Tuesday, 25 November 2008

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!

Tuesday, 21 October 2008

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.


Sunday, 7 September 2008

Luc(k)y we threw those drops away!

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!

Monday, 28 July 2008

Talk therapy

[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.

Monday, 7 July 2008

Bloomin' poodles!

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.

Monday, 30 June 2008

Virginia is such a heroine!

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”!).

Thursday, 19 June 2008

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

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.

Sunday, 1 June 2008

It never rains...

…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.

Thursday, 17 April 2008

Time to move on

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!

Saturday, 5 April 2008

Magic boxes [last post of three!]

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.


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?

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...

Monday, 24 March 2008

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

[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!]


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.]


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...

Thursday, 20 March 2008

Easter 08

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

Thinking of you all at Easter.

Love, Virginia

Thursday, 6 March 2008

Still a quandary...

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...


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.

Tuesday, 26 February 2008

The man next door

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?

Friday, 8 February 2008

A touch of anthropomorphism

[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

Monday, 21 January 2008

Is multiple sclerosis (MS) psychosomatic?

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?

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.

Tuesday, 15 January 2008

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

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

Sunday, 13 January 2008

Christmas 07

[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.

Saturday, 12 January 2008


[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.