Tag Archives: relapse

Nov 23 2012
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Symptoms and Treatment

An Unwanted Duvet Day

Just when I think I’m doing pretty well after the Campath (Alemtuzumab) treatment I had over the summer, along comes a day when it all comes crashing down.

I’ve been feeling more and more tired over the week, the numbness and tingling has increased, I’m stumbling more than usual and I’m not in complete control of my body. I haven’t had a week like this in months and I hate it.

Yesterday, I woke up, got dressed, saw The Teenager off to school, went to the shop for a paper and some yoghurt then went home and back to bed. And that’s it. This is as bad as the darkest days I had at the beginning of the whole MS business. Will it last? Is this just a blip? I can’t even begin to say the word ‘relapse’ out loud for fear of jinxing myself.

Everything is difficult. I lie for hours, knowing I need to get up and work, cook lunch, catch up on phone calls. But some inner force is pinning me to the sofa. My limbs are heavy, I feel like I’ve been run over and I’m getting worried. Lunch was hysterical. I only had pasta and a jar of pesto in the house and normally I could rustle that up in five minutes. Yesterday, it took me an hour. Set the water on the hob, go and lie down. It boils, I put pasta in, go lie down. Pasta boils over, turn heat down, go lie down. Pasta is cooked, I leave it in the pan for half an hour and go lie down. I drain the pasta, add the pesto and heat up. Leave on side, go lie down. Re-heat in microwave. Go lie down and fall asleep.

If this sounds incredibly boring, it is. It’s soul-destroying. And lonely. I dread seeing The Teenager’s face when he comes back from school. He will take one look at me and know. Mum’s tired. How depressing.

Fingers crossed this is temporary and it will be business as usual very soon. I will cook The Teenager a mouth-watering roast at the weekend, I will do the housework (even the ironing), I will dust away all the cobwebs I counted while I lay on the sofa. But for now, I’m off to the sofa for a quick lie down. Again.

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Nov 12 2012
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Symptoms and Treatment

Relapse Hide and Seek

playing hide and seek with a relapseMost of us with relapsing-remitting MS will be familiar with examining every tiny little symptom and asking, ‘is this a relapse or am I just being over-sensitive/paranoid?’. We live in constant fear and easily forget how, pre-MS, we got sick anyway and sometimes we felt under par or just generally a bit rubbish.

Post-MS, the situation shifts. A relapse is bad news. They can last for as little as a few days or for as long as several months and initially the symptoms can be confusing. I can quite honestly say, I have never analysed my health in so much ridiculously fine detail. I wake up every morning and lie there for a little while mentally scanning through my body. How do I feel? Anything odd? Ok, get out of bed. How’s my balance? Am I a bit more wibbly on my feet than usual? Standing in the shower, can I raise my hands ok? It is constant.

One day, I woke up from an afternoon nap in blind terror. My left hand was numb. I couldn’t move it at all and I began to panic – how would I change gears in the car, how could I go shopping with a dud hand? You can imagine how stupid I felt when I realised I had slept on it.

So I play a constant game of relapse hide and seek. If I pretend there’s nothing really wrong, well, there’s nothing really wrong, is there? I’ll just stay one step ahead of the game. MS is like a constant heat-seeking missile, on the prowl, stalking you all the time. Just for fun, you can also have a pseudo-relapse, a temporary flare up, commonly triggered by stress, heat or exertion.

I think this is what happened to me last week. I had a friend over for wine and a gossip, but I felt odd (before the bottle was opened….) – a spaced-out feeling I normally get at the start of a major relapse. I tried to shrug it off and laugh about it, but in the back of my mind, I was running away and hiding. Fast. Luckily, it came to nothing and I woke up fine the next day.

For now then, I am relapse-free and I hope to remain so for a good time yet. Until we meet again, Mr Relapse, go away and leave me in peace….

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Oct 14 2012
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Daily Life

Under Construction

I can think of a million and one lovely things to do on a beautiful, sunny Saturday. The Teenager is spending the day with his dad and I have the house, and time, to myself. There are museums to visit, shops to look round in and I need to pick up some books from the library. So why am I dressed in builders gear, thick gloves and Timberland boots, twirling a spirit level?

The good news is, I seem to be in remission at long last and a builder friend needs a bit of help with a last-minute job. It’s all quite technical, but it involves two steel lintels, lots of cement, nails and bits of wood. If the job isn’t done properly, the house will collapse in on itself. Or something.

My main roles are chief sweeper-upper and go-fetch-from-the-van person. After a long week of office work and study, it’s surprisingly good fun, this building malarky. I think I sometimes forget how satisfying it can be to do physical work, never more so than after months and months of mind-numbing exhaustion from a relapse. Suddenly, I feel refreshingly, alarmingly, gobsmackingly alive. My arms and legs seem to be behaving and I’m actually doing something useful.

Plus, I get coffee, breakfast, lunch and the odd Snickers bar thrown in – always a bonus. When I’m dropped home, I rush to the shower and it’s never been a nicer one. I’ve had an excellent day and I feel as if I’ve had a full-body workout – another bonus. So now, as I am about to lounge on my sofa for the rest of the evening, I kind of feel I deserve it.

Would I give up the day job though? Not a chance. My friend’s last job was fixing a roof. In torrential rain.

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Oct 02 2012
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Work and Studying

Back to school

It’s Autumn, it’s night class season and I’m ready. Tonight will be my third week back at school. I spent hours carefully selecting a new course, paid my money and filled a trolley at Staples. New notebooks, new pencil case, lots of pens, paper clips, highlighters, folders but managed to stop myself from buying a Hello Kitty school bag to put it all in.

I have a chequered history of night classes. A couple of years ago it was knitting, in a bid to join a Stitch and Bitch class in the local cafe. In my fourth lesson, the lovely teacher looked at my homework, sighed and shook her head sadly. Last year I tried a one-day course instead, learning how to make my very own Christmas wreath out of locally-source willow branches. Along with ten other eager beavers, I grabbed six foot lengths of the stuff, ready to bend it into a circle but ended up poking a rather serious-looking woman in the eye. My finished wreath was a square of twigs, held together by an awful lot of thread and withered on my door after only a week.

This year will be different. I have moved on from crafts and have chosen something scarily academic – a new language. Which is kind of ironic, as my first major relapse involved me losing the ability to string a sentence together (The Teenager still does a great impression of me). Ever the optimist though, I am determined to master it. So far, I can tell native speakers that I enjoy coffee and swimming and hockey (!), and there’s still 28 weeks to go.

I am a bit of a swot, always keen to get my homework done and learn new words, and have got into the habit of sitting in the car during The Teenager’s rugby training listening to a downloaded course. Note to self though – must get out the habit of sticking my hand up in class. There’s only four of us, I am in my thirties and the teacher is probably younger than me.

The best bit though, is that there is a Starbucks on site, so I can sit for a while before class, supping on a large double-shot Americano, checking over my notes and polishing an apple for the teacher.

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