Category Archives: Symptoms and Treatment

Eyes Wide Open

googlyNow, this is strange.

Since MS, I’m quite used to falling asleep at the drop of a hat, dozing off mid-conversation and eyeing up anything remotely comfortable – in any location – as a possible bed.

If I’m in a home-furnishings shop I’ll prod and pummel cushions, checking for sleep-ability. Too small, too hard, too soft. Too … not right.

But until now, I’ve never fallen asleep sitting up.

It’s a recent development and quite bizarre. The first time it happened, I was flicking through How to Write a Killer Novel in Ten Days, studiously highlighting important points (I may as well have highlighted the entire book).

Suddenly, my eyes went ‘all googly’ (technical term). They rolled around my head. I fought back, urging myself to wake up. The googly eyes continued and I dozed off, but was still able to hear everything around me. Very odd and ever so slightly terrifying.

I knew I was aware of my surroundings as I could hear The Teenager thundering down the stairs and snapping his fingers in front of my face, yelling, ‘Aaaaaand, you’re back in the room. Can I have some toast?’

It was exactly like being hypnotised, but being hypnotised for no good reason, such as creating an aversion to crisps or having an inexplicable hatred of Kinder chocolate.

The second time it happened was last night. I was watching a very interesting programme on catch-up and was just getting to the good-bit, the unveiling of the villain, when, blam, googly-eyes started up again. I shook my head, snapped it back. To no avail. Boom, I was out for the count.

I was only revived when The Teenager shook my shoulder and told me it was past my bedtime and there was no milk in the house. Unfortunately, the side-effect of googly-eyes is a complete inability to walk in a straight line, such is the strength of the induced sleep. So I staggered around the kitchen and living room, turning off lights, replenishing the cat’s crunchy food bowl, filling the kettle, then weaved my way to bed, bidding goodnight to The Teenager and his seventeen school friends who were playing online with him.

I lay in bed, pondering this new symptom. I told myself to stay calm. It could pass. It may not. So, I can sleep anywhere if I lie down and now if I sit up.

What happens if I can sleep standing up?

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Ya Flu Sucks …

fluLast Tuesday in work, the boss stared at me in a somewhat odd manner.

‘Oi, Half-Shift, you here or what?’

‘Oh, er. Yes, that colour scheme looks great. White looks fab with, um, everything don’t you think?’

‘Nice, but we’re talking about the roof plans?’

I tuned back in from wherever I was. I felt … wrong.

I left work early with, ‘ta-ra Quarter-Shift’ ringing in my white-noise ears.

At home, I collapsed onto the sofa (a recurring theme) and lay there, dazed (another recurring theme).

Strangely though, I didn’t feel like eating any chocolate. It was probably then that I knew something fairly serious was up.

That night, I crawled into bed and spent hours tossing and turning, covered in sweat and having the strangest dreams. I woke up long enough to cancel two appointments and went back to bed.

When I woke again, I couldn’t get out of bed. I tried. Then tried again. Eventually, I tumbled downstairs and collapsed again on to the sofa. I was feverish and aching.

Hours later, I dressed in yesterday’s clothes and dragged myself off to a chemist. He noted my long list of symptoms and finally told me I was one of the unlucky, ‘Had the flu jab, got the flu’ peeps.

I questioned him closely:

‘And that would explain the aching joints? The insomnia? The nausea? The headaches?’

‘Yes.’

‘And also the feverish dreams?’

‘Yes.’

‘What about the complete lack of appetite? And do you think this might be a lasting symptom (ever hopeful)?’

‘Yes. And, ah, no.’

Right. Panic stations.

I haven’t felt this ill in a long, long time. I can always somehow truck on, but this, this was on a different level. I was reduced to a gibbering wreck. No longer could I hide these symptoms from The Teenager when he found me on the sofa staring at ‘Judge Rinder’ with glassy eyes.

‘Hi! I don’t seem to be able to get up off the sofa. Not MS, just the flu. Nothing to worry about.’

The Teenager patted me on my head.

‘Mum. You know, you’ve always been kinda brave by keeping your MS symptoms away from me. I know that. I’m not like, stupid. But, like, let me help.’

It was hard, but I did. He cleared away glasses and cups, put out the rubbish, tidied up the kitchen and got me juice. He fetched my unread book-club book from upstairs, fed the cat, closed the curtains.

The next two days were a blur of willing myself to get better. Flu seems to exacerbate all manner of MS symptoms, so along with the aching and feeling of being run over, I was coping with more foot drop, bonkers balance and an interesting speech slur.

And now, five days on, I’m getting slowly back to normality. Or something like it.

One thing’s for sure. This has been a terrible year so far – surely I’m due some good news?

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System Shutdown – Prepare to Standby …

shutdownYou just know, don’t you?

As soon as you wake in the morning, get up and fall smack into the nearest wall, you just know.

MS is not only content with corrupting your system, it’s staging a total takeover bid.

I had one of those days yesterday.

Usually, I can keep stuff under wraps, get on with life despite the inner physical and mental turmoil that MS brings. Not so on one of those days.

My vision was blurred, I was exhausted and I felt utterly, totally crushed. I could feel my brain shutting down to Basic Mode.

Inside, I was horrified. Worst case scenarios were filtering into what was left of my brain. My main aim was to get through the day and still appear relatively normal to The Teenager; so long as I could nod and smile in the appropriate places, hand out some money and put a wash on, I was covering all bases.

The Teenager had other ideas: he fancied a heart-to-heart about the football relegation zone, who was headlining the Reading Festival next year (gah) and the merits of various protein shakes. I nodded and smiled in the appropriate places. I think.

I fell asleep on the sofa at 10am and woke up three hours later to find a glass of squash with a post-it note from The Teenager attached, reading, ‘Good Morning! (smiley face)’.

Later on we had the Loose Jeans Drama. He was going out for a sixth form party. He got dressed (over several hours). Finally, he came flopping down the stairs, arms swinging loosely, an angry look on his face.

‘Look, just, like, look.’

‘Oh. Very nice dear. You look lovely.’

‘No. I don’t. Look. I can’t go. Looks stooopid.’

Pause. His hair? His shirt? Not enough Lynx? Too much? I had to be very, very tactful.

‘Er, you look, well, so handsome.’

‘Yeah, right, mums always say that, like, d’ur. Noooooo. My jeans.’

An hour-long drama cut short, he has lost a lot of weight at the gym. His jeans are loose. Very loose.

‘Well, it just shows off how much weight you’ve lost? Hmm? No?’

‘Ahhhhhh. You just don’t understand. Can I have a tenner?’

He left in a whirl of Facebook updates and texts, cursing his jeans. I collapsed. I have no idea how I survived the day. A day spent doing nothing except lying on the sofa, unable to concentrate, frightened and hoping that tomorrow would be different. It was an MS blip. We all have them?

I lay virtually unmoving until 9pm and crawled into bed. I slept for nine hours straight, woke up, didn’t trip into the wall and life looked a little, only a little, brighter. For now.

As for The Teenager, he had a great time at the party, even with loose jeans.

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Give and Take

backflipIf I could do backflips and turn cartwheels, I would.

For the first time in over four years, I have zero nerve pain in my legs. It’s nothing short of a miracle.

Yesterday, after consultation with my MS nurse and GP, I doubled my dose of Pregabalin. Within hours my legs felt, well, normal. I prodded them, stood up, sat down, walked across the room.

Ah. Of course. As with anything MS-related, it gives with one hand and takes with the other. Sure, I could feel my legs, but my balance was shot. I staggered around the kitchen, unaware The Teenager had snuck up behind me for a fridge-rummage.

‘Wha’s up with you, muv?’

‘S’alrigh’. Meds. Strange.’

‘You’re talking funny.’

‘Yar.’

‘Can I have a tenner for the cinema tomorrow?’

‘Erm, yesh.’

I was slurring my words. My head was spinning and I felt drugged. The Teenager found the last yoghurt I’d been hiding behind the jam and wandered off, tutting.

I flopped onto the sofa, polished off the chocolate Buttons and tried to think. Pregabalin is also prescribed for Generalised Anxiety Disorder as well as neuropathic pain, so I guess that’s where the drugged, cotton-wool-brain feeling came from. It can also affect balance and speech. Excellent.

I weighed up the pros and cons. The nerve pain is manageable during the day, excruciating at night. I’ve spent hours whimpering on the sofa in agony, unable to concentrate on anything. Whole evenings have been wasted. Could I swap this for a spaced-out feeling? Would I trip more than usual?

I’m going to give it a go.

The pain in my legs has defined my life too much and is a constant MS-memento. Unfortunately I still have the numbness in my feet, so the foot-drop is here to stay and sometimes I can’t feel my feet at all, although the pavements are there to remind me as I trip over yet again.

So for now, I will ricochet around the house, falling over the rugs and the cat, but I won’t mind so much as my head will be floating around somewhere else. I haven’t been outside yet – I’m about to get ready to take The Teenager to town for lunch.

Should be interesting?

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A Grave Decision

yayIf you choose to have Alemtuzumab treatment as I did, you’ve got a one in three chance of developing Grave’s disease, a thyroid disorder.

I got the illness and yet another insert in my medical file.

It’s fine – when I was rapidly losing weight and feeling like I could take on the world with the excess energy I had, it was sublime.

The severe cartoon-like heart palpitations were another matter however, and were sadly followed with beta-blockers to bring me back to earth with a thud.

Since then, I’ve been on varying doses of thyroid meds to calibrate me back to normal. Up a little, down a little.

I had a consultation with an empathic and lovely endocrinologist today who fortunately has a great insight into Alemtuzumab-induced Grave’s Disease.

I’m to stay on the meds for another six months, but the likelihood is I will have to choose between losing my thyroid or becoming radioactive (for a week).

Hmm. I googled, and wish I hadn’t. One post started, ‘so, you’ve elected to have your throat cut – are you aware of the risks?’

I met The Boss for Emergency Talks tonight (long, sorry work saga) and explained my dilemma.

I took a sip of wine and said, ‘and I’ve looked in to it, you know, if I get the thyroid taken out, I could, like, lose my ability to … shout.’

‘Can you go private? I’ll pay.’

Charming.

I asked him how he was, what with his broken arm, dodgy knee and headaches.

That obviously reminded him and I waited as he popped out a few pills from their blister packs.

‘Well ..’

‘Yes?’

‘You know my dodgy knee?’

‘How can I forget, Boss?’

‘Erm, well, the doctor thinks its, well, um …’

What?’

‘Gout’.

Ah.

‘Isn’t that what older people get?’

If looks could kill …

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