Tag Archives: fatigue

Jan 24 2013
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Daily Life

Fun In The Bathroom

The snowpocalypse has meant I have spent an awful lot of time at home, which has given me an awful lot of time to stare at the mould creeping along my bathroom walls. Finally, I have had enough.

In the old days, pre-MS, I could paint the bathroom in half a day, whizzing around barely stopping for a breather. This time, I will need to approach the project with caution, precision and a battle plan.

So, the other day, I began. After trudging up to the doctor’s for my blood test, I trudged back to the paint shop. I had done my research, and I knew I needed an anti-mould solution, an interior seal damp and finally, paint, so I asked the guy for help finding them.

‘But why do you need all that stuff?’ he asked. Well, the bathroom is exploding with mould, it’s horrible. ‘It can’t be that bad, surely, how old is your house?’ Oh dear. Obviously women shouldn’t know anything about painting or preparing surfaces, yada yada yada. I gave him my best steely look, gritted my teeth and informed him the house is 160 years old, the window sills are over a foot thick and if the damp has gone in that far, I’ve got a serious problem.

He gave in, but got the last laugh, thrusting a couple of paint brochures into my hand before I left, saying ‘here, take these, they’ve got some lovely pretty colours in there.’ I stomped home in  a mood. I don’t care if I paint the bathroom in ‘ocean ripple’, ‘chic shadow’ or ‘urban obsession’, as long as it gets done. If I had my way, I’d paint it all black so I’d never have to see the mould again.

Anyway, I am all set to go, but nothing has been done. Three reasons: my arms get tingly and numb if I hold them up for too long, my balance won’t be the best on step-ladders and I worry about suddenly get tired half-way through.  The guy in the shop didn’t quite succeed in making me feel completely stupid and girly, but MS certainly has….

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Jan 15 2013
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Work and Studying

Why Work?

Quite soon after my MS diagnosis, a few people asked me when I would be giving up work. I was stunned.

Surely now, more than ever, I would need the security of a routine, wages and the confidence boost a rewarding job can give? It seemed to me that to stop work was an old-fashioned view and had no place in the 21st century, when there was so much understanding and support in place.

I stand corrected. Recent research uncovered the depressing facts:

  • More than 75% of people with MS report that the condition has impacted their employment and career opportunities.
  • Up to 80% of people with MS stop working within 15 years of the onset of the condition.
  • Up to 44% of people with MS retire early due to their condition.
  • People with MS lose an average of 18 working years, assuming a retirement at 60.

The report states that with the right support, people with MS could continue to live full and productive lives for much longer, yet during periods of economic downturn and job losses, people with long term health problems feel especially vulnerable.

Research shows that many employers lack knowledge about the condition and may not always understand that the needs of employees with MS can and should be accommodated in the workplace. MS is a ‘hidden disease’ and the extent of its impact is not visible to others and over 80% of us are affected by fatigue.

In my case, my chosen career path has veered off in a completely different direction than pre-MS. I was steadily building towards a new career once The Teenager was old enough for me to work full-time. I am a matter of months away from completing my second degree.  It’s ironic. Just when my whole life was opening up, when I could put the years of child-care behind me and finally take on a much fuller role in my career, along comes MS and puts paid to my plans.

Life has a funny way of turning round and smacking us in the face when we least expect it. I could either crumple or make the best of a whole new situation and right now, I’m planning to work for as long as I possibly can.

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Jan 09 2013
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Symptoms and Treatment

Toilet Humour

I spent most of yesterday sitting on a toilet in work. Ok, it was unplumbed, yet strangely comfortable. We are in the middle of fitting two bathrooms and ran into some problems, so a lot of the time we were hanging around discussing how best to fit the pipes.

This was quite handy as I had yet another one of those out-of-the-blue MS crashing waves of tiredness and wasn’t fit for much else, bar a gentle spot of sweeping up, resting my elbows now and again on the handle, head to one side.

Typically, I was full of energy the day before, and was whizzing round the shops with my mum, stocking up on sausages, body spray (an absolute essential  for building work) and printer ink.

And that’s the really annoying thing about MS – the sheer unpredictability of it. It’s just so darned inconsiderate. MS has appalling manners. There’s no point booking anything in advance as you haven’t got the foggiest clue how you’ll feel on the day. My most common phrase is, ‘can I let you know?’

If I arrange to meet a friend for coffee, I pray the night before that I will wake up with some energy. I can’t remember the last time I went out with friends on a Friday night and at our age, it’s so hard to do anything spontaneously, when I do have the energy – babysitting, work, lack of money, can’t be bothered, etc.

So yesterday, the wave hit me around midday and I could pretty much write off the rest the day. I know the score. Get home, rustle up some dinner for The Teenager, quickly wash the dishes and lie on the sofa for the evening. Boring. If I’m lucky, I’ll have a few magic pockets of energy where I’ll suddenly leap from the sofa and dash round the house doing as much as possible in the least amount of time before crashing again.

Anyway, this job should be wrapped up by early next week, then it’s on to the next one. Variety is the spice of life, and at least I now know how to plumb a toilet….

 

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Dec 29 2012
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Work and Studying

Sore All Over, But Happy

This building lark, eh? It all looks so easy. Long tea breaks, late starts, leaving early and banging a few nails in here and there. Well, I think I landed a job with the strangest builder ever. He does not stop. He does not take tea breaks. He eats lunch on the go. And I had a 7 am (!) start.

My first day on the job and we are renovating an old country pub into a house. All I have to do is knock down a few walls and tidy up. How hard can it be? Well, I flung myself into the task with abandon, hammer moving so quickly it was blurred. Lathe and plaster flew in all directions, dust went everywhere and I filled black bag after black bag with rubble. So far, so good.

The owner was a wonderfully eccentric lady, who for some reason insisted on calling me Alan. For the record, I have shoulder-length blonde hair and do not have a moustache. I managed to bring down most of the wall by just after lunch (a packet of Fridge Raiders eaten on the go), but when I finally stopped for a break, everything – and I mean everything – ached. I was using muscles that haven’t been so much as gently twanged in years.

The upside is that I stood outside at one point and just breathed in the fresh air. It was an amazing feeling to do such physical work, after over a decade in an office. There’s something to be said for being able to pop outside and just be still for a moment and it was good to chat away about something and nothing with my friend – no office politics, just having a laugh.

The downside is the fact that MS never takes a break. Whenever I got too hot, I had to cool down. My feet buzzed incessantly. I started to get electric shocks in my neck. But if I had to weigh it up, I would say that the symptoms were worth it. Ok, every single part of me is sore. I feel like I’ve been run over. But MS can make me feel that way too.

I am working today too, then I’m off for three days. The Teenager has made it safely to London and he didn’t find my Twiglets. Life is looking good.

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Dec 27 2012
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Daily Life

Excess All Areas

I have had an excellent Christmas. It may be getting harder to squeeze into my jeans, but you can’t go to a family get together and suck on celery sticks, can you? I have eaten thousands and thousands of calories over the last few days and have enjoyed every single one of them.

The Teenager rolled up his sleeves and helped serve Christmas lunch to forty-odd pensioners on Christmas Day, bless him. He was a bit shy to start with, but got into his stride and was soon happily scooting round, doling out roast potatoes, slices of turkey and carrots. Everyone agreed that he was ‘a very nice young man, very nice, and ooh, so tall, what was I feeding him, Baby Bio?’

There was only one awkward moment. We all had to gather in the hall and sing along to carols. A woman went round with a box full of musical instruments and feeling very Christmassy, I grabbed a couple of plastic maracas and enthusiastically shook them along to ‘Jingle Bells’. Unfortunately, I was still shaking them in tune to the next carol, the sombre  ‘In The Bleak Midwinter’  and The Teenager was mortified.

On Boxing Day, I went out for the newspapers early and had to pick up some wine for a party later on. Believe me, it’s very embarrassing paying for two bottles of wine at 8am when everyone behind me in the queue is buying satsumas and milk. Especially when my hands are playing up again and the wine bottles rattled in my bag as if I was having tremors from alcohol withdrawal.

Anyway, MS-wise, I’ve been more tired than usual and have spent endless  hours lolling around on the sofa, wrapped in a duvet. My feet have been buzzing more and the foot drop is driving me mad. I also had a spectacular argument with my bookcase. The bookcase won and my upper arm is covered in a violent purple bruise and throbs incessantly.

Apart from that, I am looking forward to more days of too much of everything. I have two very large boxes of chocolates that I feel compelled to eat and a bag of Twiglets in the cupboard, just in case. What more could I possibly need?

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