Tag Archives: fatigue

Dec 13 2014
4 Comments
Symptoms and Treatment

What’s MS Like?

movingHmm. As they say, every person with MS has a unique set of symptoms, so no two are alike.

However, I get asked a lot, ‘what does it feel like to have MS?’.

Quite possibly the hardest question ever.

Imagine this: you wake up every morning, flex your hands, feet, arms, before stumbling out of bed.

What works?  What doesn’t? You find your phone. And drop it. Curse. Paw the carpet to find phone then trip over shoes, falling into the landing and ending up face down in the laundry basket.

Sway downstairs, knocking into the bannister. Weave your way to the kitchen. Coffee. Think about a shower. The pitfalls. Take a deep breath. Teenager has used your expensive shampoo. Again,

Consider nodding off at kitchen table. Sort lunch money, blazer, Teenage Tantrums, lost paperwork. Head to work.

Fall asleep in van. Yawn a lot. Mix up numbers, measurements, tiles. Find a quiet corner.

Back home, dread cooking a meal and dream about a private chef. Make meal, clean up, ignore leg pain, can’t ignore hands, drop everything. Clean kitchen floor, badly.

Essentially, MS is a surprise. Who knows what I’ll wake up to? It could be tripping, falling, stumbling, umming or ahhhing. My brain seems unwilling to move on from my first recorded relapse, the one that affected my speech. I mean, me? It’s almost an insult. Especially when I try to reply to the good-natured building site banter. ‘Oh, yeah, give us a minute, yeah, and I’ll think of somefink witty to say’. Too late.

MS is an oppressive bully who just won’t give up. MS will push you around, kick your feet from under you, prod you, squish your memory and generally make your normal day-to-day life a living nightmare. It will make you incapable of paying by cash (my nightmare). Coins scatter everywhere. It will make you nervous at checkouts (um, can you slow down, just a little bit?).

MS is a malevolent shadow, mimicking your actions with a macabre comic touch. Anything you do, MS will magnify. A slight stumble on a doorstep will become a massive trip through your own front door. A twitch will become an embarrassing tic you can’t get rid of. You will fall out of cars, trip into stores and scan the pavements for cracks. And in amongst it all, there will be the Clinical Neurological Fatigue (TM).

And that’s the next problem. Try explaining that to people. ‘Yup, I have to sleep a lot’.

‘Oh, me too. I love sleeping. You’re so lucky!’

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Dec 11 2014
8 Comments
Symptoms and Treatment

What Do I Do Now?

mazeI had an appointment with my wonderful MS nurse yesterday. The situation as it stands is: I was diagnosed with rapidly-evolving MS and have had two courses of Alemtuzumab, just before NICE licensed it for MS patients.

They recommend only two courses, whereas there have been people who have had a third or fourth course before NICE. Hmm. Can I have a third?

Please? Pretty please? I won’t complain about the hospital food?

Well….. Oh. Can I take anything else? I had a relapse in February?

Well, there is Tecfidera.

Yay!

But this Trust won’t give you it. Oh. Any new problems? The nerve  and muscle pain in my legs has increased terribly. Every single evening, I’m in agony. Thank heavens for my automatic car, lol (this is where, for some bizarre reason, I imitate driving a car).

Well, there is Sativex, licensed for use in Wales.

Yay!

But this Trust won’t give you it.

Oh. You can see where I’m going with this.

I asked about Tysabri. No good, as I’m now – thanks to Alemtuzumab – not deemed as having rapidly-evolving MS. Vicious circle? So what are my options? At the moment, purely symptomatic. I don’t qualify for any disease modifying treatments.

My health is deteriorating. I know it shouldn’t, given the Alemtuzumab, but I also shouldn’t have had a relapse seven months after my last treatment. Don’t get me wrong, without Alemtuzumab, who knows where I would be now, and I will be forever indebted.

I pleaded my case: it’s only thanks to this medication that I am still working, still taking cheek from The Teenager, have enrolled in further education. And still  manage to push the vacuum round every now and again.

No go. I left, by way of the WHS outlet, where I bought a trashy magazine to cheer myself up. Got to the car park and realised I  had left my card in the payment machine in WHS. Schlep back, cry a little when talking to WHS member of staff who finds my card. She says she sees it all the time. I buy a chewy healthy bar and leave.

Get back home, letting it all sink in. I had explained to my lovely MS nurse that I felt I was up against an egg-timer and  my time was running out. Could I see The Teenager through his horrible Nirvana stage and get him into uni? Would he ever get his hair cut? Would I complete my Masters? Without my beloved Amantadine, which combated my fatigue, I felt as if I was back to square one. Like an evil Monopoly game. Do Not Pass Go. Go Straight To Jail.

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Nov 20 2014
8 Comments
Symptoms and Treatment

In The Wee Small Hours

insomniaMS is a pain.

It nudges me awake at night then makes me sleep through the day.

I have a good few days off work and the bliss of sleeping in the afternoon cannot be understated.

For example, today, I made myself a lovely tuna sandwich complete with mashed capers. Perfect. Thought I’d nod off for a little while before The Essay. I woke up THREE hours later, just in time to gather myself to welcome The Teenager back home from school.

But. In the ye olden days, i.e. before MS, I used to sleep like a log. Straight through. Now, I wake at 2am, 3am, etc. Anything can wake me – a cramp, a weird hand fixed into something gruesome (ewwww) or the cat lying on my face. It has been known.

In short, sleep has become the bane of my life. I hate it and I love it. To me, it is a complete waste of valuable time. To MS, it is a necessity. So I gather my blankie around me and do my time.

I try to fight it but I always lose. Sleep is a drug when you have MS and now I can’t take Amantadine (sniff) any more, sleep is more important than ever.

I did manage to make it to my lecture last night and stayed awake. But I scratched a lot. Is that an MS symptom?

Anyway, sleep, or lack of is becoming far too much of a problem. I will not and can not, sleep my life away.

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Aug 27 2014
18 Comments
Symptoms and Treatment

My Double Life

sleepyI live in two very real worlds, and it’s becoming increasingly harder to tell which is which.

I started taking Amantadine a few months ago in a final, desperate attempt to combat crippling fatigue.

You know the type; not the ‘ooh, d’you know, I quite fancy a ten-minute shut-eye’, but the ‘must. lie. down. now. or. else. the. cat. gets. it.’

After a few weeks of, ‘hmmm, is it working or is it me hoping it’s working?’, blam. I was quite suddenly…awake. Which was novel and lovely. I sailed right past the witching hour of 11am, sped past the goblin hour of 1pm and sauntered in a desultory fashion through the demonic hour of 4pm. I was owning this tiredness malarky.

Until, one weird morning. I woke, upset after having had an argument with a good friend the previous evening. Keen to build bridges, I called them;

‘Hey, s’me! Soooo sorry about yesterday! I honestly do like what you’ve done with the bathroom, really I do.’

‘Huh?’

‘You know, what we were talking about? When I laughed at your tiles? Didn’t mean to, honestly,  chocolate brown with green lotus-thingies is gorgeous. Let me make it up to you.Brunch?’

‘Huh? And what’s wrong with the tiles? You on something?’

Oh.

Turns out, I didn’t speak to them the evening before at all. I dreamt the whole thing. Not just in Technicolour, but with Panavision, 3-D, total recall Dream-Vision. I could swear it happened. But it didn’t.

I forumed it. Ah. Two strange side effects of Amantadine – lack of appetite (not strange, added bonus, surely?) and vivid, disturbing dreams/nightmares.

Since then, I’ve been ummming and ahhhing. It’s incredible to be wide awake. However, I do now struggle to get up in the morning, not a problem I’ve ever had before. I feel drugged. Which I guess I am. I’m weighing up the pros and cons and am still not sure which way to go. I’ve heard from a lot of people who’ve been driven to abandon the medicine due to the nightmares/parallel universe reality.

I’m going to give it a few more months. Last night, I had a wonderful conversation with The Teenager. We put the world to rights and before he left the room (after a great big bear-hug), he put out the rubbish bags, promised to tidy the bathroom and fed the cat. Yeah, I know. As if?

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Jun 29 2014
10 Comments
Symptoms and Treatment

Eyes Wide Open

Eyes wide openI have developed an annoying symptom recently.

Some evenings, when I’m reading a book or watching an exciting TV programme (Hannibal, Pretty Wicked Moms), I go from wide awake to instantly zonked.

No reprieve. It starts right out of the blue; my eyes start rolling and I’m pinned to the sofa, completely aware of what’s coming next – total oblivion. In that slim interim, I know I should get up and walk around, problem is I just can’t.

It’s suddenness is frightening. Apart from that, The Teenager sneaks downstairs and slurps down countless yoghurts while I’m in the Land of Nod. He probably also clones my credit card to buy online games, who knows?

Anyway, I had my review with the neurologist (a very nice man – *waves*) just over a week ago. When he asked me if I had anything I was concerned about, I launched into the saga of my numb big toe, my odd left foot, my odd right foot and this most peculiar Insta-Sleep (just add yawns).

He prescribed me Amantadine, warning me to take them no later than 2pm, otherwise I would be up all night – I wish. Yes, I was sorely tempted. But, I took them as instructed and nothing happened for almost a week. Then, blam, I was……awake. Fully. The grass was green and the bluebirds were singing. My life was suddenly in blinding Technicolor.

I worry though that the tablets mask the underlying symptoms. Am I pushing myself too far? Will I reach a point of collapse? Will this new-found energy enable me to exercise more? Bearing in mind that last Monday, the few squats I attempted with my lovely trainer led to four days of agony. I’m not joking. I walked up and downstairs at home like a crab, meh.

Also, the tablets have given me the most amazing dreams, so vivid that when I wake up in the morning I have to remind myself what is real and what is imaginary. I have the most marvelous conversations with friends and family, but I find out to my dismay that they are entirely one-sided.

I will keep trying with the tablets. I made the mistake of telling my boss. He offered to trade me two packets of Jaffa Cakes for a tablet. I wasn’t tempted. Much.

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