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 ( 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.

Every picture tells a story!

I thought you might like to see this picture.

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

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

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

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

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

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

Wednesday, 9 January 2008

Spasm - a rude interruption


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


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

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

It’s insane.

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

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

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

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

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

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

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

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

God willing, I’ll catch up!

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

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

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

Bye for now.