Dec 03 2012
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Daily Life

Woo Hoo! (Possibly, Maybe)

I woke up yesterday morning and felt strange. I had a shower, made coffee, put the cat out and still felt strange. I had….energy. How bizarre. Where did that come from?

After a couple of weeks of feeling punch-drunk with tiredness, this was altogether frightening as well as exhilarating. How long will it last? How many things can I cram into this window of opportunity?

I have to calm down and think straight. I rummaged round in the kitchen drawer and pulled out my list of ‘Things To Do When I’m Not Tired’.

I scanned through it. None of them will happen. I’m definitely not climbing a ladder to get the leaves out of the guttering. With my balance? And I won’t be painting the bedroom doors – what if I get hit with fatigue half-way through? The doors could remain semi-painted for weeks, months. So my revised tick-list is a little less ambitious. Cook dinners from scratch, vacuum through whole house (not just the bits I can see), sort out accounts, shred that pile of old paperwork and get rid of the cobwebs that have been tormenting me from the sofa.

The thing with MS fatigue is, when the door of energy opens, you have no idea whatsoever how long it will be before it slams shut again. A day? A week? My mind was buzzing. So many things to choose from. I could watch a complicated, subtitled film and actually follow it, I could attempt to cook a mushroom Wellington, I could dust off my Nordic ski poles and go walking.

I spent most of the day doing almost nothing, paralysed with indecision yet marveling at actually having energy and a clear head. I read half a book, as I had the energy to concentrate and not drift off. I wrote more lists of things I have to do. I caught up with my emails. I know I should have done a whole lot more, but I was just enjoying the sensation of being fully awake. The fact that I could do things if I chose to was enough for me. Being able to think straight without my head being full of cotton wool gave me a chance to get my head in order.

I have a busy week ahead. I’m hoping to keep the energy going and tick some more things off my list. Give me a break, eh, MS?

 

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Dec 02 2012
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My Ramblings

Stuff The Turkey

I don’t mean to be a grinch. I love Christmas. I adore the idea of roasting chestnuts, drinking mulled wine and wandering round Christmas craft markets munching on a German Bockwurst. So with this in mind, why oh why, with my last bit of energy, did I venture to a massive supermarket yesterday to pick up some bits and pieces to complete my Christmas shopping?

The Teenager was bored, so he tagged along. I left him admiring the huge 3D television and went off, basket in hand. The store was heaving. Trolleys piled high with crisps, cider, tinsel and frozen meals came at me from nowhere. Whole extended families swarmed around every display and crammed every aisle.

We don’t do Christmas in Britain, we just do sheer, unadulterated tacky commercialism. I used to live in Europe and they’ve got the right idea there. Christmas is a gentle time, a time for families to gather together, a time for reflection and handed-down traditions. Decorations are restrained and tasteful. Sweets, cakes and gingerbread houses are homemade. They don’t get paralytic on cheap alcohol and 3-for-2 party food.

Back in the supermarket, boxes of toys were teetering in trolleys. Ever noticed the cheaper the toy, the larger the box? Kids were screaming, stamping their feet, the adults looking on indulgently. ‘See what Santa brings, eh Britney?’ Waves of people marched with grim intent up and down the aisles, pushing past people, taking no prisoners.

There’s a panic surrounding Christmas in this country. The shops are closed for a day, yet we stock up as if we’re facing Armageddon. It’s easy to get caught up in it though. I found myself contemplating the special cheese display, weighing up which festive multi-buy pack to put in my basket. Hang on. If I don’t eat it normally, why would I suddenly buy it for Christmas? I also hate bread sauce and Christmas pudding, but I kind of feel I should get some, just in case.

I left the store feeling disheartened and slightly grubby. And what’s more depressing is that you just know the Valentine’s and Easter goods are waiting in the storeroom, ready to be put out on Boxing Day. Bah, humbug.

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Dec 01 2012
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Daily Life

Hitting the Brick Wall

I am still tired. But tired doesn’t cover it. I have hit the infamous MS brick wall of fatigue head on.

It’s darned difficult to convey the whole MS fatigue thing to people, but I’ll try. I go to bed exhausted and have nine hours sleep. I wake up feeling as if my head’s just hit the pillow. Overnight, someone sat on both my arms, leaving them numb and painful. The sensation in my feet disappeared, so I walk like a wonky robot, not quite sure when I’m making contact with the ground.

My head’s been stuffed with cotton wool and I’m feeling spaced out and disorientated. My balance is shot to pieces and my hands shake. I am so, so, so tired.

I went out in the morning to pick up my blood test results and some books from the library. I looked awful. The matchsticks keeping my eyes open kept falling out and I staggered to the counter in the health centre. Holding on for dear life, I managed to ask for the results, stuffed the envelope in my bag, went back to the car and sat for fifteen minutes until I could get my head straight. In the library, I struggled to get the books in my bag and headed for home.

Now I will spend the next five hours until The Teenager is home from school trying to pull myself together. Luckily the annoying PPI companies have taken the hint and stopped calling, so the phone is quiet. The post has already been delivered and the cat is out.

I can’t remember the last time I thought, ‘ooh, it’d be lovely to have a little afternoon nap – what a treat’. Now it is an imperative, it’s something I have to do, rather than wanting to do. There is no other option. The alternative is to be a raving zombie with red-eyes and gibberish for conversation. If I sleep for two hours, I may just be able to reassemble the spaghetti carbonara ingredients I had to shelve yesterday, ready to have a home-cooked meal on the table for when The Teenager comes back from rugby.

Life goes on and sometimes I feel it is just passing me by while I sleep, but tomorrow is another day.

p.s. I would love to hear how other MSers describe fatigue to people?? I’m running out of ways to explain…

 

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Nov 30 2012
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Daily Life

Just Another Day in MS Land

Here we go again. The relapse is-it-or-isn’t-it game is back. After a week full of energy, I am once more being held hostage by the sofa and daytime television. I am absolutely, ridiculously exhausted beyond reason.

I spoke to the MS nurse about this and she said that it was unlikely to be a full-blown relapse, more a temporary increase in symptoms, given that I had Alemtuzumab in the summer. This is supposed to cut down the relapse rate and therefore slow down the progression of MS. My spirits rose, until she added that it could still be a relapse though. I need to monitor things until I see the neurologist next week for my 6-month check up, but she thought the symptoms are more likely to be due to the stressful work situation.

Luckily, I had already completed my work quota for the week, the house was clean and The Teenager’s rugby kit had been washed, so even though it was incredibly boring , at least I wasn’t panicking. Too much. And when I say boring, I mean really, really boring. Too tired to read, I watched inane telly – lots of people with antiques, people rubbing their hands in glee at buying a cheap house at auction, shouty people shouting at other shouty people and ghoulish people chasing after other people’s inheritances.

When I wasn’t watching telly, I was sleeping, as I was too bored to do anything else. A whole packet of chocolate toffees somehow disappeared. I once again counted the cobwebs on my ceiling and admired my Christmas decorations from the sofa. The biggest problem I faced was cooking dinner when The Teenager got home. I had bought ingredients to make spaghetti carbonara . Not that difficult – bit of cream, Parmesan, bacon and a couple of eggs.

Feeling like I’d been run over by a juggernaut , it became a Herculean task. I briefly wondered if he would notice the difference if I made Super Noodles instead. At the last minute, I decided to kill two birds with one stone. Cancel the cooking, put away the ingredients and collect some Teenager brownie points. We had a chippy. I will make the carbonara tomorrow.

 

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Nov 29 2012
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Symptoms and Treatment

Needle Fiddle Faddle

Until my epidural, needles held no fear for me, but trying to stay completely still whilst being racked by labour pains is no laughing matter. I swore off needles for life, there and then. Ha! Now it seems needles feature quite a lot in my life, another side-effect, brought to me courtesy of MS and yesterday I was off to the surgery for another blood test.

Last year, on the basis of a suspect MRI, I was whisked off for a lumbar puncture. People are divided about these. Some have great experiences and sail through them, tutting loudly and wondering what all the fuss is about at us lot who scream their way through them. It wasn’t the doctor’s fault that he’d never done one before. The needle (huge, vile thing) kept hitting bone. No words could possibly begin to describe the pain.

Over an hour later, I loosened the grip on my mum’s hand, tears pouring down my face, in absolute agony. And if I thought that was horrific enough, worse was to come. The skull-crushing  lumbar puncture headache. It lasted a week. It literally (and I don’t use that word lightly), felt like my brain was being squeezed. Probably the most painful experience of my life.

This summer, whilst in hospital having Alemtuzumab treatment for MS, I had a cannula inserted and it was to stay in my hand for a week. A week!! I managed four days until it fell off in the shower, recreating a massacre scene, blood spurting everywhere. As part of the monitoring process, I have to have a full blood count taken every month for five years, plus I’m due my second and hopefully last dose of Alemtuzumab next year.

I’m an old hand at this now –  every time I see a doctor or nurse, I automatically roll up my sleeve.  Is it slightly sad though,  to be disappointed not to get a sticker for being so brave?

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