the disease is progressing, I am becoming less able all the time; and, with the fact that I still don’t have carers. You know, real depressing stuff.

Ow, it’s no good. I can’t do that. Well, not when I’m only able to live for the day, anyway. And that’s what I’m doing. I mean – in my defence – how else can I get through from one dawn to the next, without any help other than, dear, Tom, still; and with no one following up my, myriad, ’phone calls on the subject. I’m trying to keep it cheerful and, more importantly, not boring or I really will go under – FTL!

Somehow the idea of writing my novel and it becoming a success, is more feasible and, it seems to me, much more likely than the idea of having any satisfactory Sociial Services (SS) “Care” where I am now.

So, I am trying to deal with it – the situation – in the best and probably only way I know how: by writing. After all, I earned a living with it before, why not now?

I am working (with my sci-fi novel, especially) towards being able to buy a new home, in a new area where I can employ private, live-in, PA/nurses.

The most far-fetched – as in: bizarre; unbelievable; warped - thing going on here is the behaviour of SS during the last year…

Now I know I can’t be the easiest, or most popular, client to have on your books but, really, I have a right (and what worries me is how many others must be in this welfare no-man’s-land as well) to Care. And, indeed, have been referred for Care by those “in the business” several times. This is inexcusable. Just look at the “Log”:

- July ’08 – social worker (s.w..), “H.” sends me letter telling me she can no longer represent me as she has been promoted; she will allocate new s.w.; she also lists things in the home the “live-in” agency would like implemented;

- Tom and I start to put the home “right”; T. the MS nurse, Link Line (panic button) officers and I begin on the myriad ’phone calls (someone rings at least once a month);

- December 16, ’08 – new s.w. allocated: “R.”; nothing at all from R., either by ’phone or mail; more phone calls from me;

- early May ’09 – I ring last agency and request prices on private care for a few hours a week; they do not follow up;

- May 18, ’09 – still not a word from R., I ring one day (T. in the meantime “bullying” as if it’s my fault – well, I admit I’m not keen because of perfume allergy but am/was willing to try again) and a supervisor promises she will get R., my “allocated s.w.”, to ring; not a thing, right up to the present moment…

And so it will go on, I presume, until such time as they do something; T. does something; I do publish and sell a novel, or the Good Lord decides to end it.

And meanwhile, forgive me, but I’m going interplanetary - to have fun and celebrate more of God’s creation (did you know, by the way, that one of the oldest observatories in the world is at the Vatican [and, yes, Catholics can accept evolution with the Creation]?). I’ll learn what I can about astronomy (it’s great for stretching the brain!) and chat to all the self-professed “nerds” in space forums. Hopefully, then, my novel will come together.

On SPACE.com where I am registered and try to take part, I have an avatar in the form of a cartoon astronaut. I love that image. There’s just one thing missing: yep, you got it, a little poodle!

“Come on, Lucy, get your suit on, we’re off…”

P.S. Of course, I won’t be able to go and see the latest Star Trek film (I hear it’s great) so, if any of you do, and would like to tell me about it, I’d love to hear from you.

Lost - in more ways than one!

2009-04-17T09:41:00.000-07:00

[Sorry, took a while, but here’s the picture from Tom’s ‘phone (I must get a new camera!) to go with the two-posts-ago post.]

Poor little Lucy - who almost lost her life through that illness – recovering here with John Locke (played by Terry O’Quinn) - himself just back from the dead! - on the TV series (UK) Lost.

Ah well, I’d rather look to Christ’s Resurrection for my inspiration (hope you’re all having a happy Easter-time, by the way!) but, hey, I think this makes her quite a discerning poodle, don’t you?

Cover-up

2009-04-16T08:06:00.000-07:00

I wrote this post (with a different intro.) to cover up the last one, all about another illness poor Lucy had to endure. I meant this piece to be more upbeat, cheerful – it is Spring after all – maybe about my little brother and the good guy he is.

But that will have to wait because, as it happened, this ended up pretty bleak too. “The dusty bird” (as I call our new local Registered Social Landlord [RSL]) had risen up again.

And I’d been meaning to say, I wouldn’t allow things to get any worse!

Still, Lucy – praise God! – was back to fighting fit. Me? I’d have to keep fighting… Even as I was preparing to post this, I had more problems with the mythical creature.

The gas dept. of our RSL (plain English now!) just would not accept that some of us – I – choose not to have gas because “they” are such a nuisance and forced the “nuisance” of the annual gas service on me, anyway. Thus, I was preoccupied for, at least a month…

I was determined they wouldn’t come in and they had even threatened “forced entry”! (Yes, I did threaten them with legal action and did speak to human rights lawyers and the Health and Safety Executive [guess whose “health and safety” were actually at risk - and it wasn’t because of gas of which there was/is, none here!]). I won in the end (I should think so: they could see it was disconnected in the meter cupboard, outside above the dustbin cupboard near the front door!) and we (Tom) just signed one of their forms stating what I had stated all along.

So that was that. And, even a post that wasn’t meant to be about what it was eventually about, was postponed by another aspect of what it was about (namely, the – “everything’s new to us, you’re just a guinea-pig” local RSL).

Any plans I had for an immediate brighter future dissipated into a cloud of dust-motes.

The following is what I wrote the first time brother Blob was put on hold (let’s get it out of the way – and, hopefully, never come back to it: I saw how, especially, building works, can put a brick wall between you and creativity back at the last – regeneration – address).

No more SAD (Seasonal Affective Disorder) - at least for the 2008-9 winter. And no more SAD-ness from me. I state that now and you can keep reminding me of it, as needs-be. I hope they won’t. But, then again, those “Improvement” works Lucy told you about, are on their way. I’ve definitely got a hard time to come, if it’s not already here: I’ve had to make countless ‘phone calls (getting nowhere) reacting to countless paper (none of it recycled which disgusts me) missives from them – our new RSL.

They call themselves Community Housing, and, while I admit, in theory, that’s a good thing – made up as they are, mostly from tenants – it does mean they possess the three ‘e’s most guaranteed to upset the elderly and infirm: excitement; enthusiasm, and energy. Not such a good thing.

Add to that, the fact that they’re all share-holders and you see why I envisage problems further down the line: save (the properties, and rents with increases); invest (i.e. with improvements and landscaping); sell (to a Private Landlord at an all-important profit)!

And, ah, well, I might know all this and it might be driving me mad knowing it but, thanks to the ever-progressing MS and all its dis-abilities, there’s not much I can do about it. I am not on a newspaper any more but rather, stuck here, immobile and so “allergic” to noise and disruption that trying to keep them away must take precedence. Ergo: countless phone-calls and stressing from a personal point-of-view, usurp any thinking and acting on behalf of anyone else. And I hate that.

But you’ve heard enough about all this and not only here (see also Comment Column). The “work” is set to go on for five years. I doubt I will. So, let’s all just keep watching this space and I’ll do my best to get Lucy and me out, before they take me out in the proverbial box. (To that end, in the last couple of months, I’ve: kept working on “best-sellers”; put in for a house-swap [but that was the RSL and it went wrong]; started playing the lottery online, and prayed, prayed, prayed!)

With you and your support, I don’t really see I can go wrong. Thank you, guys.

As I say to Lucy: “We’ll get there!”

P.S. #1 And I end up covering up a sad post with an equally “sad” (using the vernacular) one on a different subject? Oh dear, not what I had planned. I had hoped to write a post on “Uncle (my brother) Blob”. Tell you what, I’ll try to get that in, on top of this one!

P.S. #2 I would hate you to get the impression that all I do is sit worrying about – minor – bureaucracy. I certainly don’t. In the minutes when I’m not dealing with it – or Lucy’s health, or mine (in that order!) – I’m hiding in the fictions I told you about in November (NaNoWriMo). Writing make-believe for quiet escapism and a feeling (more pretence?) of total control. It gives me something back of myself.

Down and down, round and round we go!

2009-03-31T16:14:00.000-07:00

[WARNING: if you’re not really a dog-lover you might want to ignore this one. I only put it in because I worked on it at the time – February! - and want it for my memory’s scrap-book.

Yes, February was a hard month. March was even worse. With the next few posts I aim to put those months behind us and, with Lucy, move into a better and brighter future… You’ve gotta keep trying!]

Oh my gosh, will it ever stop? What a spiral of decline Lucy and I have found ourselves caught up in. As if a black hole opened up as soon as Tom left and there was nothing we could do to get out of it because this place was it. A dark vortex where every thought brought an obstacle hurtling towards us and every movement, pure, physical pain.

We were being sucked down into it, lower each day, until we became it and our lives together just one, self-perpetuating, nightmare.

A bad place to be in, for too long.

So, what-we going to do about it?!

Well, first of all, let me tell you the tragic tale of Lucy’s latest health debacle…

With primary progressive multiple sclerosis (PPMS), my thing, all the symptoms stay pretty much the same. That is, there’s not usually anything new to deal with, it’s just the same old things, getting, progressively, worse. Every day.

But for poor Lucy, lately… Ah, it’s just been one thing after another. And all new. All different. And all alien to us (Tom and me) – who are human (!) and have never owned a dog before.

I guess it’s to do with her being pedigree and, therefore, too refined – delicate – bred from a few choice adults, as opposed to coming from tough stock, as say a mongrel might, with strong, non-incestuous parents (not that pedigrees are incestuous by choice, they’re often just closely related). Mongrels, naturally (the operative word!), are not designed (as some pedigrees are, i.e. toy poodles like Lucy) for their looks or roles as lap-dogs (for example). By natural law, then, they are more likely to have strong constitutions and remain healthy longer.

Poor Lucy, on-the-other-hand, chosen as a pedigree to ensure a good personality - which we certainly got - health-wise is the antithesis of some of the sturdier cross-breeds we see on our block…

Over the course of this blog, you’ve heard about all her other problems and the different ways we’ve tried to help (as little of the Vet as possible - I admit it - but then we don’t use doctors, other than for diagnoses, either). If we’ve been wrong ever, then I’m sorry, but we have tried – and we’ve worked hard (herbal remedies – see MS – My Scene – have to be carefully researched and do take quite a bit of preparation; but then, of course, they’re good for you and cause no side effects, so are always worth it).

Lucy is one of the family and, therefore – as much as possible – will be treated (intentional pun!) with the same respect we are (T. and I). Maybe more!

Which is relevant to the present ‘tale’ - or rather, under-the-tail - of woe.

Yep, be warned: if you’re not into hearing about all those ughy nether regions of a canine (and, Lord knows, nor would I have been, pre-getting to know Lucy [what is it they say, “All poodles are dogs but not all dogs are poodles.”? Well, quite. Perhaps I still don’t like dogs, per se – though, I concede, Lucy can’t be only good one!]), you’d better skip this next bit and move on to the end (where I hope things will become more salubrious!).

It goes like this… You know how dogs (and maybe other animals) sniff/smell each other’s behinds/bottoms? Well, that’s all (apparently – we didn’t know before this saga) to do with two little (kidney bean-sized in “toys”), what’s-called, anal sacs, which are glands filled with - what-to-us is foul-smelling - liquid to turn on, or off, other animals. I hope that’s correct. And I hope it made sense. But the thing is, where usually these sacs will empty themselves through normal defacation (and/or the groomer/vet will see to it), sometimes they don’t clear properly, get blocked, infection forms and an abcess develops. If that infection is then “allowed” to go unchecked (thereby spreading, via the blood-stream [septicaemia], throughout the body), the abcess can swell and in time, burst.

This is called anal furunculosis. And it’s what happened to poor, dear Lucy.

Looking back, I wonder if I couldn’t have spotted the signs sooner: difficulty going to the loo; itchy skin; head-shaking as if there’s some alien being inside you (well, I know that one from having infections); “attacking” and biting – just like an MSer (all right, this one!) when being annoyed at the same time as feeling pain.

But, as it was, the first time I got truly alarmed was when I saw Lucy’s whole posture change (her bottom and lower spine seemed to sag) and she felt obvious discomfort in that area, where I now understand the sacs/glands to be. (she started to chew at it). Scary stuff. I rang Tom and we both did what we could until two days later when, after leaving my lap, she left blood behind.

One torch and a magnifying-glass revealed more of what we were dealing with: not a season but this “abcess-thing”, next to the anus, with a hole in it and what looked like pus, mixed with blood, coming out of it. Very, very nasty.

At first we were all fear and panic and pity. But, sometimes, it comes out as anger with each other instead, which is silly and upsets everybody. All I know is Tom loves to remind me, that (because of my MS) I can’t really look after a dog and I know it’s true but, nevertheless, she’s here now, so let’s just get on with it…

I do all the ‘phone stuff and Tom does all the do-ing. He took her down to the Vet in the morning.

Brought her back, told me very little (so I had a day on Google!) and left for work and his - other! – home! Ah! Hard, hard, hard. Two of us again (Lucy and me) both crippled, both depending on each other – and God! – and both alone in separate rooms (it’s how she seems to want it – like a cat going off to die, I am sadly reminded).

She was in a terrible state – knocked out by lots of drugs the “man in the white coat” had - apparently, immediately - pumped into her and, without a doubt, very ill.

It was our (Tom’s and mine – and the Vet’s, I suppose!) mission now, to rid her of the infection. But with - all prescribed, all pharmaceutical - mega-anti-biotics (to kill her immune system completely)? Filled to the brim with anti-inflammatory, pain-killing and anti-dermatitis (side-effect, or did he just work out that she had that [as you know, we’d wondered.]) tablets? Bottom bathed daily in some evil (i.e. perfume) -smelling chemical solution?… I don’t think so. Not in this house.

No. Here, as in the animal world, things have to be more natural…

So, a couple of days into that (incongruous), laboratory list, still with a doped-up, not-eating poodle and following more research into the above-mentioned drugs and their attendant side-effects, I’m happy to report we took Lucy away from all that and put her on a similar herbal regime to the one I use myself against candida albicans (and did use to cure TB) – see again MS – My Scene.

I’m ‘happy’ to report it, because, here we are this evening – five days after it all began - and we have Lucy back in the sitting-room (T.’s here), bright-eyed and, not quite, bushy-tailed, but running about and asking for food/attention – even trying to sit on my lap – like she used to. As Tom says, “a nuisance [under his feet!] again!”

It’s brilliant. And, yet, one more reason to thank God for His miraculous herbs.

However, even if Lucy is truly well again and this last battle has been fought and won, it doesn’t detract from the fact that something must be done about this situation. It can’t go on, because, I know, I can’t go on – my body will not, for much longer.

So, what are we going to do about it? How are we going to heave ourselves out of this spinning abyss? We’re getting dizzy.

Well, I see a few ways we might:

- we could die (oh, to know the light and peace of Heaven!);
- we could win the Lottery (not much chance, I never do it!);
- any or all of my books (that I haven’t written/edited yet) could become best-sellers.

And there I’ll leave it, because that last one’s my favourite and the one I’m working towards, almost daily – against the odds.

Because dreams turned to goals get you out of bed in the morning. And that way we might just get out of here, away from all the Mammons, and, by God’s grace, all the way to Rome.

Where, of course, everything will be perfect!

P.S. My camera broke but there’s a picture of Lucy when she was just recovering – Elizabethan collar round her neck – watching Lost. It’s on Tom’s ‘phone and he’s obviously forgotten that I asked for it. I’ll remind him!

Keeping each other warm

2009-02-05T11:28:00.000-08:00

Boy, oh boy, this has been a hard winter hasn’t it? (Even before this week’s snow in the UK, weather-wise it’s been the worst.) Short, interminable, dark days; freezing cold. Fear of burst pipes (one upstairs) and power-cuts. Bad enough for anyone, but for an MSer alone, pretty unbearable.

Not having another human being in the house, not being able to move around or keep moving… well, a couple of times already (shivering, etc.), I’ve been afraid hypothermia was setting in; and known it was a miracle when I made it through the night.

I feel – and pray – for anyone alone and in a similar position. It’s tough.

It is my faith, as you know, keeps me going (“Be not afraid”, said Jesus, and I keep repeating the words). Praise God!

And Tom who still pops in (stays sometimes) and helps - or hinders: it’s not always easy to know the difference!

But it’s Lucy who has been, unceasingly, and unconditionally the physical friend-in-need. Gosh, it’s so true what they say about loyalty and dogs, and in a poodle’s case – certainly her’s – well, they’re just so empathetic, so caring: she seems to sense every time I’m feeling my lowest, and to know by instinct whether I need her to be loving (cheering me up, maybe funny) or absent (when she’ll go to her igloo-bed) and quiet.

When my legs hurt so much that I’m groaning, this little, curly bundle will smother them in healing licks, which sometimes astounds me for its generosity of spirit. (Don’t tell me dogs don’t come from – or go to – Heaven. I believe Lucy is truly a gift from God.) And it’s so soothing.

She also makes (horrible to think of, but weren’t toy poodles designed for “ladies” in the cold chateaus of France?), an instant, and constant, “hot-water bottle” to lie in one’s lap!

Oh yes, she’s much better now. Seems to be over her head-shaking, ear-scratching (that Thornit powder is brillant – I recommend it!) problems and hasn’t “attacked” me since we took away the “liquorice” probiotic (just a bit of possessive “You keep away!” barking when she’s with Tom sometimes). All-in-all, a much happier, healthy Lucy, to keep me company on these cold, lonely nights.

Lucy has been a best friend (and me, who never liked dogs!). She’s been great.

***

And, you know what, I’m going to cut this piece short now…

Because I’m fed up with starting to write a post I want to get out to you, only to be stopped mid-way, by something, someone (often both and to do with the home, i.e. builders, repairs, neighbours) or MS its-bloody-self.

Yep, I’m feeling p---ed off with MS right now. There’s been a pressure-sore driving me crazy when I sit; I can’t stand due to collapsing, painful legs; the bladder and bowels never cease demanding attention (as long as we’re alive, I suppose [and if it’s not mine, it’s Lucy’s!]), and with fatigue making even thinking a positive thought too tiring, sometimes, if I do try to do anything (writing included, which breaks my heart) it takes too long. Time is running out. And I want to cry all the time because I’m cold.

There!

Thank you, God, for all the good things – and there are many. Thank you, Tom, for your unwavering (joke!) support. Thank you, Lucy, for being here. And, thank you all, for encouraging me to keep going and bringing me back to life whenever my head starts to decline.

I’m going to come and lie on this couch more often.

***

P.S.

A Haiku

I wrote this for Tom (he’s doing haikus in his evening class) one snowy day, when he was already having the afternoon off to come here and help with a delivery (would you believe, a second freezer?! I must tell you about the wonderful frozen food I’ve been getting…), and I’d asked, nay begged, him to stay in the morning.

My son said he’d walk
to work, through snow and on ice,
to leave my MS.

When I read it to Tom later, he added: “Yessir, climb mountains, and a whole lot more!” So kind.

You know, I’ve witten a few haikus about MS. Maybe I should put together a collection.

Belated Christmas and New Year greetings (plus catch-up!)

2009-01-04T11:38:00.001-08:00

Oh dear. This isn’t very good is it, sending such a late Merry Christmas and Happy New Year message? But I have been thinking these things and, so often, wanted to stop and write you a post. It’s just that the whole of December (and now, beginning of January) was filled with horrible things (well, except Christmas, of course, which is, by definition, beautiful) to contend with; and I’ve only just got back any impetus to construct, rather than allow destruction. Which is what’s been going on.

So no, I haven’t been writing my magnum opus; not been climbing mountains for physio.! And, if you don’t want to hear about doom and gloom, you’d better stop reading. Because that’s how it might come across, even if I don’t feel it now.

And I do wish you all a very happy, what’s-left-of, Christmas and, most of all, peaceful New Year.

I’ve just realised how short the time is with the “twelve days of Christmas” being over on 6th January (‘inst.’!) so I think for brevity’s sake, a list is in order (which, anyway, will stop me dwelling and probably be easier for you!). Not good but here goes…

NB Bear in mind, still no word from Social Services (SS)!

- First week of December, Tom goes away for three days (somebody’s gig at Butlins, Minehead [can’t imagine anything worse, personally!]). Very difficult. Almost impossible for legs, etc. Fatigue, miserable. Didn’t speak to anyone till third night, then church friend. Brother B. – who I didn’t want to beg – apparently got impression I wanted to see if I could do it alone (no, that was last year B., things have got worse since then!).

- Lucy, very good. Had been giving her human dairy-free probiotics, now trying fancy, with herbs, designed-for-dogs culture. Seems to be going well. Also found an ear powder, highly recommended by groomers, etc. for itchy ears (mites?). So far, so much better. (Powder called “Thornit”.)

- I got into studying astronomy online. To help with my sci-fi novel! By the end of the third day I had applied to do a postgraduate certificate in science (astronomy) which could lead to an MSc if you wanted it, c/o a university in Australia. (This is the kind of thing I get up to when I’m left alone – I get so bored!) Never good at science; maths are anathema to me; don’t usually like sci-fi, but, heck, this astronomy’s fascinating (to know more of God’s fantastic creation) and I can always learn.

- Tom returns and brings with him that awful ‘flu virus that was going round. Bad chest infection. Keep away from MSers. But Virginia needs help – she’s practically immobile now. Tough, it’s either the ‘flu or no one. For a few hours then, please stick around.

- T. goes to work next day but by evening very ill. V., knowing it’s dangerous (see piece on respiratory problems in MS – My Scene), tells T. he cannot stay with her. He protests that it’s too cold at his friend’s house, he must stay. Maternal love clashes with MS common sense. If only he hadn’t left (last time he went, also got ill – same thing!). If only he still took herbs (the legal ones!). He is ill and bad-tempered.

- Five days after T’s come back and stayed, he is well again. Just as V. is starting to go down! No matter, T. is ready to party and he’s more-or-less gone, regardless.

- Right, enough of the third person!… So, there I was, as if hit by a ten-ton truck, feeling wiped out and with every MS symptom tortured and crying for relief. And there T. was, out the door (work and social life). Social Services? Might as well be non-existent – nothing, no news, no new social worker. In desperation, following one hard and sleepless night, I decided the only place I’d get the help I needed was in a care home (shows how ill I was!). So I rang the MS Nurse. And, oh dear, I wish I hadn’t now, because it’s a few weeks later, the ‘flu has long been better (nothing but herbs dear Nurse, who thought I might need anti-biotics!) and the hornets’ nest of SS has only just come to life, driving me crazy with buzzing activity and wanting to start everything again (assessment etc.). Sting, sting, sting. Every time we speak, there’s some mix-up or someone gets something wrong – or doesn’t get it at all – there’s always a sting! I want to run away.

- Good news though, just after I fell victim to T’s virus; and a huge surprise: I was accepted onto the (online) Graduate Certificate in Science (Astronomy) course. Wow! I was thrilled to bits. But slightly bothered by a nagging lack of confidence in my abilities (I really am hopeless at maths - they make me cry!) However, what an honour (Centre for Astrophysics and Supercomputing, Swinburne University, Melbourne, Australia). I decided I would work like mad – with help from brother Blob who is good at maths and science - and do as well as I could. I was excited. And still would be but, unfortunately, things have continued to go wrong. I didn’t think I could get organised in time to start in March, so have now said I’ll do the short six-week course this year and prepare for the big one, to begin 2010! Well, there’s optimism again. But the truth is really, of course, I just want to get on with my writing. That’s what’s most important. We’ll see, I’m still loving astronomy.

- And then, I think, we came up to beautiful Chrismas. T. was full of plans (as you know he loves cooking) and he planned lots of fabulous meals. (There was no doubt that he would stay here – we always said we’d be together at Christmas, wherever we were in life.) SS could be put on hold, most workmen would be on holiday (in other words, hopefully no building noise!), the neighbours here have always been good (unlike the last place), so I was looking forward to a good rest – I still felt weak from the illness. But, then again, it was the first year T. hadn’t made sure we had a religious Advent calendar, so things didn’t actually bode well. I should have known… And, although they started pleasantly enough (Christmas Eve and Day), come Boxing Day it did all gravitate downhill.

- Not only has poor T. been unhappy with all his trying to help me (and, with MS, the “job” never being done) which he lets show now, but Lucy started to attack me! Really. Hurtling out of her igloo-bed every time I moved to try to stand up or even ease a pressure sore, and, especially, if I raised my voice. Well, heck, isn’t that par-for-the-course with this wretched brain-damage (emotional lability) disease? To say nothing of T’s enjoying “winding me up”! I thought she was used to it (after all, I’m the one she comes to when she needs to relax – the one who’s actually calmest!) It didn’t make any sense. But we knew it started when she was lying in T’s room with him on the bed – “possessing” (as in “owning”) him. Was it only when he was here then? Oh, if only, but no. Sadly she has done it a few times when we’ve been alone.

- There’s no doubt about it, if she’d been an alsation or - perish the thought - a rottweiler, she’d have been put down. I could feel her razor-teeth through my slippers. We were going to take her to Battersea (though T., it has to be said, didn’t get quite as upset as me [or, as he should?] when she did this). Yet we kept giving her more chances. Decided it might be the sugar, which as liquorice and dextrose, was in the new probiotic, and took her off it. Maybe getting her spayed would be the answer? But then we read about this sometimes happening with poodles at this age, and, honestly, since Christmas Eve she’s only not attacked me one day – yesterday. Tonight she has and, apart from her, I’m physically alone. So I’m very upset.

- To add to all this (and I admit I’ve held back on some), I’ve nearly fallen down a few times recently (did I tell you about when I did, a couple of years ago and an ambulance crew had to come and pick me up – can’t get up alone, not strong enough?!). Hmm, perhaps Lucy picks up (nice pun!) on this and is therefore, insecure?!

One of the neighbours at our last address was a plump Italian woman who sang beautiful arias. Do you think she’s singing now?

That’s it. But, P.S. I’m sorry the ‘list’ idea went awry. (Just seems like a load of badly spaced, short sentences now)… Oh dear!

Happy masochist!

2008-11-25T07:46:00.000-08:00

So, there I was on a Saturday (today as I write), sitting down for a minute’s rest, when I heard myself saying to Lucy: “I think I’ll watch a film this afternoon… Yes, I think I will. I’ll pretend to be disabled!”

And the very next moment I thought: “Ha! I should put that in the blog!” And look at me now: writing; no film; more “work” – MASOCHIST!

And, you know what, I’ve been thinking I am lately – a masochist..

For instance, this month – November: well, after I mentioned it to you at the end of my last post, I did register with NaNoWriMo (National Novel Writing Month) so that’s meant writing profusely and as prolifically as possible (about 2,000 words a day), ever since, in an attempt to reach the 50,000-word goal and, more importantly, have a novel to show for it by the last day [30th instant].

Alas, that idea hasn’t quite worked for me but it could have done and, nevertheless, there have been lots of benefits from taking part…

I started off with the novel premise in my head that had been hovering for about 10 years. In the weeks leading up to the first day, I wrote out a 10,000 word outline. The night before the big beginning – Halloween – brother Blob came to dinner, Tom cooked and the intention (from where I was sitting, anyway) was to celebrate the whole NaNo extravaganza, commiserate with Blob for not actually joining in (he’d said he might weeks before), wish Tom well on his new Creative Writing course and (incongruously on a night I had deemed “literary night”) watch – and admire – a video recording of Blob’s latest punk gig (no comment!). But the main aim, of course (at least from where I was sitting, and sitting and sitting…), was to wish me luck and say “Fare thee well - we’ll be there for you!” – as I went under, hardly to be seen or heard from, for the duration!

Ho, ho, ho! Not a chance!

Well, a little bit, it went that way. But, oh, I don’t know, maybe I was tired (already? Well, I do have chronic fatigue with this MS!) and I was, definitely, a bit weepy when Blob said things like, he hadn’t known I was in pain all the time, and he couldn’t see anything wrong with euthanasia (dear Tom saved me there when he exclaimed: “Blob, haven’t I told you before: you have to leave your opinions outside the door when you come here!” Ooh, I didn’t look too good, but it did make me laugh.)!

The meal was great – good old Tom again and his culinary/hosting skills (he even had sweets ready for “Trick or treaters” – and then ate them when I said I couldn’t condone that!). Salmon curry – just to get me going (always the brain-food, don’t you know!). We played a nifty game of poker (I lost – can’t hide “tells”!). But…

Well, Blob and I talked a bit more about the novel, after Tom went to bed (he works Sat.). And I thought it was all systems go. But…

The next morning, sitting there with my tabula rasa, meant to be starting the novel-proper right there and then, well, I couldn’t get the Blob comments out of my head. Couldn’t believe there was still so much ignorance about MS, even in my own family.

And, because I’d mentioned, the night before, another book I’ve been trying to edit and get going again, Letter to a Son (written to the son “I” had adopted in 1969, mainly about Tom, the brother he’s never met, but, also, just about things in general – the way I do in this blog), I decided to go on with that (as Part Three). In other words (2,000 a day!) be a “NaNo Rebel” - as they call the non-fiction writers there. And that’s what I did…

Dropped the novel idea – at least, I thought, till I’ve finished the “memoir/journal” – and returned to the Letter.

And I was doing well (still no carers, Tom so absent, had to invest in a top-notch, 24hr-stays-hot Thermos flask; Lucy still not perfectly fit!), exhausted at times, stimulated with adrenalin pumping at others: doing well. By day eight, I had 15,000 written and was quite pleased with it (though I hated putting away the “inner editor” and was slightly concerned that I might not get time – in life – to tidy it up afterwards. Oh well, it was okay. I was on target. It was a fun thing (c. 120,000 taking part around the world; buzzing and informative forums to chat in) and just the universal vibe of writers together – great stuff!

You could hear it coming, couldn’t you?! CRASH! Bang. Wallop! Oh heck: the TV had broken at the end of October (wouldn’t you know it?!); “they” couldn’t bring a new one till mid-Nov.; Tom had to time it with a day off; I couldn’t manage without it; took “the man” a whole day to deliver and set it up!

Result: me needing time to recuperate; Tom at home (he would disagree with my use of semantics there – tough, I won’t change) for a couple of days, and lots of TV to watch! My “rest” went on and on. And then on reading a second email from Chris Baty, the founder of NaNo, well, I really wished I was being true to the spirit of the thing and writing my novel. He had so much good advice (as he does in his NaNo book) and I felt it would be great to be in tune with what he was saying. So I went back to the (science-) fiction...

And let the inner editor out.

And so, now, I’m kind-of out of the running to be a NaNo winner (no prize, just the title!) but have written easily 2,000 words every day and do have a novel coming along; will go back to the Letter; do have an idea for next year’s NaNo, and am happy, really, just to be more prolific and busy. Most of all then, I am grateful to NaNo.

So, that’s where we are. It’s not good, in terms of needing help, I suppose. But I don’t really want it (officially) and am making the most of all the time alone, writing; which is what I always wanted to do and keeps the boredom demon quiet.

And I know that’s not fair on Tom. But, hey, he gives me a hard time, I’m not going to beat myself up more over it. And, besides: what, for instance, if he was an Indian son, or Chinese, or… just a better Christian. He might be happy to help!

I guess I’ll go on like this a bit longer – while the Good Lord lets me, anyway.

And, quite honestly, be glad I’m a masochist. There’s method in my madness!

God bless.

P.S. Just said to Lucy: “Didn’t watch a film then!”

P.P.S. Not sure if I told you but also did get a freezer and microwave recently: yeah, pretty useful!

So, what haven't I been telling you?

2008-10-21T08:01:00.000-07:00

Ah well, I bet some of you guessed. All this focussing on poor Lucy - could it be allegorical?, I’ve heard the voices cry. And I have to answer, oh yes. Of course. At least half of it is a cover-up for my own sorry state – even to myself.

But, then again, it’s not really one story to tell another [allegory] but, rather, one story (Lucy’s) running parallel to another (my own). Neither of us “enjoying good health” at the moment – oh, okay, the past couple of months! Since Tom left. There, I said it. Since Tom left, Lucy and I have been going, kind-of, downhill. But hey, has anyone reached the bottom yet - crashed (there’s a word the MS Nurse likes!) and made a conscious decision to stop trying? Hell no – there’s a light at the top of that hill and, I hope with Lucy following, I’m still aiming for it. Even if, only metaphorically!

And so, what have you got now? Well, to be honest, two cripples, limping (Tom trod on Lucy the other day and ripped another [he’s done it before - Vet says: “common accident”!] long nail from her paw (oh, muchos blood!)), and I – on top of my normal spastic gait – have a twisted foot after rushing after Tom – who had whisked L. to the Vet the next morning without a coat or carrier – and tripping over the metal threshold of the kitchen door! Lucy’s head is still “shaking” (see previous post), and I, who have also developed asthmatic or COPD problems and nearly died the other week, haven’t had a shower for… a while.

We do not have carers. Nor even a social worker (did I tell you how “H.” wrote me a letter, in July, telling me that due to her promotion [manager] she could no longer be my s.w. but that no one has taken over or will get on with it when I call? Heck, that should be a whole newspaper article one day – and shame on me for not doing it yet.)

The trouble is, as you know (and so do they!), I can’t tolerate “carers” (I prefer the name “helpers” – no body cares) beause of their perfumes and my Multi Chemical Sensitivity (MCS) . I wish I could sue Procter and Gamble [Ariel/Bold washing powders; etc.] for a start!). You know, I wouldn’t be writing now – or any time – if I was having to breathe that in all day. I’d be in a much worse mess, physically and mentally.

The problems with not having them (carers - see how annoying that word gets?), of course, are that: it’s much harder for me physically (that’s not an oxymoron with above) and might be impossible one day; I have to spend more time humanly alone – and nowadays that seems to cause panic and asthma; Lucy misses Tom and gets spoiled when he’s here so that she’s even sadder when he goes again (ditto me?!), and the worst thing: Tom is desperate to get rid of the whole schibang (my situation – me), ergo, he’s getting mean.

And there’s a boy who started off as a saint. Really. Always the kindest person (as child and adult) anyone could wish to meet. It’s the tragedy of MS and diseases like it - where no one gets better nor ever will (degenerative) - that truly, the rewards for any care-givers are invisible. If they don’t have a religious faith they will not see that their efforts are appreciated but only feel impotent as the patient’s condition worsens. And it will be soul-destroying. (No wonder in this secular society of ours euthanasia is being so touted as the right way to [pun] go!)…

Ah, but what if the patient were actually smiling? If not on the outside then inside, filled with joy? Who’s to judge whether anyone – no matter how hopeless their state seems to be – because of, and with, their own beliefs, might not be perfectly content (as long as comfortable) to leave this world and move on to the next? In an atheist’s language: to be dying. No one can know that isn’t how it is – on the inside. Happy!

And that is why euthanasia is so wrong. And why a care-giver should always have hope.

And so one tries! Surrounded as I am by the paintings and statues of the Christian tradition – reminders of the family we strive to be near and the Heaven we long to be home in, one day. I try to be a witness to their assistance in my struggles and to keep smiling – visibly, to show my gratitude to Tom and convince him of the value of his help and prove I don’t mind.

But, of course, this is MS. With all it’s emotional lability (which, literally, is brain-damage) and it ain’t always pretty! In fact it can be positively nasty: laughing/crying for all the wrong reasons; neurotic; panicky; quick to explode in temper (pain doesn’t help!); loud/timid/exceptionally nervous; insecure; anxious; afraid. It goes on and it’s difficult for anyone to deal with. It is often unrecognisable, even to the patient – in this case to me.

As someone who does have a faith, this, can only be the work of the Enemy.

To others unjustified, it leaves you looking like a hypocrite, feeling guilty, and very alone.

This is multiple sclerosis, in all it’s sclerotic glory: eating away at the essence of who you are and maybe finishing only when there’s nothing left of worth.

Except what God can find in your intrinsic dignity and the prayer you leave behind on the silent air-waves.

I guess what I’m trying to say – in case you thought I’d lost it and got my blogs mixed up (I do have a quiet one called Pure Catholic)! – is that, no matter what happens to me - or how - no matter if poor, little Lucy has to go and live somewhere else because I can’t cope (but I’ll do whatever I can to prevent that!), then this will have been worth while.

Tom should be a saint, for how much he’s tried. (Oh yes, and last night, as he cooked another of my favourite fish curries, I sensed all would be well when we were discussing – as one does – the media and verbal engineering, and he told me [I paraphrase] that a NIB he read stated (allegedly!): “When this country was religious, people used to care for each other; now, in the modern age, nobody does…” – as if to say, there is no religion any more. God has disappeared as being an old-fashioned figment of our imaginations. No one believes. And Tom was incensed by this, by the message it put across: “I’d like to ask them to imagine a society where, truly, there is no religion. Can you imagine the anarchy and nihilism then? Oh I think,” he continued, “they’d have to admit, there are a lot of religious people now!” Good point, I thought. Clever… Yes, I see a lot of hope for Tom!)

And I am looking forward – though I don’t long for it/need it hastened – to the end, which, I believe, will be a beginning. No worries when I’m gone.

***

Right, I’m off to work on the MS blog for a bit – the “MonSter” having finally got me! And I might even try to write the novel I meant to write (NaNoWriMo in November!) so I’ll be away for a while.

But, even if I never come back, know it’ll be all right. And I love you.

God bless.

Virginia

Luc(k)y we threw those drops away!

2008-09-07T11:18:00.000-07:00

Fortuitous or blessed? Well, I know which I believe – especially after all the prayer that went with it – but anyway, phew, that was a good decision, to get rid of the vet’s ointment for Lucy. Anti-biotics and steroids! Hah!

It should have been easy, would have been for me alone with my ingrained antipathy towards these drugs – as I’ve said over and over, I’d never give them to humans – but, when it comes to Lucy, I have an adversary in the house (when he’s in the house!): Tom. And against him I have to continually be strong.

Oh, he only wants the best for our little canine friend, but sadly – and badly in my opinion – he doesn’t have the confidence to realise he might know better than a vet. Not in all things related to animals, no of course not - just as with people-doctors, when it comes to anatomy and surgery, for example, I believe we should bow at their feet. But pharmaceuticals? No. You see, again just as with doctors, they haven’t studied chemistry and don’t really know about these things, except, like us, through their own experience. To a certain extent they have to trust the drug companies. I don’t blame the vets or doctors for side-effects. But Tom and I know about these things – from experience – and have learnt. And, not only that, but Tom has worked in a herbalist for fifteen years - I have used herbal remedies as long. I do think, in this context, it has to be possible that we are better qualified than vets and doctors. (E.g. as chickweed out-did hydrocortisone on my eczema/psoriasis - much to the astonishment of GP/neurologist/relatives.)

And the reason I think Tom’s lack of confidence is ‘bad’? Because I don’t see the reason for it [apart from things like genetics which is too tedious to go into here, and alcohol which he hasn’t given up yet!] And it kind-of breaks my heart.

The thing is, that, after all that – and pouring the stuff into Lucy’s ears at the surgery, against my instructions over the ‘phone but, presumably, with Tom’s polite acquiescense – the vet had made completely the wrong diagnosis. And, consequently, prescribed a dangerously unnecessary “poison”.

When I spoke to A. (the vet) in the middle of the consultation, I had asked him to do a culture test so that, before prescribing, we might know the exact cause of Lucy’s itching/inflamed ears and, therefore, the correct (if any) measures to take. Well, it took over two weeks to get the result from, in the end, a receptionist (we’d have long finished the course of drugs if we’d used them) and, guess what? No bacteria. No yeast. Not even any mites. No, that “Canaural” (as it is called; note: ‘prednisolone’ [one of the ingredients] is a steroid) would have been nothing but detrimental to Lucy’s well-being! What a nonsense. [And even worse, when I consider the cost – we had to pay – and the fact that you had to specifically request said test. How many would not get this done through lack of funds or ignorance of such procedures and, so, not be able to help their pets? This really upsets me and is, largely, why I’m writing now.] It looked – just as I knew it might – as though Lucy had an allergy.

So, a referral was made to a skin specialist (more money for vets and insurance companies – yes, Lucy is insured) but, of course, first (with the help of more research and, again, our own experiences) we are trying to find the culprit/s ourselves!

And – as with us – the immediate concern is with food (“You are what you eat!”). Now, because we already had L. on a (dry kibble) hypo-allergenic diet, this meant looking, even more closely, at individual ingredients. And that’s where we are at the moment: trying a new brand of food (from Burns Pet Nutrition – great web site full of helpful info.; friendly staff at end of phone), minus beet pulp, with even less meat protein and plus a lot more oils (vegetable and fish).

Beet pulp! Used as a fibre (apparently!). And renowned, in my research circles, for causing just the sorts of ear problems (which later added violent head-shaking) as we’ve been experiencing – suffering – with Lucy. I am every excited about the, now lack of beet pulp, going into L’s system!

What was it Hannibal (George Peppard) famously said in “The A Team”? “I love it when a plan comes together!” Well, ditto! There’s nothing I like better than looking at a problem and finding a solution or, seen from another angle, turning chaos into order. These are the challenges I thrive on (hence my own diet and herbal regime I suppose [see MS – My Scene]).

And I have to say – a couple of weeks after the change - so far, so good (Lucy loves the taste of Burns’ main food and treats, and is scratching less already). It bodes well, I think…

P.S. The picture shows Lucy after a trip to the groomer's. And yep, that is my knee!

Talk therapy

2008-07-28T08:22:00.000-07:00

[New title added, intro edited, 21st October.]

Sometimes, while I talk, Lucy gazes into my face, listening. In exactly the same way I know Charley must have done with Steinbeck (Travels with Charley). And nothing could feel more right.

No human could muster such eye contact. No man’s ears twitch with such eagerness to hear. And no one show quite so much enthusiasm as a poodle when the tempo rises and empathy shares - when they feel the same adrenalin rush as you.

There is no greater friend. Nor confidante. And maybe it’s true that it is only the tone they respond to, but, in a poodle’s case anyway, there certainly do seem to be a lot of tones/sounds they remember – and not all of them self-serving! Indeed, it appears to be the words themselves – at least for Lucy – which serve as the key to memory and retrieval of the correct response.

Words like: “Kibble”; “dinner-time”; “fresh water”; well, of course, she knows those well. And: “bed-time” (which she enjoys); “toys”. But: “Excuse me!” and she moves herself away when I’m trying to walk? Recognising when we say “she” and are talking about her (looking up, tail wagging, ears pulled back [floppy ears can’t ‘prick up’!] to attention)? These things amaze us.

Oh heck, I’ve always known she can speak English. She just chooses not to, most of the time!

Anyway, I’ve been thinking, lately, about the way I talk to Lucy. For a couple of reasons: 1) because if I didn’t I’d be talking to the walls and/or outloud to Jesus (what, I don’t do that already?!), and 2) it suddenly struck me that Tom doesn’t.

That is, he uses sounds and not words when addressing Lucy. Now I asked him about this, and his reply left me speechless:

“Our [his and Lucy’s] relationship is special on a primeval level!”

Oh, of course he was laughing. It was tongue-in-cheek and meant specifically to annoy me (the Darwinian thing, as well as reminder that humans normally talk to humans!), but really…

Our poor, little poodle has been unwell lately. Not surprising when, following three weeks of nerve-jangling builders’ noise upstairs, her favourite family member (and food-provider), Tom, left home. (To say nothing of “Mummy”’s ever-progressing multiple sclerosis [PPMS] – bound to have an effect.) Her security and routine were undermined, and it wasn’t long before the emotional upset revealed itself in physical malady.

First it was messes – on the carpet. Not even trying to hit the “toilet-tray” (f’s & u; p&p [do we need to name them?] – difficult, and dangerous [falls], for me to clean up).

Then, her second "season" which seemed to go on and on (three weeks – and, yes, I am reconsidering spaying). It exhausted even me (empathy, and worry about males in the “’hood” [canine]!).

And finally, before the estrus (that’s what they call it, the very bloody bit) was even over, with defences down, she was pounced upon by an ear infection: bacteria and yeast - they don’t come much nastier, or more parasitical, than those two hoodlums!

Itching and scratching. Itching and scratching. Out came the loathed Elizabethan collar and in (to the body) went the increased garlic; on (to the flesh) went the calendular (marigold – antiseptic, strongly anti-fungal/itch and healing) ointment. But it was unceasing - drove us all crazy – and was, of course, most distressing for Lucy.

A visit to the Vet was reluctantly arranged and off went Tom with sad, toy poodle in tow (carrier). But not before a ‘phone call from me to lay down the groundwork (“absolutely, no steroids”)!

Well, of course, that was completely ineffective, because the rotten Vet – who obviously hadn’t received my message or heard it from Tom (?!) - apparently, poured his bully-boy anti-biotics/steroids straight into Lucy’s ears. And then suffered the verbal wrath of Yours truly, straight down the ‘phone into his! I was furious (see MS – My Scene for why I wouldn’t give steroids or anti-biotics [except in an emergency] to my worst enemy, let alone - like Lucy - my best friend).

Anyway, she came home, the poison (did I mean potion?) went in the bin, and off we went with incensed/increased vigour on our herbal attack.

For an anti-inflammatory we used chamomile essential oil (also anti-fungal). We mixed that with garlic (anti-biotic) oil and based them both in extra-virgin olive oil (antiseptic/healing). It may have taken longer than prescription pharmaceuticals to see results, but dear, litle Lucy is perfectly well now (a couple of weeks later), without side effects and we I know, without her immune-system being compromised (take note, however, things were a bit smelly!). Thank God for herbs. (By the way, while we’re at it: eyebright, not only for your eyes but also for dogs’ - excellent, even in conjunctivitis).

And this is where I get back to the issue at hand: ‘talking’ to Lucy and, by extension, all animals because of my conviction that talk-therapy (as I bet all MSers agree) is a prime healer. At the very least, it will promote endorphins to camouflage pain.

Ergo, when Lucy scratched, I would say: “Lucy, please STOP scratching, you know it makes things worse.” But Tom would shout: “OY!” Where I call: “Come on, Little One!” Tom will whistle, shrilly, as if she’s an alsation outside. And, when I sense stress, soothing: “Don’t worry, it’ll be all right.” Tom… blows raspberries, then puts on drum and bass!

And so on. And you-know-what? This is exactly the way I did it bringing Tom up, as a single parent (heck, I even taught him to read and write by the age of three!). It works…

When Tom was a baby, I went into hospital for a week and he went to a foster-family to stay. He had recently been in hospital himself with pneumonia and I had gone for a “rest” (like a rock-star!). Anyway, while he was at this other house he developed another bad cold – everyone (i.e. the family themselves, the social worker) - thought he should stay there till he was better (I think they’d all thought I’d be away longer) but I said no. Our place was far from luxury, it wasn’t even carpeted or very warm but I just felt that it was the being separated from what he knew best and – in his case – his own birth-mother that was causing the upset, so we brought him home. I talked to him none-stop, he slept in my bed and he was better within days, it was wonderful. I have never been more sure of the power of love than I was then. And I will never forget it.

And so I apply the same logic to Lucy and the discourse shall continue. With time, God willing, she’ll get used to the new routine (is there one?!) and settle down.

But, here’s the thing, am I really writing about my chatter to them or their helping me by letting me chatter? The more I think about it the more it seems I’m the one should be saying, “Thank you.” After all, by talking to and worrying about Tom and Lucy, my mind has been taken off myself.

Mahatma Gandhi (1869-1948) said: “The best way to find yourself is to lose yourself in the service of others.”

Oh, how true.

Bloomin' poodles!

2008-07-07T07:18:00.000-07:00

Just in case some of you were wondering whether I was even aware it’s summer – that last post being so (literally) cold and under the weather - I thought I’d present you with a bouquet of chrysanthemums, full of good cheer and bonhomie.

Because that’s exactly what chrysanthemums stand for in the language of flowers: cheerfulness and to tell someone, “You’re a wonderful friend.”

Which is why Lucy thought they were for her!

Have a great summer! (Oh and, yes, I do know chrysanthemums bloom naturally in the autumn, but, well, the way the world is, and they’re so sunny. [Plus: I can’t get to the roses at the bottom of our garden!])

P.S. Fellow-MSers, if you can’t keep cool just be cool – that’s all that matters!

Credits (!):pictures and blogging by Virginia; picture editing by Tom.

Virginia is such a heroine!

2008-06-30T09:17:00.000-07:00

No, not really. Obviously. Never. It’s just that some of you will remember the post I put in entitled, ‘Tom is such a hero...’ and this, relating back to that piece, is where I show how even then, actually, I wasn’t doing too bad a job either…

You see, that tribute to my gallant son, was all about a power-cut. And how he trudged home one night shortly after it, laden down with one Army Survival Kit (and a few other things for Lucy) that his poor I-can’t-cope-with-freezing cold-no coffee-first-thing (or from him: “neurotic”) mother ordered after vowing never to go through that hell again.

And hell, to me, would be cold. (Most of you know, I’m sure, that the body thermostat of an MSer is completely defunct. Which means that we’re all either suffering from too much heat [often manufactured by and only inside our own bodies] or shivering from a cold no one else necessarily feels. It follows, of course, that any real extreme in climatic temperature causes us much discomfort and, often, downright embarrassment.)

Hot and dry for me is best (I felt light as air in Italy when Tom and I were there a few summers ago). Cold and damp is, life-threateningly (Candida Albicans – see MS – My Scene [Oct. 07]) worst.

Anyway, as I explained in ‘Tom is…’ I got rid of the gas supply in this place years ago (various reasons – not least, the disruption and stress caused by the [don’t be libellous!] council gas maintenance operatives.!) and ever since have kept warm and dry with, all-electric, heaters, a de-humidifier, air-purifier and fan (the last for when there’s too much heat obviously, i.e. July!). Very expensive. Not good in that I’m abetting the depletion of the earth’s natural resources. But, I’m afraid, for me – at this stage in the MS where I can hardly move/exercise – vital. A power-cut (especially that last one, in the month of January, starting before dawn and lasting eight hours), without Tom being an absolute hero, could well have killed me (please everyone keep an eye on your elderly/infirm relatives and neighours – at all times).

So - never getting over it - I thought, I did my research (Google!) and I (?!) came up with: the afore-mentioned, life-saving, Army Survival Kit (gas-cartridge heater, cooker and lamp - even ‘recommended’ for use in power-cuts!). Bellisimo! I felt relatively (as long as I could work it!) safe and self-sufficient. No more to be afraid of the dreaded black-out/blood-freeze of eratic modernity.

It was the best £50 I ever spent.

But guess what? Everyone (Tom, his colleagues [the day the heavy box arrived at his office] and brother, Blob, all laughed at me! Laughed!

Hah! At me, a poor, skinny, immobile MSer, trying to plan ahead, pre-empt, [to quote the boy-scouts] “Be prepared!” for the future.

All right, not very optimistic. But, realistic? Oh yes. And sometimes optimism must give way to realism

Because guess who wasn’t laughing on Sunday, June 8, when it happened again? And guess who – nearly – was?!

Some of you probably caught it in the news: three hours (for some 12!), following a fire at an EDF sub-station, no power for a large part of south-east London. And I bet some of you lovely empathising friends of Travels thought of us. Lucy and me, struggling away in the thick of it all (I mean the MS as well of course!). Thank you – it’s always good to think of you at these times.

Anyway, mercy. The Good Lord had guided Tom here, late, the night before and he was up and dealing with it all, and a hero one more terrific time, before you could say: “Oh shit!”

I had coffee within moments, the large calor-gas fire (the original) was lit and the little lamp sent out a warming, family-in-a-crisis-loving-each-other glow over the whole scene.

Lucy even came running up to my bed first-thing and licked my face as if she hadn’t seen me for weeks (bless her, she must have sensed things weren’t right!). Then, in her element, she lay in the middle of the floor and our legs as Tom and I sat chatting (?!), awaiting the return of the anti-social (computers/TV, etc.) electricity.

So all-in-all it was quite a lovely power-cut! No wonder we all harbour a secret (?) yearning for rustic simplicity (and I bet I’m not the only blogger who’d like to “time-travel back” to writing with a feather quill and oil-lamp/candle!).

Well, there, we made it. The reason I feel free to title this post, ‘Virginia is such a heroine!’. We, alone, know quite a few people who wished they had had our brilliant survival kit. So, for all of you, for the future (in case you haven’t got one), here’s the link to the Army Surplus site I went to.

Be safe!

Oh and P.S. the irony of the whole thing: I don’t have the strength in my fingers to operate any of it now. Thank God for Tom (or, as he says, “a strong carer”!).

The day we owned a castle [or: 'Castles in the air - but why not?']

2008-06-19T06:56:00.000-07:00

TOM’S IMPRESSION OF “CASTELLO ********” [Original photos and names withdrawn as permission for use not given – see last post.]

It was a Friday. What a day! What excitement - for hours and hours. No one was allowed to spoil it. A blanket ban went out on any bad news, depressed behaviour and/or negative thinking.

No barking or whining would be tolerated - either from human (Tom’s day off) or animal - and any occurrence of same would render the culprit liable to banishment from the kingdom. They would be deemed unworthy.

For that day (at least in diggle-daggle flights of fancy), I owned a castle.

Now I hope, dear friend, you know I’m not stupid. Cracking-up, given the circumstances of MS and - apart from Lucy - too much time spent physically alone? Well maybe. You’d be forgiven for thinking that. A little unrealistic sometimes? Too optimistic? Oh yes, definitely, thank God! (They’re good qualities aren’t they?) But stupid? No. I’m pretty sure, not.

No. I “owned” a castle, because I saw one on an Italian Real Estate site (“**** ** *****”.com), costing [quote]: ‘Euro € 0.00 Approx US Dollars $ 0.00’. FREE!

And it was so beautiful (is – it’s still there!) and in my very favourite part of the world – Umbria. Near Gubbio where Tom and I visited once when staying in Rome, because it had become my favourite place in brochures.

Well, what was I bound to think?

No, no, I’m not stupid (remember?!). I know that just because something is wrongly priced doesn’t mean you can have it at that price [though I’m sure the law has changed since I worked in shops, many, many moons ago]. Tom - who, of course, works in retail - was quick, despite my “ban”, to point that out.

But there’s always hope, right? And there are always miracles (oh, there are!).

And, at the very least, there are opportunities. This was what I call a God-given opportunity for day-dream, escapism from the pain and tedium of an MS life (and why I knew I was justified in calling this blog ‘Travels’ with Lucy’). And I grasped it.

This beautiful, fabulous “Castello ********” was built (c. AD 900) for me! I would send them an inquiring email, before making an offer. I needed a plan.

Well, by now, Lucy, and even Tom, were beginning to enjoy the “buzz”. It was a change to see “Mummy” exhilerated. She was even walking without complaining, almost marching. Regal, confident. It was reminiscent of when she launched herself out the door, business-suit on, briefcase in hand to quizz some politician somewhere. In the old days. Pre-forced diagnosis and enforced resignation. There was still life. And determination.

Lucy, of course, hadn’t known that time, but she was happy to see her owners happy. And benefiting – everyone kept giving her Kibble and forgiving her every misdeed. Mummy, especially, kept cheering her on: “Lucy, we own a castle!” “Oh. Lucy, you’ll love running around there with all your friends!” “We might even throw you scraps from the table!” (Something we’d never do in reality!).

And so it went on. It was fun.

And it grew. I got an instant reply to my email: ‘Grazie’. My message was copied and it would be sent to the local (Perugia) estate agents (“*** *** *****”). I worked on the ‘what we would do with it’ plan and decided to forward the details of same on the Monday. If I hadn’t by then been turned down flat.

***

Is it me? Is it MS? Is it other people wanting to burst your bubble? Or, is it just life, that won’t let these good times (even imagined) go on for any time? I don’t know. Probably the fatigue thing again, or the spasm I wrote about, or household worries; but, anyway, something got in the way and a week or so passed without me going any further with my castle ambition.

Perhaps it was just the recognition that this situation was so far removed from the dream.

However – not to put a good man down – the estate agents did send a brochure, with a note inviting me to visit and view. And, quietly, in a corner did quote a price. No reference to the former real estate site where il castello was absolutely free. Just a price, pure and simple, no fuss, no fanfare or decoration – hardly in keeping with the aristocratic stature of the property – naked and ultra-modern: Euro € 4000,000!

Ha ha! Just over £3000,000 [3 million]. Oh well...

And yet, here I am again (weeks later now), dreaming still. Because, what good, life without it? At the very least, as human beings, we must hope to always be able to imagine. It’s the only way we might change things and, God willing, make life better for someone.

And besides it’s still available, and still – on the first site - beguilingly, free!

So, what would I do with a castle? This castle in particular, because it is the one I have “chosen” and pictured people inhabiting.

Well, let’s face it, it would make a perfect Retreat. But, rather than giving it straight to the Church, what I would love to do first would be to turn it into a Residential Home. For, not only people with MS but anyone physically disabled. If that’s practical.

We’d have to have a lift installed to reach every floor, and special bathrooms with walk-in showers and so on; hoists and what-have-you for those that needed them and perhaps a gym with gentle exercising equipment. Oh, and, of course, a pool - outdoor probably, there’s plenty of room. Next to the al fresco area where we’ll eat outside during the long summer days and share vino in the sunset evenings.

There would be nurses in abundance and lots of assistants (aka “carers”!), at least one for each resident.

And we would have tutors coming in, and an art room, and everyone would be encouraged to make the most of their talents. How could they fail to be inspired when looking down from their hill, all they could see, all around, would be the heaven-sent beauty of the Umbrian countryside? Oh, I think the art-work created here would say it all. What an investment!

Ah, and maybe I forgot to mention it because it’s so obvious to me: my absolute prime task? To renovate that fabulous, little chapel. [Ed.: sadly, the chapel not so obvious in Tom’s picture!]

And find a lovely, local priest to celebrate Mass.

Ho ho, Lucy and I are ready to move in. I know Tom and his friends will help.

All we need now is an altruistic billionaire to share the vision and we’re home.

P.S. If it really isn’t a practical idea for the physically disabled, then I think I would start a Retreat. For anyone in need of some quiet time with God.

It never rains...

2008-06-01T07:09:00.000-07:00

…but it pours!

On everyone. Sooner or later, able-bodied, disabled, at some point the skys will open and down it will come: the torrential downpour. Unceasing.

Or so it seems, when the trouble starts!

I don’t know if it’s stopped now. There appears to be a break in the clouds and I can’t hear that silent hum of the liquid shroud between Heaven and earth. If I open the curtains – which I won’t, it takes too much energy! – I might see the birds skipping around gathering worms; I might notice a puddle evaporating in the mid-day sun.

But I’m wet and cold. Sodden from too many things going wrong, one after another, too long. And I’m exhausted. It’s going to take a while – and a lot of good things happening (?!) – to put even a glimmer of hope back into my milieu. I won’t look for morsels yet!

***

The next thing to dampen my, already flagging, spirits (after Tom’s departure and last speaking to you) was that my lap-top died!

Can you imagine? First my son and virtual carer deserts me for healthier pastures, and then my virtual friends (you!) just vanish from my black-box cyber-world. Suddenly. As if slamming doors in my face. It was horrible. And, but for the Good Lord above and dear, little Lucy, I’d have felt totally bereft. Agh!

And then followed at least three weeks of me (a technologically incompetent MSer) trying to learn as much as I needed (but lots more!) about how computers work, especially lap-tops, and what made the Internet tick.

Oh hell, it drained me. Talk about stressful! (I expect a few of you know what I’m talking about!)

But I got there. I got there – by myself. With only a little bit of physical help – when he was here and I could get him to – from Tom.

And I’m proud of myself – thank you, God! – because Tom would have had me saving up for a new lap-top, but I already had an old IBM ThinkPad in the other room (now Lucy’s bedroom) which I hadn’t used as it wasn’t wireless-friendly without an ethernet cable. Well, I loved that ThimkPad, even in the days I only used Word. So I thought about it. And I Googled (with a bit of fiddling and patience I could, for short periods, use the now-defunct one). And, I spoke to the BT Yahoo technicians in India and heard about RAMs and memory and Yahoo Toolbar, etc.. And, sure enough, there it was, I’d found the answer: use an ethernet cable with a load more RAMs!… More Googling (research!) and after a nice man in America showed me (video!) how to install more memory, and where to get it, Crucial.com became my life-line – and saved me! Suddenly it was all systems go – again.

Well nearly. There were all the loose ends – like passwords to be re-set and millions of Windows updates to go in and Yahoo Toolbar and Bookmarks to break-down about. I’d become obsessed (while, at the same time, quite knowledgeable – comparitively!) but it was done. Now I just had to stop being nervous of it going wrong again, thaw out and REST!

Ah-ha but the downpour was relentless.

All the time (not helped by stress, of course) my MS symptoms were worsening. My legs were (are) in agony and I was being left alone far more than I had been before Tom went. He still came/comes to help, morning and evening. And he stays nearly half the nights of the week. But: what was/am I going to do about “care”? Who was/is going to look after me/Lucy? These questions won’t go away and are giving me, nearly, sleepless nights, causing some panic breathing problems and driving me mad! How can you make a decision you don’t want to make? I just keep on prevaricating, keep on rebelling and, by the grace of God – so far – keep on keeping on.

And looking for distractions!

[Oh, and I suppose I should mention here, that a woman from a live-in care agency did come somewhere amidst all that mayhem to do an assessment. But, just like my MS nurse, all she kept saying was: “You’re very thin.” To which I’m supposed to say what? “You’re very fat!” “I’m sorry if it makes you uncomfortable (the latter has used the “painfully” adverb). In the event, I gave my usual, annoyed, retort: “So?” And proceeded to explain I was also: very strong (!); very well apart from MS (never get colds, etc.!); only going to use herbs, anyway, if I did have cancer or something; easier to pick up if I fall, and, most of all, not bothered! It was awful. I don’t want to talk about it. And, so far (social worker had one more week’s holiday and I haven’t done anything) no one has followed anything up. Basta! (‘Enough!’ in Italian. I probably don’t need to tell you that any more - I’m always using it!)]

Distractions (and who can blame me?)…

I wanted to write but wasn’t quite ready (I thought) to take on Blogger. My head was full of technical stuff, and even though I could see I could really get into it, empathised with the enthusiasm of Bill Gates, Google and co., I knew it could also make me insane. That certainly wouldn’t be my “bag”! No, I was put here to write. I went to forums.

But two things happened there over the next couple of weeks: 1) I wrote too much, especially in Writers’ Forum, which I realised later should have been here (although I love that place and have been very grateful to them for existing), and 2) I fell in love!

No. Not really. Well, yes. But…

Oh, I can see what happened. Tom had gone, no other family members (well, dear Blob tries!) were getting in touch; friends I might have had I hadn’t encouraged so were long ago invisible, and I was feeling unloved and uncared for. (It’s a dichotomy – and an irony: I have always wanted to be alone to write but now that the MS is bad… Oh dear!). Anyway, so along comes Fred (fictional name!) from Texas (on the Catholic social networking site) and woos me with five days and nights of constant messages, emotigrams and poems, so that in the end I almost wondered if a relationship was possible.

Me! Who’d chosen to be celibate and remain so, in 1986! Ridiculous.

Plus, I was so busy returning his correspondence (he seemed to expect it, even though I’d explained about the MS and fatigue) I was neglecting everything else. It had to stop. So I stopped it – on the fifth day.

But, oh boy, I missed that warm, sunny feeling for a while afterwards!

And here I am.

But, oh wait, one more thing: Important. I nearly forgot. Something else that went wrong and froze me in my tracks. You remember the ‘fun’ piece I said I was writing ages ago? Well, it was about a castle. A particular castle. And I needed permission to show photographs and print URLs. And I didn’t get it. Hah! Well, what a surprise!

So, please forgive me, I’m going to put it in anyway, with those things taken out and a painting by Tom! It’s still fun to me but you can ignore it if you like. Probably best to do so.

Right, I think I’ve caught up now – I’ve missed you guys.

Oh no. One sad note: Len, the man next door I wrote about, died. A couple of weeks after that post. Of a stroke. Bless him. I’m glad his worries are over and he’ll be with his dear wife again. May he rest in peace.

Time to move on

2008-04-17T06:47:00.000-07:00

In the spring-time. What better time? New beginnings, new growth... Oh yeah, yeah, etc. etc.! It’s April.

But it’s April! Ruined by man just as surely as he would ruin God Himself, if he could (planet Earth is a good start). And the whole month has become thrall to Mammon, god of this world.

Tax forms for all our American friends [I’ve seen people asking for prayers for help with those things!] and gosh-knows-what financial hiccoughing in this country [it’s all keeping me very busy – one claim and check-up for Social Services after another! (Defeats the object if you ask me, the stress is awful!)].

And - I expect you guessed it - Tom left! Deserted, like a rat from a sinking ship. Gone. Off to sow his wild oats (oh, I hope not!), living with an old school-friend (known him 16 years – nothing strange for Tom!) down the road.

So for me, of course, everything seems wrong. Incongruous. Surreal. I’m having a bit of a bad time.

And it’s getting warm in my horrible west-facing sitting-room (I told Tom to bring a compass when we came to look round, he didn’t realise the necessity!) which is making things [MS not good in heat] even harder.

However... God is with us, Pope Benedict XVI is in America as I write (thereby cultivating what his predecessor, John Paul II called a “spring-time in the Church”), and I have joined a great Catholic social networking site (4marks). So I’m making new friends. All is not lost.

Tom comes and helps (and eats, showers, does his washing, stays nights!) and tries to keep it as familiar as he can. He even comes in the mornings when he doesn’t stay the previous night to make me coffee and feed Lucy. Ah, he truly is a good lad – I must stop shouting at him!

But I’m missing him like crazy. And Lucy is [and no, we haven’t got over those builders upstairs yet – I know my nerves have been very unsettled and dear L. is not quite as good as she has been]. I hate his friend for kicking the poor dad into sheltered housing and using the house for rent-paying lodgers!

Still, back to ‘all is not lost’!

I just needed to get my writing self back on track to feel right. So that’s what this is about. I hope you will bear with me and, when it comes, be tolerant of that nasty, pointless, self-pity thing.

I’m going to aim to get a spring into my step for spring. Yes I am!

Thank you for keeping me going and caring (especially you, Daffy). It’d be a lot worse without my blogger friends!

Time to move on...

P.S. I forgot to mention (probably because she’s on another week’s leave and I’m trying not to think about it), H., my social worker, has been working towards getting me live-in care (after all – perhaps she read this blog! [the Kent Care Home looked very nice but she and I agreed: “not yet”]). I’m meant to be filling-in a Registration Form. But, oh, I don’t know. I guess I’ll have to do something – for Tom’s sake.

P.P.S. For the record (mine?!) Tom left on Saturday, April 5th 2008!

Magic boxes [last post of three!]

2008-04-05T10:10:00.000-07:00

They keep disappearing, the boxes that my son has been packing and stacking in his room, oh, for over a year.

Just a couple at a time. But I’m sure there were about a dozen at one point – maybe more. Now only four sit on his bed where they’re easier to lift than prostrating themselves on the floor. He had a hernia a few years ago, learnt his lesson with the weights. His mates didn’t even come and see him after the op.

And he’s lifted these cardboard hold-alls, taken them, obviously, while I haven’t been looking.

Either that or there’s a magician in the house, or the elves keep coming in the night to help him get away. Urge him on his way. Away from the mother who has outstayed her welcome in this world. No more use. Only a dead weight to carry.

Better a hernia from a box of belongings than a break-down from a life of missed longings in servitude.

Oh, I understand. Nothing planned. You don’t set out to be a cripple in a wheelchair. It just happens.

And isn’t it always the way that it’s easier for the victim/patient in these cases? Because they have no choice but to learn to accept, adapt and maybe even find some good in the situation? Beyond the imagination of the other.

So that the carer just feels its wrongness compared to the rest of the world. As they see it - in their own very tired eyes.

And their friends - in this culture of “choices” - espouse materialism and a freedom from responsibility [while frantically chasing the imagined pot of gold at the end of an invisible rainbow].

Following the way of the Self.

Which is what my dear son has been hearing and learning to believe in. Because it’s more comfortable than living with the sick.

And no one would disagree with that. Not even me who is hating watching the boxes disappearing – he’ll be gone soon, days probably. I’ll be alone.

Praying to the ‘good in the situation’ which is God.

PANDEMONIUM!

2008-04-05T09:37:00.000-07:00

My skull is fragmenting like a hatching egg-shell -splitting, splintering, falling away from the sponge of my brain.

And I know Lucy’s is too. Poor, little, toy poodle, whose whole head fits smaller than a tennis-ball in the palm of my hand. How can she understand when she has no experience to relate it to? When all she knows is the discomfort – the audio pain – and that her human won’t stop it. There is no concept of ‘can’t’ in her canine mind.

Especially when her human – the one she’s with - is the one who’s brought her every pleasure and comfort before. And stopped everything that’s been wrong. Taken the pain away.

Wasted days with nothing but the trying to survive.

The human, spastic with disease. Just sitting.

The poodle (“Never call them ’dogs’, they don’t like it!”*) lying in her igloo bed, unsure, waiting. Hoping for some attention.

As the human hopes for love.

And all they have are the hammers and drills of upstairs neighbours wrecking lives for the sake of Mammon. No care. No consideration. For the short space of time left to the creatures below them.

Who only have each other for a minute.

I hold Lucy’s floppy ears tight to her face, so that, for a heartbeat, life feels good.

* I don’t know who coined this phrase about poodles but it’s so true: they really are like humans and far too dignified to be d-o-g-s!

Self-indulgence, self-pity or both?

2008-04-05T09:14:00.000-07:00

Before the “fun” piece I spoke of, dear reader, I ask you to humour me for the next two, short, posts [or ignore them – I wouldn’t blame you!]. The thing is, I got into looking at writing forums and emags. while the noise upstairs was going on and these are the result. Just some self-indulgent. self-pitying prose, slightly incongruous for this blog but, nevertheless, worth holding on to (to me!) for memory’s sake.

The mayhem eased on the 19th day. I won’t say ‘ceased’ for fear of tempting fate and, anyway, I doubt that it has.

And the reverberations (in my head, at least) continue, i.e. there must have been nerve damage and I feel weak, still a bit nervy and have been depressed.

But I promise I’ll move on soon.

Okay: ignore next two if you like...

Right, it's time to let rip...

2008-03-24T06:58:00.000-07:00

[When you read ’10 days’, make it ‘17’, and when you see ‘weekends’ add on ‘even Good Friday – sacrilege!’ Thank you. Due to Tom, Blogger and Easter blogging was delayed!]

Aaaaaaaaaaaaaach!

Was that loud enough? A piercing, desperate scream in the afternoon? No.

A bang of my own then on a hollow cupboard door? No.

A grenade through their window perhaps? Oh, now you’re talking. That might put a stop to it..

Ho ho, how we fantasise when the wrongs are being wrought on our beings. The fiction we conjure up in our impatience for Divine retribution, not often seen in this world. Reminding ourselves, just in time, two wrongs don’t make a right.

So that impotent we stay with un-spent anger turning to depression and forming sickness inside us. Depression. Dis-ease. The big D’s of an MSers life.

And which we try so hard to avoid.

You will see it as irony (it is ironic). After all my stresses and miseries over the new Social Landlord and the “improvements” to come, the neighbours upstairs – directly above me – have had builders in for the past 10 days. This is day number 10. Of sledge-hammers and drills just feet away from our heads. Mine and Lucy’s. Together, suffering and starting, as one, with the sudden loud noises. Nervy – worse even than an MSer on a bad day has a right to be – and reaching first for the ear-plugs (me – poor Lucy, I just hope her floppy ears help!) and now (again in my case), for the oxygen can and mask. I bought them after yet more nights of breathless “panic”. Oh dear. What’s happening? I am so upset.

But most of all (nearly!) for Lucy. She didn’t have to be here. And she keeps looking at me like a child who’s just realised her mum can’t put everythng right. And it’s as if she’s saying, “But mum, you don’t like noise, why don’t you stop it?” And I feel guilty and rotten and insignificant. And she keeps running off to hide in the other room.

At first, they [the neighbours] ignored Tom’s inquiries at the door (he goes more “nuts” than me when he’s here) but after a few days he bumped into a labourer in the midst of the rubble outside our window. And was told it was a private job, they were putting in a new bathroom (ah, but it’s sounded more than that now). So the plot thickened. Why not wait for the “Dusty Bird” (DB) [as I now call the Landlord – those involved will get it]?

And to cut it all short – I wish! - oh brilliant, this family has bought “upstairs” – leasehold - from said D.B. - profits, eventually, all round then! And, presumably, can and will do what they like, when they like and as much as they like, with not even a polite warning to us [I could have gone into Respite].

The Housing Officer, Anti-Social officer (goes on late into the evenings and at weekends) and the Leasehold department have all been notified and may or may not contact them. But really, I can see a few people are thinkng it’s me who shouldn’t be here – as if being this disabled I no longer belong with the general population (I won’t rant about euthanasia this time! But it’s wrong by the way.) The Social Worker keeps on bringing up options.

And the MS Nurse - who came again because she knew that at the last place the Medical Officer had advised I be moved before “regeneration” began - suddenly remembered a Care Home she thought might suit me. In a lovely part of Kent. Wait for it: where they accept small pets!

Well, I’ll be looking at the brochures they’re sending. And actually I checked everything - even read the local ‘paper - on Google one noisy night when Tom had gone out!

But... well, we’ll see.

So, I’m sorry Steve (The Power Guides and Lucy’s Comments), I’m not sure I can stay here after all. This is nasty. A whole new ball-game (as my American friends would say!) now.

P.S. Oh and, by the way (talking of American friends – all friends), if I’ve seemed irritable on anybody’s Forum/blog in the past couple of weeks then I apologise, I’m sorry. Hopefully, having read this, you’ll understand. [You know how it is: MS is bad enough.]

oooooooooooooo

And at this point I say “Basta cosi!” Enough things, in Italian. Because I’ve had enough of these tales of woe and want to get back to where I was. What I should be.

And I’ve got a more fun piece I’ve been working on...

Easter 08

2008-03-20T18:48:00.000-07:00

"... take up [your] cross daily and follow me." (Lk 9:23)

Thinking of you all at Easter.

Love, Virginia

Still a quandary...

2008-03-06T12:56:00.000-08:00

My allocated-at-the-moment social worker came to do a new asessment recently - and went away with completely the wrong end of the stick. She judged me, and the situation, on my “performance” that afternoon; that hour.

Ha ha! Derision and laughter from MSers everywhere. As if we don’t make an effort. Perk up with the unusual interest in our sorry state. Enjoy the attention. (Well, acually, of course, I don’t, I can’t bear people coming, it hurts and tires too much. Plus they nearly always have a “perfume” to make things harder. I’m just polite and that’s my downfall – it gives the impression I’m better than I am.)

Anyway so H. (that is her initial) decides I’m “managing” physically (not seeing the pain or understanding I’m pushing myself way past managing just because I prefer to be alone than with someone who: a) doesn’t care, and b) I’m allergic to). So that, we should forget about spasms and falls; sons leaving and builders arriving; spiders in the middle of the night. Forget about how much I don’t want to be separated from Lucy (surprised me to learn that one!) and put aside the idea of live-in care...

In favour of: "VERY SHELTERED HOUSING"!

Ah, the place toughie oldies live at. Independent living but with 24-hour care when needed. Available on the premises (usually a block of flats [in USA, apartment block]). You get a flat to yourself, surrounded by like-minded, like-aged others, plus nurses/assistants at the touch of a button. Meals are provided [in a communal dining-room] and washing done, but your flat is self-contained: you can keep yourself to yourself. In other words these facilities are for anti-social (maybe they smoke), unloved and unwanted people, who have learnt to appreciate their own company and are, possibly, a little cantankerous!

And I’m not being fair (that was just me I was describing!). Probably most of these folk are widows and widowers who do want their own space but need the occasional help. Good people - trying not to be a burden. And I guess I should be flattered that H. thinks it would suit me – no one else being a nuisance. But I’m not...

I’m not as “senior” as the criteria call for (only in degenerative physiology!) and require more practical help than the average resident. As much as we keep trying (MS Nurse, me, etc.) Social Services still do not comprehend primary progressive multiple sclerosis (PPMS). And – muttering something about possibly moving to a Care Home later (again with a move?!) - H. went away to see if I could live “Very Sheltered”, and take Lucy with me.

A week later she rang to say I couldn’t.

So: no builders and no spiders, that’s good; but, also, no Tom and no Lucy – bad!. “No. No. No!” to Sheltered Housing then.

And next thing from H.? She’s gone on a week’s leave!

Oh great. Tom has taken half his boxes now and assures me he will “vacate” on 1st April.

Ah! I was very tearful last week...

However, then along came a helpful Comment from Steve of The Power Guides (see Lucy’s post – he wrote it to her!), just as I was [almost] reaching the same conclusion: i.e. I’m stuck, may as well try to ride it out, keep writing and hope for better/miracles.

And I felt better. Thank you Steve, and all you blog friends. You are what will keep me going.

The man next door

2008-02-26T08:24:00.000-08:00

The man next door is elderly. Ha! What does that make me? Youthful? No, I’m middle-aged. Len – that’s what I’ll call him - is older.

His body’s more agile than mine. He uses a stick and has a power-chair but can still walk about pretty easily, at least short distances. And manages to live alone. Or, at least, used to. Because I, anyway, am not so sure he still can or should be allowed to.

A man after my own heart: wanting independence, as long as possible? Surely I, more than anyone, should understand.

Yes, and I do.

So, am I a hypocrite? Well, no. And one day, God help me, I may need Tom or someone to remember these words – they probably won’t be able to remind me [you’ll see why in a minute] - and put into practise what I preach. Because poor Len has dementia...

About a month ago we first knew it. Tom had been coming home, rounded the corner into our footpath and there was Len. Looking a bit pale in the shivery dusk light and bemused, according to Tom.

“Hello mate! You all right?”, asks my slightly concerned son whose mind really was on getting away for a pint as soon as possible. “You look cold.”

And Len shuffled up to him with half-recognition in his otherwise frightened eyes, mumbling to himself and stammering over his words to Tom: “D-did you see my wife down there?” He nodded in the direction of the side-road running like the cross of a letter ‘T’ across the top of our path.

Now this dear old man’s wife had passed away, oh many moons ago. In fact long before our arrival here. On the night we moved in he bemoaned to me, during our greeting on the doorstep, that his infirm wife had not been given a walk-in shower by the council (the noise of which, being installed, had bothered the neighbours it seems – even though we’d left a note of “apology” when we viewed). Calling on him one afternoon a couple of years ago, when I could still make it up and down the path alone, he showed me where she used to sit and a beautiful painting of the Madonna and Child she bought in Rome (they both belonged to our church, Len of course, still does). He obviously adored her.

And he’s a sweet man: he made sure I got home (i.e. back up the path with a successfully opened front door!) before bidding me farewell.

He was a widower who now in his regressing mind had conjured his wife back again into a temporary, wished-for reality. He believed she would be coming home from the shops (or somewhere) and he should look out for her. Perhaps felt she’d only been lost and could prevent it happening again by making sure she was found now. He was desperate. Pleading with Tom for acknowledgement and reassurance. Tom gave it somehow and then managed to get this echo of a man back into his hollow house, before coming to inform me. As I’ve said elsewhere, my strapping young man of a son may feign disdain for all, but truly his heart is good. And he cares. He wanted to make sure Len was safe.

And, possibly, also that I could engage with it, deal with it and take over so that at least he wouldn’t have to worry about me – at that moment – and he could get to his friends. I could still take charge of a situation. Fair enough!

I rang mutual church friends I hoped would have the adult son’s number. And later they rang me to let me know the son had gone to his dad. We all relaxed.

But nothing changed. Len stayed where he was in the same way – perhaps now with one carer - basically alone.

And, naturally, things worsened.

So that three weeks after that, at two in the morning, there was Len, locked out and knocking on our window.

Thank God, Tom was still living here. Except that he was asleep and had work the next day. If I’d been alone I could only have rung the police. My legs have had it by that hour and won’t move easily.

It was the first time I realised I couldn’t reach down to physically help someone. And it hurt. Prayer is the last offering.

Ah well...

It was me then that first heard the scuffles and whispers outside by the bins, as I was getting ready for bed. Not foxes this time, I decided. Not teenagers (this wasn’t the last place where we might have found needles on the stairs the next morning and where once youths, aggrieved by a neighbour’s screaming at them about “disturbance” on Halloween, as “payback” wheeled away her electric wheelchair, from right under her window). But something or someone strange to be rid of. Which meant - unfortunately and painfully – it was me who was (a bit like afore-mentioned neighbour!) shoo-ing at “them” and threatening to call the police through the entry-phone and finally the letter-box.

Lucy, who – what-do-ya-know – had chosen that night to sleep in her sitting-room igloo, became frantic. Was this a friend? Should she get excited? Or should she just keep barking because she didn’t know what it was and, anyway, it was wrong. Mummy should not be on her legs or talking to someone through the funny phone. She grew hysterical as Tom rose to investigate and was immediately, still noisily, dispatched.

But, oh boy, I joined her then in the hysteria zone (funny how you can be strong until someone you believe stronger comes along and then you crumple) – and it all got horrible.

Tom, of course, was more afraid than me (!) and used his tried-and-tested hollering-at-Mum strategy to scare off the possible intruders (he refused to just open the door [idiot place doesn’t have a peep-hole and it’s jet black outside] to threaten them with his size!). So I did the letter-box bit again before being forced to resign by spasticity back to my chair with my legs up. And that’s when, apparently, Tom pulled back the curtain, saw Len and decided to bring him in!

Oh, horror! It was too much. And I’m so sorry. But one multiply sclerotic person plus one senilely demented does not a happy scene make. Neither can really help the other. And if there’s a third person pretty much in denial as to the state of the first (yelling at me to calm down, make phone-calls – I’d already rung my panic-button (council) and was organising police/social workers), well, as they say, it ain’t happening, man!

Tom, at the same time, was trying gently (!), to get Len to remember his son’s number (no one had actually known it at church so we were none the wiser). But all our neighbour could do was babble, as he sipped on some water, that, “They” had stolen his key. Mugged him outside his door and taken it. “They” were stealing all the houses on our path. Soon, everyone’s house would be gone.

And that’s when I got it. Oh poor Len, he was in a panic and maybe losing his mind, all because of the new landlord (the Registered Social Landlord [RSL] – see last post) and the builders to come. Just like me, that was what was causing his upset.

Oh so cruel. I explained it to Tom.

And, eventually, Len produced from his pocket (I think after he heard me say “the police are coming”!) his son’s number on a little scrap of paper. It was our lifeline (Tom thought by this point he’d be staying the night!).

Anyway, John, the my-age son, came and I spoke to him and he was sympathetic about my situation and I told him about panic-buttons and took his number. And we all said “Goodnight” with assurances of getting Len help in the morning.

Which, by all accounts, is what happened. He saw the G.P.

But he’s still there, next door. Alone. And this is what worries me. Admittedly for my sake (I’m afraid something like that will happen again and Tom not be here) but, most of all, of course, for his sake. It’s scary that he could go – that anyone could go – completely bonkers with no one to guard them against danger/mishap/self-harm. I hate it.

And that’s why I have told Tom – and why I’m not a hypocrite – that should this happen to me (i.e. a stroke or cognitive dysfunction renders me non-compos mentis) and, above all, I can no longer write - in any way ( diggle-daggle ’s fine!) - then the time for Residential Care has arrived. As long as I don’t know about it, it will be all right.

But unless or until that occasion arises...

Ah, poor Len, sort-of half-way there, that’s nasty. He’s in my prayers.

Where’s Lucy?

A touch of anthropomorphism

2008-02-08T06:51:00.000-08:00

[Dictated by Lucy on Saturday, 26th January. Transcribed later!)

“Yap, yap!” (Jumping up, big smile on face, little tail wagging.)

“Hi friends. This is Lucy speaking and I’ve taken the reins here because, boy, do we need help (Mummy and me that is).

“You see, today is my birthday. I’m two years old today. And, apart from the first eight weeks of my life, I’ve spent all of that time here. And I’ve loved it. It’s been tough – there’s not much in the way of light and fresh air - but, most of all, it’s been happy. With happy, loving – at least with me! - people: Tom and Mummy. And, more importantly, plenty to eat. Most days are good.

“But today things are looking decidedly gloomy, so I’m turning to you guys to cheer Mummy and me up.

“As I say, today is my birthday and I think it would have been good (I over-heard whispers of presents and treats and a possible visit from Uncle Blob) but yesterday along came more bad news. Very bad news. The ‘Mum-can’t-cope’ sort of bad news. And the type that causes the stress for spasms. I’m worried.

“Builders are on their way!

“Now I know poor Mum had three years on a building-site [council “Regeneration” (see Comment Column and MS –My Scene)] at the last place, before I was born. And she was moved here (a bit late) to get away from all that, as well as to gain wheelchair access.

“The Occupational Therapist (O.T.) told her then – 2003 - that this place was not due to have any work done (it had obviously been double-glazed and decorated not long before and O.T. added a new bathroom with walk-in shower, and ramps. It didn’t seem likely.). So Mum relaxed (apart from the spiders but we’ll leave them for other posts – they don’t bother me too much!).

“Yet, during the last year the flat went from being council-owned to being owned and run by the “Community” (as a Registered Social Landlord – RSL). And it is planning ‘improvements’ to take place over the next five years.

“Ergo (I hear words like that round here and, being a poodle, learn them very quickly), Mummy is beside herself.

“With Tom on his way out – boxes everywhere, says (coldly) he’ll go next week – she is kind-of stuck.

“Should we still try for live-in care?

“Should Mum put in for another transfer? (I don’t think she’s strong enough to move again – not at all physically, and mentally she’s too exhausted to even think about it.)

“Or, should she go into a Care Home (as Tom seems to think best!)?

“Well, I’m looking at her now. She’s writing and I’m lying in my igloo-bed dictating this (!) but mostly waiting for my party to begin.

“And I can tell she’s cheerful enough, so maybe it’ll be all right. Maybe she’s right and the Lord will provide...

“And I just want to thank you guys for being there, for being friends and for listening – she’d be more lost without you.

“Hey, why don’t you come along to the party? Bow-wow! That’d be good.

“Love and licks,
PARASIENTA LUCIA (my Kennel Club name – well, I should seize the moment!) aka
LUCY x”

Is multiple sclerosis (MS) psychosomatic?

2008-01-21T07:44:00.000-08:00

On January 1st 1969 a 15-year-old girl walked into a house that wasn’t her home and was immediately swallowed up by the family who lived there. A middle-aged woman came to greet her from the kitchen, a young boy grinned and nodded before running up the stairs, and a man, obvious patriarch of the household, lay sprawled on a settee in the sitting-room. He motioned to the girl to sit down. But she was unsure: the television was on – during the day! – and he hadn’t stood up when she entered the room. She was not at ease.

The woman entered with a tray of drinks and biscuits and behind her followed another woman – more severe in appearance. Formal. She was the girl’s Social Worker and was the one who had arranged the girl’s stay here in this house and brought her here today. The girl was four months pregnant and banished from her own home – her own family – and banned from the “Unmarried Mothers' Home”, because it was too close to where her own father worked. “What if I see you in the street?” he had asked. “I would have to ignore you!” Oh, the shame.

The young girl, who sensed nobody loved her, was forced to stay with the “alien” family on the housing estate until her baby was about to be born. And in that time she learnt that these were the best people in the world (she shared a room with another teenage girl the couple fostered, and there was a disfigured baby they were hoping to adopt). This family, and their friends and neighbours, had hearts of gold. And by the time the girl had to leave she loved them very much.

Her son was born, by Caesarean section on Sunday, 27th April 1969. And for ten days she had him completely to herself – even taking him out of the cot in the ward to lie on her bosom in the middle of the night. She wasn’t allowed to breast-feed him because they had to be parted.

Her parents visited, the father of the child visited but none looked at the boy besides just one of her brothers and he loved his nephew.

But on the tenth day the Social worker returned. The girl’s hair fell over her eyes and caressed the bundle she held. She was crying but for a moment her son’s eyes opened and they gazed into each other’s hearts.

Before the older woman, hardened by years of experience, reached down to separate the two – mother and child – forever. In an instant gone, leaving the girl alone.

Alistair, as she named him on the birth certificate, was adopted six weks later.

And yes, that girl was me. and that baby was my first son. It took me two marriages (I wasn’t Catholic then, maybe if I had been...), too many relationships and 12 years after that to conceive Tom. And you can imagine how precious he’s been to me and always will be.

And, can you remember when Tom planned to leave? Yes, January. And when did I wake up with this latest spasm and find myself less able than ever to live my life alone? You’ve got it, the day I always remember that wonderful family who cared for me but could never love me (we only met once more after that and it was awkward) – New Year’s Day, 2008. 39 years later.

Coincidence? I don’t think so.

Of course there were bad events in my life before this and big traumas after (see MS – My Scene, ‘life-story list' ) – not least the windscreen accident two January’s later.

But I think in some buried, scared place, Tom’s imminent departure brought all that back to me. The pregnancy and the loss. I think MS may well be psychosomatic (and if you Google it, so do a lot of psychologists but I don’t want to get
“text-book” so I’ll leave that to them).

What do you think?

Live-in carers?

2008-01-21T07:29:00.000-08:00

Before I put the next piece in, I thought I should just let you know (as you’re bound to hear a lot about it in the coming months) that the MS Nurse, Social Worker and I are in the process of finding live-in carers (Personal Assistants) to move in here when Tom leaves.

It’s anathema to me but best of two evils I suppose (the second being a Nursing Home!).

Agh! How does this happen?

God help everyone.

Brevity, thy name is... my posts from now on

2008-01-15T06:50:00.000-08:00

Ha! That’s a rash statement. A promise I may not be able to keep – made only of intention and, absolutely, no guarantee.

But I’m going to try. In fact you will see from the couple of entries before the Christmas one, I have already made a conscious effort. The Christmas post sadly went on much too long as the worst pain of the spasm did and the use of sedative herbs to counter it. I certainly don’t expect you to wade through that one – it’s only there as a memory really for me later on. But the couple before, plus the picure of Lucy under the commode (‘Every picture tells...’). Oh, I’d like you to see those.

Anyway, that’s the briefness of this one done. I only wanted to apologise for taking too much of your time – if you tried to keep up – and give you an assurance of shorter, more immediate, updates from this point on.

I really appreciate each of you for being there (and will try harder to respond when you write to me).

Take care, everyone.

Love, V x

Christmas 07

2008-01-13T09:55:00.000-08:00

[The Christmas decorations come down today in the EWTN chapel. It is the celebration of the Baptism of the Lord and I believe the official, Roman Catholic, close to the Christmas season. Therefore, although this post has been horribly delayed (i.e.by spasm) I hope you’ll forgive me. It is relevant to all that’s been going on and is going on now. As is Christmas of course!]

I don’t write much about symptoms - not here or on Forums. In the same way I don’t talk about symptoms. Not in detail.

Because I ignore symptoms. I don’t deny them, which would be impossible anyway, given that they’re with me, are me and all that make up me, 24/7. But I don’t give them precedence. They bore me.

As they would bore anybody who had to witness constant, continual, moaning and griping about every little twinge, ache, agonising nerve-pain and fatigue-ridden gesture.

Apropos (another one of my famous, non-emotive lists – see ‘my life in a list’ here): spasticity of legs; bladder and bowel incontinence (or opposite); blurred vision; optical neuritis; neuropathic head pain; emotional lability (bad tempers, mood-swings, etc.); chronic fatigue, and cognitive dysfunction (poor memory, concentration, etc.). You see what I mean? Boring and never-ending. Pointless.

And bad enough on a normal day. Hard enough – for everybody involved.

But when it comes to Christmas?...

Oh, now I’m going to complain. Now I’m going to be angry. BECAUSE MS CAN AND DOES RUIN CHRISTMAS. Every beep beep] little symptom! Conspiring and consolidating, en masse, against you.

And where normally you can drag them around – a dead, painful weight – offering them up to the Lord (as a Catholic) on the cross at Calvary, in prayer. Suddenly, there’s that too – as even the Priest will remind you! – this isn’t the time of the Passion (Easter, of course) but of the Nativity: birth, celebration and glad tidings all round.

You’re incongruous. You don’t fit in. And with all the wretched “progressing” symptoms, you’re unable to do anything physical for anybody. So that, perhaps for the only time in a year, you feel you are a drag. And a weight for somebody else to carry.

That makes me angry. When, in this case Tom, can’t ignore them because they are in reality, un-ignorable and there. Ever-present. When poor Tom has to be my Simon of Cyrene (Mat 27:32, Lk 23:26) and take up the cross of MS.

But, oh boy, can he do it in style!

I have mentioned before what a great cook my son is. [His grandfather was apparently an Italian chef (we don’t know very much because my half-Italian mother was adopted by English parents and, as far as I know, never found out more)]. And he is.

Tom has always had a flair for cooking – and, likewise, entertaining: his friends love it when he has a “do” of any kind! Therefore at Christmas, bless him, he is in his element. “Tommaso” is the Don of Christmas (I hope that’s not blasphemous in any way. I mean of course, primarily, in the home.)!

And he enjoys it, which is the great part. And looks forward to it – he’ll even be singing carols in June!

So it all starts about a month before the big day: the excitement kicks in and for the last two years, even Lucy – for whom of course, we buy loads of presents – senses something is going on. Something good, because Tom is happy. And she is happy and, unfortunately, excited too!

And that’s when this year, I began to wonder if I should do this to poor Tom again. Bearing-in-mind that he’s done them – beautiful Christmases for our little family – for many years now. Every part. This year I wasn’t even sure I could enjoy what he did.

I think I’m just too worn out. Which is sad. And that’s it, I was sad and just didn’t have the energy to rise out of it. Did I belong here? For a moment I even suspected I might prefer just to sit or lie in a Home and be waited on, like a child. Ah! Perish that thought! But it does niggle sometimes. And poor Tom (how many more times am I going to say those words?)...

Oh, but he just got on with it. With Lucy. And pretty much ignored me, much of the time. He was enjoying himself anyway!

After – as you know! – buying the cards in the Church shop, this year he signed (for both of us) and addressed them by himself too. Then he posted them and even remembered the neighbours “by hand”. Ha, he’s a good lad at heart!

A lad who goes mad with decorations – a couple of years ago buying (with his own money) a multitude of differing colours and designs, as well as our first Nativity Scene and – to counter it, I suppose - a singing Santa (oh, I hate those things!).

There are weeks of socialising to get through (yep, the hard part for me, home alone), and then on Christmas Eve, at last it’s family time. The Holy Family in Heaven first and foremost, and our own, dysfunctional duo with a dog (now who’s countering?!)!

And Tom’s favourite bit begins: out come the food and the wine – and, often, the beer and the champagne too! – and he’s off...

And it really is wonderous to behold.

[But hard for Lucy now because she always gets shut in her Pen when Tom and food get together – otherwise he’d never be able to move in the kitchen!]

To a soundtrack of Christmas music (at this point we’ve agreed to ban ‘phones, computers, and non-mutual things on TV) – could be carols, Gregorian chants, Tom’s own compilation, the Rat Pack or Phil Specter’s classics - the fridge doors open (two!) and the chopping – and the munching and slurping! – take over the meaning of the night. It’s Christmas and Tom is preparing his biggest, fanciest, most Mediterranean salad of the year.

In the sitting-room, where Lucy and I sit opposite each other, the anticipation mounts as the aromas build up all around us. Candles flicker, tree (artificial but lovely) lights sparkle like scattered diamonds and Jesus’s manger in the stable is ablaze with a thousand golden halo’s and the beam of the guiding star. It is brilliant and very beautiful.

Tra-la-la-la! And when the meal arrives - to a fanfare of trumpets (poetic licence here folks!) – it is a work of art. A perfect creation. And a celebration of everything we believe. – as well as extremely delicious!

Ingredients include: salami and Parma ham; meats I don’t know the name of; varied lettuces; olives; (he has cucumber/tomatoes/onions – I can’t!); chillies, garlic; Feta cheese, buffalo mozzerella cheese, oh, etc. etc.! Tom has surpassed himelf – again! It is fabulous and even I have a drop of white wine (you can imagine his intake!).

Those of you who know me well enough, or have seen the Anti-Candida diet I’m on in
MS – My Scene, will be wondering if I stick to it. Well, yes. Sort of. I do break the rules a bit at Christmas or when I used to go on holiday (in Italy how could you not?!), but then for ages afterwards I do what I can to undo the damage and hope it’s enough! But, heck you can’t spoil it for everyone else.

My favourite Christmas dessert (normally, of course, there isn’t one), has become pears (for me half a pear!) smothered in Mascarpone cheese and topped by pine-nuts. Yum! Italian recipe. It is the cheese that gets me really! Every time. Ho humm!

Sometimes it’ll be just a square of Carob chocolate, or my usual nettle (and other herbs) - “Mum’s Tea” and a Hob Nob!

It’s the next day, glorious Christmas Day, when we try (!) to relax (as most people I suppose).

But first on Christmas Eve there is: more attention for Lucy; Midnight Mass from Rome with dear Pope Benedict XVl, and the game!

Having decided poker was not quite de rigeur at this holy time, Tom spread out the Scrabble board. Lucy went to bed in the other room and the competition (it always is!) started.

And that’s when the – out of synch. - trouble appeared. In the form of cognitive dysfunction. I had it and showed it and, with bad letters, began to be upset. I should be given a handicap as in golf. I do have a handicap, as in MS. This isn’t funny and is fast developing into humiliation. I feel a fool. This graduate (2:1) of English suddenly couldn’t make a word. Or spell. It was horrible, and, as Tom waited – and studied the liturgy of the Mass – a panic attack ensued.

I could feel his impatience. He wanted to get to bed. He was only trying because it was Christmas. He did all the work.

It starts in the tummy, I think, and then you start sweating, you can’t really think at all and you feel as though your skull were contracting around any remaining brain-cells – squeezing the last drop of fluid out. By now you are feverish and with rivulets of moisture running out of every pore, you start screaming for fans to be put on and all heating dismantled. It’s over. No good. You’re soaking wet, your head pounds from fixating on the same illiterate vowels and consonants and your bladder and bowels are feeling very uneasy. You can’t jump up but you want space. You throw your tile rack at your opponent and tell him to try. You’ve got MS and this isn’t fair!

It’s pathetic. And this time I saw it and laughed: a neurologist would have a ball!

Then, relief – Tom couldn’t find a word from that lot either. I was exonerated. Vindicated. And felt better. We parted for the early morning hours with the day upon us and all was – comparatively - well...

It’s nearly the end of Christmas as I write now – January 5, 12th day tomorrow when the Magi (three Kings) arrive at the stable. We should place them in the Nativity Scene then but, perhaps like most people, they were put there at the beginning (dear Tom is not so pedantic as I can be – thank goodness!).

But why is this taking me so long to get to you? Oh, because of symptoms. and a couple of bad (with and since “the cough”) turns, that’s why. (I’m sitting here now in the worst – with MS – pain I’ve ever had but hoping for the scullcap herb I had a while ago to ease all the nerve things (if not me into a deep, afternoon sleep!). I can’t really walk (without agony and collapsing legs [but the wheelchair would be too impractical] and I’ve had to have an emergency carer who, we both agreed, after two mornings, shouldn’t come back again (she didn’t like my cigarettes, I couldn’t cope with her Aerial washing-powder [I know it seems hypocritical that I smoke - and I’m paying for it [but I’m also allergic to nicotine patches and besides, don’t want to give up]. Her own agency said she was wrong to say what she said – after all I might be in care if I didn’t smoke – it was her job to come here. Ah, well. Catch 22, crippled irony, disabled dilemma - I don’t know what to call it but it stinks: I need help but can’t have/don’t want it. BAD situation.

And because I DO want to finish this by tomorrow: SPEED! (No, not an amphetamine – maybe caffeine: kola nut and coffee.)

Christmas Eve night for me ended with a Sisters’ (Poor Clare nuns of Our Lady of Angels Monastery, Alabama, USA) concert on EWTN. Very beautiful, soothing and relaxing.

So that in the morning, with Tom and Lucy rushing around bringing coffee and good cheer, I was able to match their mood. We opened the presents pretty much straight away (Tom wanted to get on to food!) and it was a delight. Lucy especially was very grateful and enthralled with her gifts (but the cuddly tiger, sadly was soon removed and binned when we saw that every whisker, as well as bit of fluff, was easily removed by L’s teeth!). She loved the very safe (and expensive) Oscar the Octopus, Happy Spider (with 6 legs!) rope toy and later hoola hoop and Kong!. Tom, I’m afraid, only got driving-lessons and a couple of books from me, after I realised I couldn’t quite stretch to the £500 signet ring I had wanted to buy him! And he bought me the Olympus digital camera I had chosen with which to enhance my blogs!

The Christmas music was playing again.The neighbours here (unlike our last place) remained invisible and inaudible. And it grew into one of the best and forever-favourite Christmas Days we’ll ever have together. We’d be fools to imagine it might not be the last.

When Tom cooks a Christmas dinner (actually, late aftenoon), I just know I’m one of the most blessed people in the world. Thanks be to God!

And trying not to be an MS drag in any way (at least for the whole of this day) - just as he was trying not to be a defeated, disheartened on-his-way-out-the-door son - we both sat down (Lucy in her pen watching us) to a wonderful feast of : leg of lamb; Jamie Oliver style roast potatoes, parsnips and carrots; Brussels sprouts; broad-beans; peas, and the most delicious herb and garlic “gravy” you can imagine. It was a masterpiece and Tom must always remember how he made his mum (constantly) so proud and happy. Whatever happens, he must always know that.

There was another great salad later and a game of Lexicon, a present from (brother) Blob to me. We did watch some TV- at some point Dickens – but mostly I remember that we had fun. Even though my tummy (bowels) wouldn’t keep still the whole time and I couldn’t help the fatigue and the head pain and the-not-being-able-to-help, Tom stayed very tolerant and we perservered (a popular word round here!).

Bless him, we had a much more laid-back Boxing Day (easier for no pressure - Tom loves BD) and we enjoyed a free-range chicken with all the trimmings.

Computers were still banished, as was any talk of the coming year But, certainly by the Thursday, poor Tom (again!) started to burst at the emotional seams. It had obviously been stressful for him and along came the gratuitous comments, which, I admit, can truly hurt. Things like: “Well I can’t keep pretending forever!” and “When I’m not trapped here anymore, I’ll...” And so on.

And by Friday he was going out and I began to feel a bit panicky. Even tearful. Because there was definitely some extra pain and the symptoms had undeniably got worse. The cough - which by now I put down to COPD (Chronic Obstructive Pulmonary Disease) and was treating herbally, had left it’s mark, its after-effects. Also, there were allergies to food (DRAG. DRAG. DRAG!!!). I did not feel confident. And on we had to go...

To sum up, it has been a beautiful Christmas in celebration of the birth of our beautiful Lord and Saviour, Jesus Christ.

But it has also been cruel for both Tom and me (and I pray for anyone else who knew suffering). And ‘Christmas’ and ‘cruel’ is an oxymoron. A line which kept running through my head.

Coughing

2008-01-12T17:06:00.000-08:00

[Another piece to go with the above pic. of Lucy. The one I was writing pre-Christmas with the pre- spasm “cough”. You will see why I wanted to wait to publish this one.]

I sat here in this same chair at 7am this morning – an hour later than the previous days but still in the midde of my night – coughing and sweating and coughing some more. (But please don’t tell anyone, especially MS nurses, doctors, etc. I’ve got rid of these things before I’ll do it again – or not, and die in my bed, that’s fine.)

Feeling very alone, but for Lucy.

Tom, who is usually at work on Saturday, around in the evening, out Sat. night and back Sunday dawn, has gone away till tomorrow (Sunday) evening. And I’m not sure I’ll make it till then - either on my legs or without kicking-the-proverbial due to whatever this wretched cough is

So, I thought I’d write it down as I go. Possibly stream of consciousness, or something like it (I need punctution though, get lost without rules. Imagine the state of your mind – well mine anyway – without boundaries). And maybe it’ll keep me going. For Lucy, the only one who cares right now, whether I do or not.

And it was that realisation - not for the first time as you know but this time in an even worse state – that, in the early hours of this morning really moved me. Nearly made me cry (in the middle of the moans and groans of an already very fluid illness!). I suddnly knew why so many of the homeless have dogs with them. Scraggy, shaggy creatures sometimes (yes, yes, I’m describing the canines), but, oh you can bet, fed before the owner, and quite right too.

I didn’t used to understand (in my days of not liking dogs (see earlier post here) but, oh boy, can I empathise now.

When there are no people to love you a dog will always be there. You are lovable to at least one living being (even if you feel you disgust the humans – ha, who’s disgusting making you feel like that?) and so, there’s no question as to who should eat first: the loyal, devoted, totally unselfish one – the dog.

I went back to bed after the big “attack” and had an hour’s dozing before Tom burst into the room, threw a cup of coffee on my tissue-striven table, filled aroma-streams with tea tree oil and crashed out again, wishing me “Good luck.” And, “God bless.” (I’d left him a similar note.) He’d fed poor Lucy at that early hour and put her back in her crate-bed in the other room. She (as she does usually in the igloo-bed in this room) went straight back to sleep until I got up.

At 11.45 am!

And there this piece ended because the pain and the exhaustion of that day wiped me out. And because that illness did get really scary. Not just the cough but the not-being-able-to-get-enough-air-into-my-lungs, which forced the cough to try to clear them. That was the – commit your spirit to God – hard part. The most distressing.

I didn’t want any pro’s to know about it – and want to cart me off for tests, anti-biotics etc..

So I perservered but in Blogger silence. On the herbal routine I used back in 1994 for TB (Guy’s Hospital, London, will verify) and which I will spell out soon in MS – My Scene. It is more-or-less, the same as I use normally (see here) but with: golden seal, internally, as an anti-biotic; extra echinacea; cough remedies like coltsfoot, elecampagne and mullein, and euchalyptus (mixed with olive oil) as an expectorant chest-rub

I put the whole thing – with help from Google - down to COPD (Chronic Obstructive Pulmonary Disease), a combination of bronchitis and emphysema caused by smoking. And for a week pretty much gave it up...

A month later and here we are, back to normal (please don’t ask about the fags!). The MS Nurse has been but only about the spasm (see above) which followed – and, of course, could have been caused by a) the germs or b) the physical strain of the cough itself. I told her about it but otherwise she never would have known!

And the reason for this post was only to show how important Lucy has been. I mean Tom has been great, when he’s been here, and really helpful. I don’t know how I’m going to manage without him. And that’s something I mean to write about, very soon, in this blog (how much of this whole MS thing is psychosomatic?) – lots to get on with.

But for now, praise God, we’ll put this behind us. And, as long as we can – Lucy and me! – move on...

NB Don’t “Crufts” give an award for ‘Companion Dogs’? Well, here’s a winner and a half. And all those homeless dogs. Let’s hear a big cheer for them.

Every picture tells a story!

2008-01-12T16:12:00.000-08:00

I thought you might like to see this picture.

There I was on Thursday night, alone with Lucy, wondering if I’d make it through the hours till Tom returned (around midnight) when I realised the cute scene below me (cute but poignant I suppose).

I was in my armchair - wriggling about on a pressure-relieving cushion, stretching restless legs (a nightmare since “the spasm”) as best I could - and there was Lucy looking up from under the commode in front of me.

Oh, that look melted my heart. And made me laugh.

So I reached for my new (not-used-to-it-yet) digital camera. And here it is, for all eternity: two captives of MS, isolated from their species but there for each other.

In fact, just to show how important Lucy has been to me through all this, I will now publish the post I was drafting before the spasm. With the cough, which may or may not have precipitated the muscles to contract.

Gosh, 2008 has been fun so far! I hope it’s truly going well for you.

Spasm - a rude interruption

2008-01-09T09:22:00.000-08:00

SPASM!

Aaaaaaagh! B------s! F--k, f--k. f--k! M---er f---er!

PAIIIIIIIIIIIIIIIIIIIIIIIIN!

Oh, this is too much. Sympathy for everyone so inflicted. Cursed. This is excruciating!

This is ridiculous. Everything stop for PAIN. SPASM. Your body contorted by a - I’d say crippling but I was already that – crease-you-up, permanent cramp. That’s the nearest thing to a description I can make. And I guess that’s what it is. But, most cramps – the ones I’ve known before (i.e. toe and calf) – can be massaged/stretched back into a “bruised” normality. This... this one that I woke up with on New Year’s Day, seemed to begin in the head, travel down through the neck (couldn’t bend it) and finish at the toes. With the spine and the left leg being, by far, the worst and, I am learning, longest-lasting (typical primary progressive multiple sclerosis (PPMS) I believe).

It’s insane.

It’s where I’ve been – having to deal with it, and – ah! – having to involve other people. And, worse, it’s where my writing’s gone.

So, here it is. My rebellion. And, yet again, b----y-minded determination. I WILL NOT BE BEATEN (that is, until the Good Lord calls me and that’s not ‘beaten’ that’s winning) while I’m putting up with this sh—and so is everyone (Tom, Lucy) around me, I will WRITE! Anything.

And ask you, dear reader, to forgive sloppiness and, probable, incosistency. It makes me cry. I was working on a couple of pieces - which I think I will plonk in, if only for memory’s sake but which I don’t expect you to plough through - for example, the one on our Christmas which, though pertinent to this, will appear anachronistic. And hope that in the end it works. ‘Anything’ being – at least for me, so I feel alive - better than nothing.

Then, after that, I guess, I’ll be much more immediate. And brief no doubt, which should please you.

I know a lot of my MSer friends suffer from these spasms. And poor Herrad, if you’re seeing this, I’m sure yours which send you flying over wheelchairs, etc. (a different type apparently) are much worse. Therefore, please take this as my empathy piece and know I am feeling with you (not just ‘for you’ now!).

Most of us have spasticated legs of course, which is why the usual, constant pain. But this.... Well, I’ve got to move again in a minute. The walking-stick is ready. There are things to lean on all the way to the kitchen, but I’m scared. I suppose of falling, as both legs can buckle and concertina down. I’ve already had to pick up Lucy’s poos (the bits that weren’t in the tray) from the floor, which I did with great difficulty and back pain from the wheelchair. And “Little One” will trundle after me licking my legs cool , intermittently, and keeping her place here even though I know she can make it almost impossible.

She’s the only one, physically present, caring right now.

And there I think I’ll leave it. But I will put in those posts I was talking about and ask you to, again, please bear with me.

God willing, I’ll catch up!

P.S.
People involved: Social Services; carer (come and gone – see ‘Christmas 07’ coming up); MS Nurse.

Visitors: MS Nurse – is asking GP to prescribe Sativex (cannabis spray) and discussed care options (i.e. live-in care which is – amazingly - available after all but which, with others is “on hold” right now (poor Tom!); Blob and his girl-friend, Kaye, and Father T. with Communion (oh, so welcome).

P.P.S.
Herbs of choice: Passion flower (Passiflora); skullcap; arnica cream. More on those later in MS – My Scene.

Bye for now.

1

Happy Christmas!

2007-12-24T07:27:00.000-08:00

Hoping this message finds you well.

I hadn’t had a cough since 1994 (and we MSers know how important it is to avoid them) but the last few weeks – ah! More on that later.

And, sadly, I’m still not photogenic, nor anything like it (I leave the self-portraits to those like Herrad and Merelyme who look so good – thanks for the blogs guys).

Plus, my new digi. camera is wrapped up for Christmas (“Love, Tom”!) so I can’t even pretend I’m still covering big stories for the ‘paper (Tom took this pic. but I’m always in the background “urging” on!).

In other words, a shambles.

But the love is there. And without further ado, Tom, Lucy and I would like to wish all Travels readers a very happy Christmas (those that celebrate) and a peaceful New Year.

It rhymes, so 2008 is bound to be GREAT! Optimism abounds.

God bless you.

Love, Virginia x

A post about a poster

2007-12-18T15:03:00.000-08:00

You know what, I’ve had enough of moaning about Tom. And I bet you’ve had enough of hearing it. He goes. He doesn’t go. He never goes when I tell him to. He’s halfway out the door when I beg him to stay. I’ve had it. Let him go or not. I don’t care any more (like he keeps saying he doesn’t). After this last (I’ll try!) piece about him, how’s about you and me, we just let him fade away. Disappear into the proverbial sunset. We’ll wish him well. From time to time we may hear from him But...

I decided that, rather than recount for you some of the finer points of our verbal sparrings, I would illustrate just one of the more, I say ‘duplicitous’/’cruel’, he would say ‘clever’/’amusing’, wranglings of recent weeks.

The one that, very sadly, involves a holy (T. bought it in a Church shop!) poster of the Blessèd Virgin Mary.

It goes like this: sometimes – if I’ve got any energy (and as I said above, if I have, it’s usually the result of anger) - I’ll try and give as good as I get. But it’s exhausting (maybe he remembers a time I almost invited a good debate but now it’s just resentment/belligerence on his part and hardly ever “interesting”) and often I feel ill –giddy – as a consquence. And my brain stops working. So, I’ll put on a so-what air and pretend I’ve got plans anyway – it’ll be better without him.

And a couple of times I actually did make plans as to how I would utilize the “spare” (once he’s gone) bedroom. And the other week I told him.

The first, if I was well enough I’d still like (but only in theory!): I’d open a women’s only poker den. And the first person I’d invite to join would be a best friend of his who I’ve got on with when we’ve met and lives nearby! Hah! He wasn’t amused by that one. Think he took it seriously!

I love poker and at one time planned to call this blog “Poodles, Poker and Penance”, because I meant to play so much more than I do. I think it’s the perfect remedy for cognitive dysfunction, it so livens the brain. And it’s social. Not a word to say against it (never bet money at home nor on the “Tables” but, in moderation and with a healthy bank roll [i.e. no one will suffer too much if you lose] the Catholic Church sees nothing wrong with gambling* and so, of course, neither do I).

The trouble for me now is that I’ve lost my main “Heads-up” opponent: Tom. He just won’t stay up to play any more (or he’s out). I have to rely on brother Blob coming to dinner (T. cooking) and that’s not often. But it’s fun when he does and we usually play a good “mean” game (I taught Blob!) with as much bluffing as we can possibly get away with (“tight agressive” they call Tom and me!). And we all agree that whatever is said at the table (ours) stays at the table. No hard feelings! See, good sportsmanship! Great game. I love poker. More later!

So Tom took that plan seriously.

But not half as seriously as he took the second plan. Because for that one I have to be alone – and that’s what he’s planning or at least anticipating. And that hurts because I know he’s probably right. But it seems pathetic which means he thinks I’m pathetic, so I’m sort-of embarrassed, which I shouldn’t be since it’s a beautiful plan. Then I have to remind him again: there’s a difference between humility and humiliated.

And there certainly is. And I thank God (which is being humble) for my knowing that.

My second plan was to turn the room into a Marian shrine. Dedicated to our perfect Mother in Heaven, Mary. You know the kind of thing: Renaissance paintings covering the walls; statues; candles; incense, and lots of flowers. A kind-of grotto filled with light and peace and a sacred aroma.

I love that idea. Tom said he liked it too. He would “enjoy being in it” when he came to stay, which would be “often”!

Yes, well, I didn’t mention it more than a couple of times. I thought it was forgotten (I wasn’t going to invite mockery, or “convince” him I was fine about his leaving). And a few weeks went by. We were heading for Christmas. Then: “Oh,” Tom blurts out one day, “I’d better get down to the Church bookshop and get cards, an Advent Calendar...” (and then, cruel blow) “... and I thought I’d get a big poster of the Virgin Mary, you know to put on the wall there”, he waved his arm into his room.

And that was it. More pain. I was horribly confused and torn. At first I actually believed it was for him, just for half a second. And I think I started to smile. But almost at the same time, I remembered and knew what he was thinking, and was struck through the heart: he wanted to start preparing the shrine, in readiness for his departure. His absence. My physical (but for dear Lucy) aloneness. I shrieked.

And he laughed.

And I said, “No, no, no!” I said “No” to Mother Mary and what I knew was truly good and beautiful. He just thought I was gullible and kept laughing.

And went to “the shop”, even visited the Chapel with one of the sisters, and came back with a pile of treasures and wanted me to be grateful and pleased.

But, hidden at first, he showed me later, was a fabulous poster...

I leave the rest to you, friends!

* Catechism of the Catholic Church (CCC) # 2413

P.S. I really would welcome your comments. But before you all rush to defend Tom and push him out the door, let me just say: I’m not a bad person, or selfish or spoiled and objectively, I see what you see – looking in. He should go, and with love, I know it.

It’s just that being taken over by progressive MS means, by definition, beng subjective: needy; demanding; scared; moody; angry, and sometimes, irrational. It’s hard to think clearly when all you can feel is fatigue and pain.

The best thing would be to find a live-in companion-carer. They could have the room. But that would have been easier at the old place – more central and close to one of the University of London’s colleges (my Alma Mater!). Here is not much good for anyone (including poor Tom) and, besides, I’m on benefits and Social Services don’t provide them.

Are you thinking Care Homes/Nursing Homes?

Please don't!

Oh, all right I’ll get an air-purifier (perfume allergy) and a load of carers. Thank you. I got there!

It won't get better than this!

2007-12-03T08:19:00.000-08:00

Ah, but these are the best days of my life! Yes they are – praise God. They’re not going to get any better than they are at the moment or have been for the past few, family years. Tom, Lucy and me (“Mummy” again - to Lucy!).

But most of all, Tom, who’s been with me (bar six months, five years ago, when he shared a flat with a colleague), 27 years. Even with progressive MS (and things getting harder physically), taken one day at a time – as MSers must – every day is a day to be celebrated.

Take this moment: I am sitting in the sitting-room, post-herbs, third coffee and Hob Nobs, and Lucy is opposite me asleep in her “Igloo Bed”. All is beautifully quiet (daily Mass on EWTN ended, the TV off again); the girls upstairs not back from school at least another hour (and even they seem to have SAD, they’re so “still” at this time of year!); Tom is at work in the Herbalists and will be home this evening for our usual “banter”, dinner (always cooked by him – he’s a great cook, one day I’ll write more about that) and TV viewing – or game. And, mercifully – after the last council flat on a building-site in the middle of four main roads (with a siren-junction!) – now in this, ‘wheelchair-accessible’, council flat, off a footpath and well away from traffic. Spiders allowing (every c. flat seems to have at least one infestation: in the last it was pharaoh ants and a wasps’ nest, here it is myriad arachnids (but there’s an encouraging new spray on the market we’ve been trying...)) - horrors allowing, it is perfect for writing. So, as you see, that’s what I’m doing.

And that to me constitutes a very good day. Free to write, as much as I like, when I like and, really, for how long I like.

And, perhaps more importantly, after being on the newspaper and also realising how carefully we must guard against losing it: free to write what I like. FREEDOM OF SPEECH. The life-blood of democratic society, keeping it alive and vital.

We must maintain it.

The horrible thing (some might say) is, in order to gain this time and this “ability” to write, I had to become disabled – give up the ability to take part.

Ah, but that is why I know the MS is a gift. A grace. And I thank God.

I look up to Jesus on the Crucifix above me and see that through uniting my suffering with His I can come closer to Him. And way before I got this computer, and for years before Lucy’s arrival, I was grateful for that blessing. Through prayer and constant communion comes joy and peace.

I am thankful for this time, these “best” days of the rest of my life. Even though, of course, they are coming to an end.

Tom says he’s leaving in January! Well there’s a good Christmas present! What a jolly festivity that will be, looking forward, eagerly, to the pleasures the New Year will bring! Oh great! Can’t wait! Is this a panic? Oh yes, undoubtedly. And probably a permanent state of affairs – at least until the “affairs” are dealt with (will they ever be in this world?) – and everyone knows what they’re doing.

It’s okay: the Lord will provide. It’ll be all right. It’ll be God’s will – whatever.

But really, how miserable. the wretched boxes he’s had packed for at least a year. the reminding me constantly that I will be alone (well, humanly maybe!). I swear he just likes seeing me squirm (just because I changed his nappies? Get over it!). Anyway, I am. And that makes me angry (as do pain and emotional lability, both par for the course with MS). ‘Anger is an energy’ (Sex Pistols). Ergo, that’s how I keep going much of the time. And I hate it.

It used to be so good when we could get out together. Even in the later stages when he was pushing the wheelchair and having to load it in and out of taxis. We used to get on so well.

Whether it was dinner and trying to talk Italian (we did a couple of years’ evening classes), in Rome; steamed fish at our favourite fish & chip restaurant, or fry-up (Tom) at the local caf., we used to laugh. A lot. Even at home, at the old place where it was noisier, louder and madder. We always found the “funny” in everything.

But now it has grown so bitter. As Tom sees it, nothing but gradual decline, degenerating, not only of my physical state, but also his own. His social life (he goes out, he’s going away at the weekend!) – worse, his mental health (he says – and I can’t prove otherwise or make him change his attitude (he’s “lapsed”. I pray!)). The MS is never stable but at the best he calls it “stagnation”. He’s had enough. It wears you out. There’s no reward as in most illnesses of getting better. As I’ve mentioned before, there’s no quick end as in fatal accidents or terminal disease. No, this one just goes on and on, dragging everyone close to it (if they let it) down with it.

It’s like when I was in hospital from the windscreen accident (c. 1971) and felt for my siblings coming to visit me and having to look at my face (“bride of Frankenstein’s monster”!). Now I feel for Tom and I know he has to leave. But I wish he wouldn’t.

I can’t have carers, I’m allergic to their perfumes (MCS – Multi-Chemical Sensitivity [see ‘Environmental Illness’ in Comment Column]). Not unless I try an expensive air purifier (but I don’t like the intrusion either!). I can’t cook, clean, shower myself or Lucy. I won’t be able to look after Lucy...

One day at a time. You see, there’s no other way.

This is a good day. I haven’t tried to walk for at least two hours, I might not be able to. Lucy needs some attention and another love (don’t we all). And the girls upstairs seem to have bought a light-box (did I mention that mine has been on?!) and got lively. So it’s time to move.

And count my blessings. It won’t get better than this!

The obligatory SAD piece

2007-11-24T09:07:00.000-08:00

Well, there has to be one. Every year, in any journal-type writing I’m doing. Somewhere, there will be a paean to SAD (Seasonal Affective Disorder).

A ‘paean’! What am I saying? A paean is, of course, a song of praise in tribute to something. And this black cloud (literally and figuratively) is in no way deserving of that.

But it sort-of gets one.

Almost annually.

And why?

Because, for some reason, depression – and let’s face it, that’s what it is – hydrates the creative juices, feeds that voracious, masochstic animal they call ‘art’.

And drives, if you allow it and don’t give up first, the motor of mental mobility.

Whatever metaphor you give it, SAD will be with you (if you’re a sufferer) right through from September to March, and, at some point – for me usually November (the name makes me shudder and I used to ban it!) – more painfully and, consequently productively, than the rest..

Therefore the ‘paean’. The enemy at least shall be recognised. And, who knows, perhaps with respect, even befriended.

Ah, the writer in me! So far, so good. Trying to make good out of bad. A blessing out of a curse (and, oh boy, does the Devil seem behind this!).

But I’m older now, and wiser than I was when I used to let it beat me (I couldn’t help it – see MS – My Scene (October)), and even than I was when I began hoping it would inspire important prose.

And I’m a cripple now. Sufferer of primary progressive multiple sclerosis (PPMS). Because physically, without a doubt – having failed to finish me mentally/spiritually – SAD has wiped me out. Knocked all the stuffing out of me. Pulled the rug out from under my feet. Etc. Etc. All the analogies that go with not being able-bodied any more – if ever: there was always wanting to hide/hibernate during the winter, even as a child. Physically I’ve had it.

So why bother at all, you ask. I’ll tell you.

It’s so that others may learn from it and take preventative measures. Or at least know best how to deal with it. And I’ve come some way with that:

- faith;
- lavender oil;
- give up dairy products;
- probiotics;
- lots of garlic/cayenne;
- extra-virgin olive oil;
- oily fish;
- sunshine – or, failing that, a light-box,
- de-humidifier.

But I’ve said all that before, in more detail (as link above ), and I want to move on.

We all know that one of the strong contenders for “cause” of MS is lack of sunshine. I would add to that damp (due to lack of sunshine), and, of course – also acknowledged - stress. The culminative affect of all these being Candida Albicans (as above).

It goes therefore as read, that right now a lot of MSers are feeling at their worst. And others, I pray for them, are developing it as we speak.

So what we don’t need is more to depress us. And that, I suppose, is the reason for this post now and in Travels rather than MS - MS. I’m not here to concentrate on MS. That’s not what I want to do.

MSers are not the only ones with SAD. And all SAD sufferers do no not develop MS. I want to write – as I always did – for everyone. People in general.

When I’ve been asked to place my blogs in a category, out of desperation, I’ve had to say ‘Society and Culture’. Not ‘Health’. What would be the point of that (I ask myself!)? We’ve all got to die one day. I’m just trying to find the best, and most honest, way to leave this world and get to Heaven, helping as many people along the way as possible. As I’ve mentioned before, the Internet, and blogs in particular, are a great aid to a housebound, would-be evangelist!

So, that’s what all this (blogging) is about.

Last week though, both genres were tied together in two very saddening stories.

The first (perhaps you saw it in the ‘papers) involved a young woman with PPMS who wants to end her life. Because of the PPMS. She wants to go to the awful, shouldn’t exist, “Dignitas” in Switzerland and swallow the lethal cocktail. Because she has PPMS.

Like I have PPMS. Always progressing, getting worse, worsening paralysis... yeah, yeah, etc. We all know the prognosis. It’s not good. and it sort-of IS the end of the world – yours anyway, as it shrinks down and down and leaves less and less life. Shrivelling too, for loved ones. As long as you have any left. The woman in the news does.

She has a husband, willing it seems, to love her unconditionally and take care of her. He doesn’t want her to end it all – yet.

Ay, there’s the rub, as Shakespeare would say (Hamlet iii. i. 65): apparently he’d rather wait a few years, until she’s really decrepit and useless (presumably) and then he’ll personally escort her (push her?) to her death.

The trouble is, by then, she might not be able to lift the glass. And the fact that he took her there would make him liable to prosecution and possible imprisonment [Suicide Act (1961)]. And quite right too.

Well, this is why the poor MSer is in the news. She is pleading with the government to get the law changed to enable him to take her without blame.

Otherwise, she will go alone and make sure, absolutely certain, that everyone knows it is suicide.

Because she has PPMS and isn’t willing to see it out.

Isn’t aware of her innate human dignity, the love of God the Father for each of His unique children, the eternal life of the soul. and the simple fact that only our Creator who gave us life has the right to take it away.

She has not learnt as a Christian that when Jesus taught us to take up our cross daily and follow Him (Luke 9:23), He was instructing us in the heroic goodness of redemptive suffering. Offering up our pains in prayer for others.

It breaks my heart and I feel very sad for this woman. I pray for her conversion.

And for all the others who have gone before her and will come after.

Which is how we get to the ‘Society and Culture’ aspect.

This “choice”, this ability to take our own lives, those of the unborn and the elderly. This secular enthusiasm for euthanasia is WRONG. Has to change. This is the tenet of the law that must be undone. Before the evil of our actions comes back to, literally, haunt us – in the next world.

My second sadness of the week – compounded with the rotten SAD – came from hearing that another PPMS friend (we MUST all be friends) has taken to her bed until the spring.

Now my first thought, of course, was to congratulate her. It’s what we’d all like to do, especially when the fatigue is such that it crushes you and prevents any action to begin with.

Apparently this friend (from an MS forum) has pressure-sores that maybe (I don’t know) have become infected and forced her to take up a whole new horizontal position for the duration. Pressure-sores (nightmarishly painful) are the reason given anyway.

But the trouble is I know – and so do many others – she’s been badly depressed and lonely for months. We’ve all done what we can, virtually, to comfort her and spur her on.

But she’s angry: her family (adult children) have all left and she’s alone. With inadequate carers (Social Services), paid to give her any attention at all. She feels totally unloved, but for the empathy she receives on the boards (and, yes, you’re right, I am “projecting”. But I’m also telling it how it is, which maybe she cannot do). And it’s all down to ‘S. and C.’.

Whatever happened to families looking after families?

Well, briefly, I surmise that this is what happens when God is removed from society. Replaced by the State (government as the ultimate authority). When people believe they’re their own gods and are free to make decisions for themselves. Blindly following the rules of the State as automatons still believing there is no ruler. As they work every hour God sends to make money for Mammon (god of this world – materialism) and, like lemmings, plod one after another leader, toward the cliff-edge and the black abyss.

When their only goal is an earthly Utopia of eternal youth and physical perfection. And they lose the capacity for selfless love.

This is what happened to families taking care of their own. They became ashamed of the frailties and inadequacies of their weaker members. Better to be gone.

And, if not physically (i.e. death, which as we’ve seen is now actually a feasible option) then, at least, under someone else’s care: enter the Welfare State.

In fact perhaps that’s when it started at the end of the Second World War. 1945. A welfare state (i.e. someone else to look after us), and we could all become parasites.

Women who used to tend the family at home, including often their elderly and infirm relations, were suddenly not so needed. Not so necessary. Their roles were unsure. Blurred by a lopsided “freedom”.

And then, of course, the birth-control pill. Easy contraception. The Anglican Church allowed “family planning”, first in “special circumstances” in the 1930’s and then, universally, without protest (Protest-antism is only anti the Catholic Church). And that was when God became whatever you wanted Him to be. And to many still is.

So women got “liberated”. Lost their feminine gifts.

And the rest is history.

And, boy, can I ramble. But I hope you see my point – any who’ve come this far.

It’s not just the time for SAD, it’s a very sad world.

And that’s why I was sad last week.

Onwards...

Happy Thanksgiving!

2007-11-22T06:56:00.000-08:00

Wishing all my (virtual) friends in America a happy Thanksgiving.

I hope everyone has a fabulous day and Lucy, at least, wishes she was there to share it - the food!

God bless you.

Love, Virginia x

Lucy is not going to be a pyjama case

2007-11-12T12:23:00.000-08:00

[Written Thursday, November 8.]

No, I can’t do it. I will not make Lucy give up any more of her body for the sake of human aestheticism or ease.

Today, Lucy will NOT have removed her womb and her ovaries. To be added to the furnace of poodle-parts, along with her tail (see previous post – I couldn’t stop that, this I can).

What would be left? An empty, disfigured sack. Hollow – even her oestrogen self gone. No personality, naughty and child-like. No chance of babies.

She would be no better than an unstuffed toy. A rag-poodle. Oh, horrors! A pyjama case.

In all that umming and aahing, wondering whether to get Lucy or not, how could I forget? But I did...

When I was, oh, about seven, one of the Christmas presents my parents gave me was a white, pink-ribboned, poodle pyjama case. With a zip, right up the middle of its tummy.

Exactly! Lucy would have a scar (you remember, I had this done many years ago (kept the ovaries) – I know what I describe). But, unlike the pyjama case, which you could open up to reveal a silky pink chasm, Lucy’s would (hopefully) close up to hide raw, severed flesh and a void where there ought to be life.

In one you stuffed pyjamas, in the other you would stuff food, as some sort of miserable substitute. She would get fat and dopey, dozey. Her bones would become brittle and break. She would feel no meaning to her life, other than to eat and love humans.

It might be easier, especially for my MS (as I said, her last season did seem pretty difficult (i.e. messy, long)). But I can’t do it.

And besides, she’s a pedigree: one day I might not be around (no ‘i.e.’’s needed!) and she may go to live somewhere where they can breed her with another, pedigree, toy poodle. Imagine that... more beautiful Lucys to give pleasure and companionship to the world. (There you are, you see, it’s an altruistic gesture!)

Right now, this minute, she should be in recovery at the Vet’s clinic. In a couple of hours Tom was meant to be going to collect her.

As it is, as usual, he is on his bed (says his room’s ready with his mate down the road but won’t go now – even when I tell him to!). Lucy is lying beside him on the floor (after hysterical “play” earlier). And I – well, you can see what I’m doing.

But I’m living for today. Each moment. And that’s the way it has to be. Which was the deciding factor in all this.

As non-constructive as it might seem to some, I’m afraid it’s better than watching poor little Lucy suffer. For no valid – necessary right now – reason. We’ll all get together later, or just Lucy and I will, and there’ll be some semblance of normality – for an MSer, which is hard to accomplish!

Also, I remembered, I never liked that poodle pyjama case. Wanted a real dog, of course. Well, that says it all doesn’t it?

And helped me make the definitive decision: Lucy is not going to be a pyjama case (and, besides, who wears them any more?)!

I cancelled the op. and we move (?!) on...

P.S. This doesn’t mean I don’t see the sense in spaying normally. But, don’t forget, Lucy is a “house-dog”.

Remembrance

2007-11-11T09:22:00.000-08:00

Please see my post in Comment Column of the same date and title.

Tom is such a hero...

2007-11-04T06:50:00.000-08:00

I was reminded of this again, last night, when I saw what he carried home, proceeded to put together, and got working.

But, to start at the beginning of the whole palaver, let me take you back to January ’06 (if I can bear it!). Fortuitously, two months before Lucy joined us.

I can’t remember the exact date but, anyway, it was typical of all that is that month in this country (the UK). Ergo: not Christmas or anything else good; dark and gloomy; freezing cold; scary (as is, to me, all winter, i.e. hypothermia/gas explosions), and too long.

A bad time. And with bad SAD (Seasonal Affective Disorder). Bad.

It was a Thursday. I do remember that, because Tom was forced to take the day off work. Six a.m. Not even dawn. Very eery.

And definitely not a time for someone with MS to be awake. But this is me. And I’ve spent years living independently (that is, many without another adult) and as a mother. As protector. Always on the look-out for danger.

The lights went out and I knew it. Perhaps it was just a light-bulb (we have one of those perilous safety set-ups whereby if one goes they all go – necessitating a trip to the fuse-box (cupboard-under-stairs) with a torch. (Great if, like me once, you’re on the loo when it happens, need to hold on to furniture to walk and didn’t actually take the torch with you! Very well thought-out for the disabled.))

I sat on the commode (MS joke!) in order to ponder this. I pretended. But in truth, it was obvious: no lights; no de-humidifier humming; nobody reading the Bible on TV [Sky 0134]. POWER CUT!

Power off. Panic most definitely on.

I must have sounded like a wild animal brought down by the hunter’s bullet.

And now I needed Tom.

I needed coffee (if I must be forced awake), warmth. Help. My head was vibrating, pulsating, stretching, shrinking, shivering, screaming.

Oh God (desperate prayer), why have you deserted me?

Get thee behind us S----! What is this un-Godly hour?

Anyone without MS won’t understand this but there’s something very horrible about the state of the lesioned brain without enough sleep.

And to a crippled, spastic body, the cold is unbearable.

Suddenly, madness, death, both are very real possibilities. And maybe preferable to the enormous effort it’s going to take to try to survive. It may well be easier to give up.

There and then, everything physical about you longs for that.

I grabbed the torch and “did” the cupboard, pointlessly, at the same time as banging and yelling for Tom. I was beside myself.

And he got up.

And put me back to bed wrapped in the swaddling-clothes of quilt after quilt and another sleeping-bag on top of the one I sleep in.

Then, oh mercy - and thank God I had the sense to get it - he put the Calor Gas heater on, turned it towards me and went to get dressed. Somewhere in the middle of all that he also managed to ring EDF and the council, who –it has to be said were (responsible?) most helpful. Yes, there was a problem. Was it everywhere (i.e.whole borough)? No, just your strreet. It would probably be off (electricity) till the afternoon. Sorry.

Just our street? Till afternoon? The poor wild animal needed putting out of its misery.Hypothermia would set in soon.

And next: genius! Tom went to the cafè to get take-away coffee. I couldn’t believe it. I’d never have thought of that. But Tom is an aficionado of local "cafs." and off he went, perfectly confident, and totally in charge! I was, and am still, so proud of him – for all this.

I had a ciigarette and saw through drawn curtains the sky turn from black to grey. It was not a cheerful shift of ambience, but the heater and candles (like magic!) gave a comforting glow - at least in this room (sitting-room where bed is). And soon it actually felt warm.

After a few minutes, the conquering hero returned and brought with him: two styrofoam cups of hot coffee, and, AND, ANND, a flask of boiled water. What brilliance! What foresight! What empathy... Apparently, I could have coffee and my usual herbal remedies, regardless.

Oh, how could anyone feel bad after that?

He brought everything to me (I was still huddled up on bed) and, as the hours wore on, we entertained ourselves with the “meter’s-run-out-of money” games we used to play, when he was young and before DLA (spare more thoughts for single parents – it’s very hard). It was quite cozy!

And by early afternoon – after "caf." food for him (he might have been enjoying this!) and crisps and biscuits for me – even I could wander about a bit (i.e. visit the bathroom/tidy up in the kitchen). The whole flat was warmer and there was a kind-of “we’re making it” aroma of gas and melted wax around the place. It was all right.

But it did start to get dark again and there were more worried ‘phone calls (though Tom had seen the men down the hole in the road so knew something was being done!).

It was eight whole hours after the first no-electric shock that suddenly all the lights came on again, the de-humidifier shook into life and the Gospel of John came out from the TV.

And the b----y council – or was it EDF? I’ll check – rang to apologise for all the inconvenience!

Well, I knew I could sue them. I knew I would have died without Tom. But, what can you do? I had to be grateful for my life and my son. So I offered it all up for anyone else who was cold (“Please God, look after the homeless.”) and asked Jesus to help us get on.

And He did. And I did. But didn’t forget it, and my fear of winter has increased. Plus, I am even less able than I was then. And Tom wants to leave.

So I looked into further means of self-sufficiency and got: a SURVIVAL KIT! From the Army.

And that’s what Tom brought home last night – all the way from his place of work where it was delivered (I can’t get to the door!). By foot and train and foot again!

A big, heavy box, containing a gas (cartridge) lamp, heater and cooker. As well as some toilet-tray pads for Lucy and herbal carpet shampoo for Lucy’s – accidental – stains.

And then he got them all working (except the shampoo - that will have to wait till Lucy’s out (groomer's not pub!) to give enough hours for drying).

And the kit is amazing: lovely little blue-orange flames providing light, heat, and coffee/food/hot-water-bottles. Survival!

So, at last, even though it is bleak, dreary winter, I can sleep at night. If I can still get up at all I should be able to keep myself alive and also, therefore, Lucy.

A bit longer anyway.

Tom is such a hero!

Shaggy Saturday

2007-10-28T09:13:00.000-07:00

They can be good, they can be bad and they can be very surreal – well, let’s face it if you’re not a sports-fan or of the Jewish faith they can be bit meaningless - but, whatever they are, Saturdays have to be dealt with.

For many years now, I have thought of this seventh day as the day everybody else has somebody else. In so far as I don’t see or hear (i.e. by ‘phone) anybody else. Invalid (in-valid?) that I am, stuck out here in the “pasture” that is almost Kent but really just the slower, quieter end of south-east London.

Oh, they used to pop in, at the old place, inner-city. One or two of them, once or twice just to salve their consciences (I knew it). Before things got a bit too obvious to ignore and their sympathy was forced, understanding feigned. Usually for about an hour (watch-watching), unexpectedly, on their way to somewhere else.

That was insulting. Yes, hurtful. I think, if you’re not careful, that sort of thing makes you bitter. But, hey, as long as you let them know you knew how it was and were happy anyway, everything was hunky-dory. And is – now that they’re nowhere to be seen – or heard.

It’s more honest and, therefore, much more easily tolerated. (But, while I’m at it, can you see why I find birthday/Christmas cards from these people so irrelevant and irreverant? Jesus told us, whatever we do for the least of His brethren (i.e. visit the sick) so also we do for Him (Mat 25:31-46). No one in my family - apart from Tom and brother Blob, of course - knows that scripture, obviously. And some of them ----- go to church!). Ah well. This is better.

And usually I wake up on Saturdays, filled with optimism. They’re my days. Free days (no official – i.e. social services/MS-related people. – ringing up. No council workmen outside or in). Just quiet and free. I can make of them what I will. And, neighbours allowing (dog next door, chldren upstairs), I’m going to make them good.

And Lucy and I will sometimes party!

Well, I say ‘party’. But that, of course, is normally all we do, say we’ll party. That is, I’ll say somehing like, “Let’s have a party today, Lucy!” and she’ll just look up at me non-plussed, but I like to thiink aware it’s a good moment. Indeed, sometimes I sound so excited and sure, she does jump up and down with enthusiasm. And, at least the mood is up-beat. we can go on from there.

Yesterday, though, didn’t look too hopeful. Things were decidedly ‘shaggy’.

It was dark outside – at ten in the morning – and when I, at last, managed to see clearly, on my second cup of coffee and cigarette, I saw the reality of the unkempt duo in the room.

Me – oh well, I’ve been a mess for a while. but seeing Lucy overgrown and slightly gray from too long without a shower, well, that was a downer. That upset me. Because there’s nothing I can physically do.

And there are reasons, and I don’t like those either

Normally the poor little thing would have been to the groomers in the past few weeks, but, ah, she just had her first full season. And it was horrible. In fact, so bad, that now I’ve actually booked to have her spayed. And I feel guilty and miserable, because it’s bringing back old memories (I had an hysterectomy for fibroids 23 years ago!) and can’t bear to see her go through any more suffering.

The first time was, apparently, at a few days old when – unbeknown to Tom and me (we’d never have allowed it) - the breeder and her vet docked poor Lucy’s tail ('...slugs and snails and puppy-dogs’ tails...’ Ha, now I understand the nursery rhyme!) How barbaric. And, thank God, the law was changed this year (when we learnt of this practice). It tears my heart to contemplate. .

Then, about a year ago, she spent a couple of days in hospital after chewing and eating too much of a Nylabone toy. Our faults. For some ridiculous reason (someone’s not very good at reading small print on labels) we had believed it was edible. What fools. She was violently sick for days and, we realised looking back, had been ill for weeks.

The vet eventually diagnosed ‘gastritis’ but I suspected a lot more: for a start she was put on an anti-fungal medicine; then there was the lining-the-stomach clay, and finally soft food – for a couple of weeks. I still imagine there is shrapnel in her throat when she makes funny noises sometimes, and in her gut. Who knows? But, anyway, I dread her going through something even bigger surgically-speaking. That time she even got an infection from the puncture wound of the anaesthetic!

It makes my stomach turn and I can’t sleep at night when I think about it.

I’m glad Lucy doesn’t sleep in here (sitting-room) with me any more. She actually chose some time ago to go in what was my bedroom with her crate - to get away from the cigarette smoke and commode sounds, I imagine. But maybe, also, just not to be woken up by late night home-comers (we’ll come to that)!

‘Glad’ because that time just missing her was painful. Hopefully this time she’ll be home the same day. As long as she’s well enough.

As you know, I have progressive MS, it gets worse. It has got worse since every other day there’s been. I won’t be able to help her as much as I did last time and that means Tom has had to take time off. And will need to be patient. And kind. And supportive. Oh, hell, it’s scary – can we do it? And what will be the goal afterwards if we do? For any of us?.

Oh poor Tom. He’s lived with me so long, keeping me going and “allowing” me to manage without carers who I (gentle!) would rather not have!

And now all this and giving up precious holiday-time from work.

Well, no wonder he drinks (but, of course, I wish he wouldn’t) - 27, with so much on his shoulders.

And that’s the second reason Lucy looks un-clean. It’s not easy showering a toy-poodle, who’s naturally a “water-dog”, when you’ve got a hang-over. You have to be able to share the euphoria and not mind getting very wet! It’s a bonding experience (one I’ll never have with her) which Tom usually enjoys and puts his all into.

But not recently.

And that’s why [another meaning of the word: ‘marked by a lack of order, clarity of thinking, planning and performance’] yesterday seemed such a ‘shaggy Saturday’. Dark and dismal outside. Not so bright on the inside. And nothing illuminating to plan towards. (except – God willing – Heaven!).

Ah, but you all know me better! Would I let it stay like that?

Heck no. Not if I can help it. And, by the grace of God, I may not be capable of much physically but when it comes to morale, well, that I can keep up. Mine and Lucy’s anyway, Tom doesn’t want to be cheered up here any more (he might want to stay!).

So, on went the light-box and off went the chatter: about the weather in Rome (still sunny, hot); about it being sabato there [related to ‘Sabbath’ - which of course it is, even for Christians though we might not call it such (isn’t that why we have the “weekend”; the Sabbath still for rest from work and Sunday (the ‘first day’ (Genesis 1:3-5) of the week) as the Lord’s Day to praise God? Makes sense to me].

And then, before we (I) went down again remembering the non-visiting family – sabato o domenica (Saturday or Sunday) – Lucy and I were moving through the day.

First - and most important - the herbal regime (see MS- My Scene (Oct 07)), with 'Daily Mass' from EWTN to keep me going through the rest...

We had ablutions to deal with: semi-strip-wash for me and brushing teeth; bowels from both of us – always the biggest bother of the day; pain (me again) to contend with as the legs grew more spastic wih the increasing hours, and fatigue.

Oh, but we also had nibbles: mainly Lucy – Kibble; more coffee/herbal teas. crisps and Hob-Nobs for me (though she wants them and I shouldn’t eat them: gluten/sugar!).

And the writing got going again.

And by 5 o’clock we were learning Italian. I was teaching “Lucia” a few useful words (humour me, dear reader!): “Andiamo!” (“Let’s go!”); “il sole” (you know that one); “Che giorno bello!” (“What a lovely day!”), and so on. Till Tom came home from work.

Looking shaggy, but in a good way (i.e. longer hair, tied back and five days growth on chin). Looks good!

And (very rare on a Saturday night) stayed in. And bought take-away curry, to enjoy while we watched ‘Napoleon Dynamite’ on DVD. Then he even played an alphabet game – “A-Z of places you’d love to visit.” Well, that was just perfect, matched the mood completely.

And hey, guess what, it turned out to be a pretty good Saturday and not too shaggy at all.

And today (Sunday) Lucy got her shower.

P.S. Is this a “shaggy-dog story”?

Well, literally, yes. Lucy is a ‘shaggy dog’. But, then again, no. I didn’t think of the genre till after it was written. (Thank you MS!)

In the long-run? Oh, probably. In my last, interrupted, “autobiography” I compare the attempt to Laurence Sterne’s The Life and Opinions of Tristram Shandy, and that definitely is.

We’ll see...

I never liked dogs...

2007-10-21T08:25:00.000-07:00

[A piece I wrote for the MSS book, MS TALENT (published next month) but pulled out for two reasons: 1) I could not condone their recent advertising campaign which failed to support the “progressives”, and 2) it’s the only thing I ever wote that made Tom laugh outloud!]

In fact I hated them. Thought every dog was male and every one, a rampant, raping, pillaging, pooing, parasite. At the very least – even if I couldn’t see them – they were barking, brainless (why didn’t they realise no one was coming and just resign, quietly?) noise pollution. At the most/worst they would bite me, rip me to shreds and leave me dead.

So what is this I now see sniffing round my crippled feet? What is this pair of brownest eyes looking up at me, pleading and tender in the morning light?

And, what, as I sip my wake-up coffee, is this strange sensation of wet-warm licking on my nerve-numb legs?

Is it a dog, Virginia? An actual canine living and breathing in the same space as you? Have you lost your mind?

No, just my body.

I don’t feel like moving today. Don’t want to move. The whole of my physical being cries out: “Leave me alone!” I just want to close my eyes and surrender to the end in peace.

And so, what is this, this bundle of curls, insisting I placate its demanding for food and affection. It’s the antithesis of everything I need, isn’t it?

Well, no. Apparently, aged 54, Virginia has learnt yet one more truth of the world: “A dog will love you unconditionally”. And so she does...

This toy poodle, who isn’t a “what” but most definitely a “who”. Lucy. The only one here, who still wants to be with me. Who suffers my struggles and staggers through the day, just as surely as I do.

And comes running, and licking and loving whenever it’s tough and she knows there’s a need.

And doesn’t mind – in fact, probably enjoys – that I am not washed. When every human being would, and does, turn away.

I look down to Lucy, from the chair I would be stuck in without her, and sure enough she looks up (with those eyes that are prone to conjunctivitis as mine are to optic neuritis) and meets my soul. And I ask her how she is, tell her everything will be all right. And we’ll get there in the end. Yes, of course, I am talking to both of us! And she jumps up, all energy where I have none. So I say, “Let’s get this show on the road!” and sort-of jump up. And she follows, little tail bobbing (I wouldn’t have let them dock the tail if I’d known that’s what they did - thank God now it’s banned) with enthusiasm.

Before I know it, I have fed her some Kibble, hydrated her with fresh water, cleaned up a poo (most in a cat-litter tray, a little on the floor) and given her a love – as I am licked clean by that cute little tongue!

And the day has begun and I offer it to God and thank Him.

And I remember Saint Lucy, the patron saint of those with eye problems and, also, writers.

I might write something today. Maybe tell how I got over my phobia of dogs. And why.

But not before we’ve both had Eyebright (the herb) in the kitchen...

Oh wow, I’m moving again.

In search of the end of the day

2007-10-21T08:07:00.000-07:00

[Subtitle - as it should have been to be true to Steinbeck!]

Steinbeck subtitled Travels with Charley, ‘In Search of America’.

Well, not for Lucy and me such grandiose ambitions. Oh no. Not for me a middle-aged frustration and rebellion against the end of my life. I’m content.

No, all we ask is to get from the beginning to the end of the day, without too much to contend with: no serious mishap or calamity to befall us (a tall order given that I’m falling about all over the place with MS and Lucy depends entirely on me!).

That, and for me to be able to do something, by God’s will, for somebody else. Even, as often, without seeing or speaking to another human being.

I thought the only way was through prayer.

But now we have blogging!

And suddenly the world has opened up. We can - in theory - talk to anyone. Anywhere.

Oh, just imagine bringing a smile to someone’s face through something you write. Or maybe helping, by example, with some annoying problem.

So, this is ‘where I’ve been’ (see ‘Intro.’ to this blog) - getting to know how to blog (which meant learning how to use the Internet first!). And it’s taken ages to get this far.

But I seem to have time – praise God!

And thank you Blogger, Google, Bill Gates et al. Lucy is especially grateful for a wider audience - more people to love and amuse!

At the end of the day I thank God for getting us there. And also for my lap-top and the ability to use it. (In this society where family is less tolerant of the infirm we need this virtual interaction!)

Then I lay down the cross of my physical suffering at the foot of Calvary.

It’s what our Lord asked us to do (Luke 9:23). And there’s a peace in that.

Amen.

How long is a piece of string?

2007-09-21T18:51:00.000-07:00

[Original introduction, drafted Jan 07, included for being the one that got me started. Where have I been? I will explain when I understand!]

So, whose bright idea was it to get a poodle? Well mine, I suppose. But that was it: an idea. I was diggle-daggling.

diggle-daggle (this is me putting it in the dictionary – it’s not there really!). v. to shake a gypsy clothes-peg with a length of knotted string attached to it while play-acting an imaginary life. *n. a gypsy clothes-peg with a length of knotted string attached to it (tied round neck of peg).

I manically diggle-daggled - first with bootee and then rattle, before my mother’s fateful design with the peg – from age nought to 11 when I took up smoking and more seriously the ball-point pen (I knew I was a writer by then). But the pegs were the stronger, and more available, drug until aged 13 when my first thought every morning became, “How many cigarettes do I have?” And hormones had kicked in and the family were making a move to another part of the country. Bad times. I didn’t actually give them up till then.

My first run-away occurred at 13 – hitch-hiked Somerset to Edinburgh – but that’s another story. And was then. I prefer now and the future

Just to add, on the diggle-daggle days: it was a painful parting. I still don’t know why I did it. But into the dustbin went this perfectly weighted and worn collection, one sad, final time. And it was good practise for giving up a son three years later and prescribed sleeping-pills 16 years after that.

But they too are other, very sour, stories written about elsewhere and not public yet.

On a much brighter note: only a couple of months ago, dear Tom, in an effort to wake me up and get me writing I suspect (as well as, bless him, finding me some comfort) located gypsy-pegs on ebay and bid for them all one jolly Sunday afternoon. And here they are. A beautiful, vintage collection from Liverpool (Irish descendency? Romantic caravans?!) complete with knotted string (again Tom) and I love them. The feel of them, just as I did.

But I don’t have the strength to shake them now. and Lucy keeps chasing them – of course. They sit on the book-shelves beside me and I admire them. And it’s comforting to know they are there. And shakeable!

Now I just day-dream things out. A sort-of metaphorical diggle-daggling. Until sometimes they do become goals and they happen.

Many of the scenes I diggle-daggled as a child became reality in later life. As though pre-ordained and I just caught a glimpse of their future. My own. I was acting out destiny.

In memory: diggle-daggling was special and always exciting. But there were those in the family (most?) who thought I was mad and didn’t understand that I was bored. Intellectually bored. They just “labelled” me delinquent and turned their backs.

I know now it was incomprehension on their part and I forgive them. But it made life difficult.

As did announcing I would be Catholic when I was nine.

I know, and knew, all these things were blessings, graces from God.

And in a “diggle-daggle” day-dream, after my first watching of “Crufts” on TV (I watch lots of stuff now I’d have ignored before, just because I can’t move easily out of this chair – and I didn’t yet have Internet) the idea of Lucy was born. And planned. We found a breeder (Google) with a pregnant bitch. Apricot colour. And the puppies came into the world.

Lucy literally existed and, in theory, was ours. Tom just had to "train it" from London to Crewe (and back!), choose a female, the best temperament for our dysfunctional home and pay a deposit. Which he did. And fell in love. And we have a gorgeous photograph of tiny Lucy, just three weeks old, curled up in his hand, again on the bookshelves. (How precious these Argos shelves have become. Filled as they are with nearly every book I studied for my BA when I was in my mid-40’s, and now decorated by the special mementos of our lives. They were the first piece of furniture Tom erected when we moved in here, just four years ago, to make me feel at home. God, what a good son. And brilliant buy from the great council-house store!).

Anyway, so Tom had chosen Lucy - and vice versa by the sounds of it and what I see now! - and that was when the arguments started. Was it a good idea to have a dog (“never call a poodle a dog, they take offence!” I read somewhere)? Practical?

No, of course not. But Tom was smitten. And I still loved the dream...

Roman apartamento - large enough for Tom to own half with his family. Companion poodle. Companion/PA/helper - live-in. Bells of a Basilica, pastoral priests. Pizza (preferably ristorante downstairs which – who! – can bring me my food if Tom is out!). Sunshine, warm. Sound of Vespas and cheering “Ciao’s” mixed with aroma of espresso coffee. Tinkling fountain in the courtyard for Lucy and her friends to splash about in. Red Ferrari for Tom to be a boy in. Oh, bella, bella! It goes on.

And I am kidding. For a while just the idea of a friendly poodle at my feet (never under!) was enough.

And you see the blessing of the diggle-daggle?!

We argued and neither of us was consistent. We kept contradicting ourselves and, more vociferously, each other.

Quotes from Tom during this time:

* “but if we don’t get her now it will be like a miscarriage”;
* “I went all the way up there.”;
* “we’ve paid the deposit”;
* (pained face) “but we bonded, she knows who I am”;
* “it would make us more of a family”;
* “I always wanted a dog”;
* (pleading expression) “but she’s cute!”.

Even my brother, Blob (family nickname - origin unknown!), who still visits, agreed it would be Tom who was heartbroken if Lucy didn’t join us. We should “give it a go”.

You know, try as we might to convince the world we’re hardened, heartless individuals, Tom and I really are a couple of softies. True sentamentalists. And the arguments truly were from the heart. Because we both loved the idea but were hurting from the knowledge that I had MS and might not (probably would not) be able to look after her.

And Tom wasn’t going to be around. He didn’t want to be because he had to be “young”. And that hurt him, that he knew he had to let us down (though the hurt wasn’t showing, only the resentment at my having presented him this dilemma).

It was horrible.

And then a friend of Tom’s, Richard, offered to take him up to Crewe, this time to collect Lucy and bring her back – to live! When she was eight weks old. Perfect.

The ulterior motive for Richard was that he wanted to try out his new Porsche. “Run her in”!

So, together at last, Tom and I said “Yes!”

It was all good. Except it wasn’t. On the morning they were to set off I changed my mind...

Once in a while I see the reality of MS. The reality as others – mostly officials who haven’t got it themselves but feign to be experts (i.e. neurologists and MS nurse) - see it: the given prognosis for PPMS – the progressive worsening of symptoms and deterioration to be expected. And of course, the more my body validates their conjecture the stronger my anger and denial become. Which, in turn, gives me energy and a burst of enthusiasm. I believe in miracles. I use herbal remedies.

But, this morning, as Tom was travelling across S.E. London to pick up his Porsche pal (dear Richard!) and after saying my prayers, I looked back, over recent years.

And that’s when it looks bad - and I have to admit
“they” know rather more than I want them to – when I actually look back at the decline and fall (often literal) of it all. In recent time.

You see, day to day, even though you are often aware you’re worse than yesterday, you don’t recognise that this is permanent degeneration. You may have a “good” day tomorrow. What you don’t want to realise is that a good day now is what would have been considered a bad day, even a year ago. But five years ago? Six, when I got the eventual diagnosis (2001)? It would have seemed catastrophic/soul-destroying.

And, of course, it’s not. You go with it – especially by following the cross of Christ’s crucifixion. You join Jesus by offering your suffering up, as sacrifice, in prayer for the world (“Redemptive Suffering”). And it’s not hopeless. It does have a point. You are useful.

But able to look after a puppy? Keep it clean? And the house? Train it? Not likely. It was a pipe-dream. No. Everything we’d done, almost certainly, was for nothing. All the books we(I)’d read, the room we’d got ready, the supplies; Richard volunteering to sacrifice his Saturday; Tom, in love with a cuddly “toy”. The whole notion was ridiculous. I’d be permanently in the wheelchair (waiting in the hall) any moment and bed-ridden soon after that – give it five years. Poodles live, on average, 15! This must not be allowed to happen...

I rang Tom up – mobile-definitive-decision: “STOP!”.

But he wouldn’t. Said it was too late, all planned. We couldn’t let Richard down or Anne, the breeder, or Lucy. I’d had plenty of time to say this before. (Well, I think I had, at least once, but maybe not with so much conviction.. It’s not something you want to make a habit of, admitting you’re a helpless cripple (only I can say things like that!)). And it was no good. He wouldn’t listen (probably didn’t even engage – that would have made him panic (not because of my state you understand but those reasons he gave above!)). Mumbled something about ebay if it didn’t work out (what, selling her like a cast-off coat?).

And Lucy was on her way!

And I was kind-of glad.

And now, as I write this, it’s ten months later – January 2007. And Lucy is curled up at my feet - the sweetest, calmest creature you could ever wish to meet.

And let me tell you, because I know I’ve gone on too long, how we reached this point..

Well, after Tom stayed home the first week with Lucy - rushing up and down to pet shops, visiting the vets and groomers to put all in place – and after we’d successfully (?) house-trained her (Anne had already got her used to cat-litter trays), during the day and a couple of evenings a week, I was alone. Humanly. It was just Jesus and me and a canine (albeit a very small, timid one).

And it was too much. The pain in my legs was excruciating. And the fatigue was, as is with MS, chronic. I had known physical exhaustion before when Tom was born by caesarean and I was put in a strange council-flat (for the first time) with a violent, Chelsea-fan, husband – I make no connection! Maybe even with MS. Probably. But this was worse. My stupid legs and fatigue were letting everyone down.

But the Good Lord urged me on. I added more cayenne pepper into my daily regime of herbs and kept going. But it was showing, and I was a bit worried. And did shout about finding her another home.

Tom though, still besotted and absolutely adoring of his little “sister” just - as usual - buried his head in the sand and left me to get on with it. If anyone was going to do anything to change things it would have to be me. Of course!

And so time wore on and Lucy and I grew closer – I was liking chatting to her (though I was slightly concerned it might spoil my silent communion with God). I started to see she was the “companion” everyone (including the MS nurse and priest) had said she’d be and that, in fact, she was saving my sanity – there just is too much being alone. She was helpful to all (?!) my other relationships.

And I began to feel, she too, was a gift from God.

Physically, it was – and still is – a nightmare, but golly gosh (where did that come from? Enid Blyton? ‘Bunty’?! I’m a child again!) it does do good for the soul to be putting another before yourself. And on that she insisted!

The only thing left to worry about – as long as I could keep standing – was my writing. Because without that I am not me. I do not recognise myself.

And that’s when - oh blessings! – I learned about John Steinbeck’s Travels with Charley. And Charley being a (standard) poodle.

Oh joy, joy! Someone (the great and prolific Steinbeck!) had written with a poodle at his feet, alone in a customised pick-up truck (wow!), roughing it across America.

Oh, could anything be more comparable to Lucy and me in our cramped little council-flat with our diggle-daggle dreams, struggling to get from ‘A’ to ‘B’? It was perfect. I would write Travels with Lucy!

And Tom, again, with brother Blob, came to the rescue. By the time I had proved the point by writing this in draft they knew enough of this former journalist to know that when she said she’d write a blog (or two!) she meant it and had better be set-up with the Net (spoilt or what?!).

I bought a new lap-top and the DLA (Disability Living Allowance) let me install wireless (at least I hope it did; having Lucy was already more financial burden than I was used to. But you know how it goes: “It will be an investment!”).

And the boys got it going.

Thus, I set off on a huge learning exercise: not only was I still training Lucy but I had to get used to this cyber-space thing. And peruse all the information on blogs. I had to study blogs. And then there was the odd forum to join and join in on. Very unfortunately, the MS Society’s Forum is totally addictive.

I had to learn to conquer the universal addiction to surfing the Net. Quite a task!

Anyway, there we were, the end of January. And, all of a suddden, for the first time, I could say: “Happy New Year!” and mean it. It was “All systems go!” (except of course for the Central Nervous System which was going but in the wrong direction!).

And, because it’s the kind of person I am, with prayer and a diggle daggle I am filled with optimism.

Lucy and I are on our way...

Blog Note: okay folks, this post looks fine here (Word) but now I have to paste it onto Blogger (I can’t see well enough to write on that screen!). Please bear with me and forgive imperfections!