Tag Archives: fatigue

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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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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Fatigue Management for the Weary

fatigue management for the wearyI was invited to join an MS Fatigue Management course, which started yesterday. The aim is to discuss strategies for coping with fatigue, the impact it can have and to meet people in a similar situation. Our little gang is now proud to be launching a new campaign – to redefine MS fatigue/tiredness/exhaustion as ‘Clinical Fatigue’, in the hope that we will be taken more seriously.

Let me explain. Fatigue is one of the most common symptoms in MS and around 80% of us have it. There is a medical reason for it – the demyelination in the central nervous system and is the result of the disease process of MS. Ok, technical bit over, now the day-to-day reality. MS fatigue is like being run over by a big lorry of tiredness and squashed flat. It can strike out of nowhere. It can seriously get in the way of life and is similar to how you would feel if you were awake for 48 hours non-stop.

So why the song and dance? Well, it’s just so darned difficult to convey to friends, family, work, random strangers that this is extreme tiredness. Off the scale in intensity. Typical conversation:

Them: How are you today (looking me up and down). You look good?

Me: Oh, I’m cream-crackered. Exhausted.

Them: Yeah, know just how you feel. I was pooped last night.

Me: No, I mean really, really tired.

Them: God, yeah. That’s like me every day. But you look so well!

Me: I’m off to bed…ta ra.

It’s frustrating. I would bang my head against the wall in frustration if it didn’t make me so tired, and anyhow,  there’s enough damage in my brain already.

The course was excellent and I met some brilliant people. It’s refreshing to hear that I’m not making it up, the tiredness is not me being lazy, or me going mad. This is why we want to campaign to redefine MS fatigue, give it a proper, medical name. So from now on, we will be referring to it as  ‘Clinical Fatigue’, to give it the gravitas it deserves.

I would go out with a placard and march up and down the street, but I am exhausted and I’m going to squeeze in a quick nap before The Teenager gets back from school…

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Rugby Mum…..And MS

Rugby MumI like The Teenager playing rugby. He won’t mind me saying he was pretty dire to start with, a couple of years ago, but he’s nothing if not determined. Now, he’s got real promise and has offered to buy me a luxury penthouse granny flat if he becomes famous.  Only problem is, I don’t understand the game at all.

Before MS, I would duly stand on the sidelines, muffled in a couple of layers of jumpers, wellie boots on and teeth chattering. I took my cue from the screaming crowd, and cheered along when something happened. Sometimes for the wrong team, but never mind. I schlepped to every game, took him to every training session and washed a pile of muddy clothes twice a week.

We even went ‘on tour’ last year, aka an excuse for the parents to let the kids run wild while we got blind, steaming drunk. So drunk, that I was nominated to go first on the karaoke, where I sang ‘Gold’ atrociously and still got applauded. And we had to wear silly hats all evening.  This was right before my first major relapse and there was an inkling there was something wrong when I went bright red in the face after a leisurely stroll and my legs turned to jelly.

So now, post-MS, the rugby routine is a little different. I still take him training and I still wash his kit but there’s no way I can go to every game. I can’t stand up for long, I’m normally tired beyond belief and my legs get too weak. If there’s an away game, I have to ask for The Teenager to have a lift as I don’t drive too far – my foot cramps up. Which is awkward, as every time I see one of the rugby parents, they scrutinise me closely, look me up and down and say, ‘But you look so…well?’  A code phrase for, ‘lazy cow, any excuse, eh?’

Yesterday, the game was cancelled as the pitch is saturated with rain. Am I unhappy? What do you think……

 

 

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MS Buddies

best friends foreverOver the past year, I’ve met a whole bunch of people I would otherwise never have crossed paths with, from all walks of life and all ages. Our common feature is that we all have multiple sclerosis.

As a side effect of this horrible illness, it’s by far the best one. Having the diagnosis gives you a free pass into a whole new world. There’s online forums, local support groups, telephone helplines and charities devoted to fighting on your behalf.

When you first meet a fellow MSer, there’s always a quick exchange of your MS journey, i.e. ‘diagnosed last year, relapsing remitting, taking Tysabri, what about you?’ before chatting away as normal. And when you say you’re tired, they get you right away. The MS fatigue, the bane of my life. I can’t describe it to people who haven’t had it. The closest I get is to liken it to a massive energy switch being switched off internally and it can strike out of the blue. You have to sleep. Now.

So there’s something really refreshing about getting together with other MSers. You belong. You don’t have to explain. You can just have a good old whinge.

I went to the local MS Society Christmas party yesterday. There was a huge buffet and a pub crooner for entertainment. We sang along to ‘Delilah’ and sat in two long rows of tables, a disparate bunch of people. I only knew a few people there, but had a good catch up with them and we kind of understand each other. I might not see them again for a couple of months, but we’ll just pick up from where we left off.

But my friends from BMS (before multiple sclerosis) are equally important. They’re the ones who tell me to stop whinging, shut up and pull me back into normal life again…

 

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