Wednesday, 2 December 2009


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…

Wednesday, 18 November 2009

And for my latest trick...

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.

Wednesday, 5 August 2009

So, what happened to July?

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.

Friday, 5 June 2009

Today I am thinking about warp-drive

"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 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.

Friday, 17 April 2009

Lost - in more ways than one!

[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?

Thursday, 16 April 2009


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.

Tuesday, 31 March 2009

Down and down, round and round we go!

[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!

Thursday, 5 February 2009

Keeping each other warm

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.


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.


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.

Sunday, 4 January 2009

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

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!