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?

Cover-up

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!

[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

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!)

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!

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?

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