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.

Coughing

[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.

Spasm - a rude interruption

SPASM!

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

PAIIIIIIIIIIIIIIIIIIIIIIIIN!

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

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

It’s insane.

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

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

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

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

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

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

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

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

God willing, I’ll catch up!

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

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

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

Bye for now.


























































































1

Happy Christmas!

Hoping this message finds you well.

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

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

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

In other words, a shambles.

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

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

God bless you.

Love, Virginia x

A post about a poster

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

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

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

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

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


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

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

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

So Tom took that plan seriously.

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

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


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

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

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

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

And he laughed.

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

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

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

I leave the rest to you, friends!



* Catechism of the Catholic Church (CCC) # 2413

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

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

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

Are you thinking Care Homes/Nursing Homes?

Please don't!

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

It won't get better than this!

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

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

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

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

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

We must maintain it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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