Category Archives: Symptoms and Treatment

Aug 02 2015
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Symptoms and Treatment

Here We Go Again …

RelapseYou know how it starts, that ‘whoops, where’d my brain go?’ sensation.

That out-of-the-world feeling, the disconnection, along with the overwhelming fatigue, stumbling, mangled words, etc.

It must be Relapse Time.

MS has flicked through it’s malicious diary, thought, ‘hmm, let’s see, last one was in …. oh yes, February. I’m thinking August sounds about right. Bring it on and let the games begin’.

It started three days ago and I’m struggling to get the bare minimum done. And by bare minimum, I mean barely getting by with the minimum. The washing basket is overflowing, the paperwork is mounting up and I’m re-reading the same page of my novel over and over again. Some bright spark chose ‘A Suitable Boy’ by Vikram Seth for our next book club. 1500 pages. I may have to Wiki it.

On the other hand, The Teenager is having a fabulous time shouting out, ‘watch the wall!’, ‘d’oh, there goes another plate’ and ‘nah, don’t understand what you’re saying, soz, that’s not even a word, muvver.’

Luckily at work on Friday, there were loads of people on site, so I was able to sit in a corner pretending to look at complex building plans. Whenever anyone walked past, I whipped out a pencil and appeared to be calculating steel beams and floor boards. I got away with it. Back home, I stumbled to my sofa, collapsed and lay there for three hours.

I physically couldn’t get up. I wanted to, I needed to get stuff done, make dinner, appear normal, be a mum. I simply couldn’t. The Teenager came downstairs, modelling his newest t-shirt. I cocked an eye open, told him how lovely it was and apologised. What more could I do?

The next day, I woke up, yawned, went out for the essentials, yawned, came back home and went back to sleep. When I woke, I yawned and thought about going back to sleep. I stumbled to the kitchen, yawning, dropped a plate (this one bounced) then back to the sofa. And repeat.

The only ‘good’ (and I hesitate to use that word) thing about a relapse is that it concentrates the mind right down to the base level. If you can just drag yourself through the day, that’s an achievement. Nothing else matters. All the stress of the last few weeks means nothing when you’re gripping bannisters and falling over in the kitchen.

The aim is to get through this as quickly as possible, to yank my brain back from it’s wanderings. To rein in all the physical symptoms so that they’re more manageable. In short, to become me again.

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Jul 11 2015
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Symptoms and Treatment

Fat, And Then Some

thyroidThere’s short straws. Then there’s short, fat straws.

The Alemtuzumab treatment I had for MS gave me odds of 1 in 3 that I would develop Grave’s Disease, a thyroid problem.

I was the 1.

At first, it was wonderful, as my loopy thyroid helped me shed pounds effortlessly. I was buoyed up with an incredible amount of energy (the Holy Grail for any MSer) and I sighed with sheer bliss as yet another pair of jeans were consigned to the growing Fat Pile, tucked away at the bottom of my wardrobe.

Enter the endocrinologist who took one look at my thyroid levels and immediately put a stop to my fun, effectively reversing then decelerating my over-active thyroid into a sluggish, bored, tired under-active thyroid.

I cried when I stepped on the scales. I snivelled when I rummaged around my Fat Pile. Every single day I gained a pound. I banished carbs and chocolate (gah) from my diet. I sipped green tea and swirled cinnamon sticks in my natural yoghurt.

I have a fairly physical job, so hoped against hope that this would offset the rapid weight gain. Nope. My Duracell-Bunny hyperactivity had morphed into slow-mo.

At my last meeting with the size-six endocrinologist, I’m not afraid to say I begged. I pleaded and put my case forward: the meds I was taking were of course sorting out the thyroid, but were ruining my life on two levels:

  • Relentless weight gain. I am now a blob of my former self.
  • Extreme lethargy and fatigue. Commonly known as, well, common MS symptoms, so I was having a double-whammy.

She had no mercy and told me I might be on them for a year. A year. At my current rate of weight-gain, I will be dressing in tents with holes cut in them for my head and arms.

It’s getting harder to keep going at work, as weight gain plus fatigue means it takes me hours to recover after just half a day in work. Never before has my nickname, ‘Half-Shift’ been more appropriate. My body and mind shut down at a certain point and I slump onto a pile of bricks, head in hands.

On the plus-side (lol), I am yet again radically over-hauling my diet in a desperate bit to put a stop to the pounds piling on even more than they already are. I have dusted off my kettle-bell. It’s still a door-stop, but I live in hope.

For now, I am experimenting with black clothes and dramatic scarves. Perhaps I should start wearing my heavy, black-rimmed reading glasses again, to draw attention away from my triple-choc muffin top.

And I will have insane pleasure in saying, ‘oh the fat? It’s my thyroid. Honest.’

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Jun 06 2015
10 Comments
Symptoms and Treatment

So MS Isn’t Painful?

MS painThere’s a misconception that MS is somehow pain-free and more of an irritant than anything else.

You know, the stumbling, the dodgy memory, the heat intolerance, the fatigue. In the grand scheme of things, not a bad little illness to have, right?

Wrong.

Sure, we can ‘laugh’ at the stumbling walk, until we trip down the stairs or fall over the in the shower, still clutching our Herbal Essence. We can put up with the joshing about our forgetfulness and fondness for post-it notes. As for the fatigue, well that’s just downright cushy of course. But pain?

Well, over the last month or so I’ve been in a lot of pain. First up was the heat intolerance. People will tell you it’s perfectly simple – just stay out of the sun, pop a hat on and drink lots of water. Why didn’t I think of that? If it were that easy, I would stay in a shady corner until the Christmas goods start appearing in the supermarkets.

So, the heat made me wilt. It pulled the plug on my energy, which was bad enough, but it then began to bring up intense itching, which to my horror, turned into a grotesque rash of blisters. To cut a long story short, after steroids and jumbo-sized bottles of grotty cream, it’s under control but I’m now left with ugly scarring all over my arms. And they still itch at the merest hint of sun, even through clothing. The boss has moved on from nicknaming me Half Shift to Apocalypse Zombie.

So far so bad but worse was to come. I’ve always had neuropathic pain in my legs, feet and arms and my dose of Pregabilin has been steadily increased to cope with it but over the last two weeks it morphed into something truly evil.

Take yesterday. I had a good day at work, got home, sorted The Teenager out (he’s on exam study leave, aka, doss around in bed all day eating toast), and put out the rubbish. Then blam, a whoosh of extreme nerve pain. I lay on the sofa whimpering and it rendered me useless. I tried to lie still, but the pain kept coming in hideous waves, along with intermittent violent twitching in my legs.

Sleep seemed the only answer so I set my alarm and tried to doze off. Only to be awoken by The Teenager crashing downstairs looking for the vacuum cleaner (he’s quite unfamiliar with it). Of course, after being holed up in his room all day, he wants to clean it at 8pm. He bashed every skirting board with the vacuum, sang (badly) at the top of his voice and chatted shouted to his friends on the X-Box before rushing back downstairs to make some toast.

So the next person who tells me I’ve got off lightly with MS, please excuse me while I trip you up and poke you with a cattle prod.

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May 13 2015
6 Comments
Symptoms and Treatment

MS Is Having A Laugh

mobileI woke up this morning wondering why on earth my mobile phone was on my leg.

It buzzed on and off and as I drifted in and out of sleep, I pondered this new situation.

It kept ringing so I got up and discovered my phone in its usual place, on the bedside table, next to the pile of books I’ll never get round to reading.

Strange. The phone wasn’t ringing but my leg was buzzing.

Great.

A new MS quirk. My left leg now vibrates every five minutes.

I got on with my day, catching up with appointments, popping to the shops and slumping in front of the telly, leg still buzzing away. My foot drop also reappeared like a long-lost enemy, which means my favourite flat boots are now scuffed beyond all recognition.

I did what I normally do when a new MS symptom pops up – I got my favourite blankie and fell asleep on the sofa, hoping it would go away by the time I woke up.

It didn’t, so I guess it’s here to stay for a while. What should I do? I veered between self-pity and, well, more self-pity.

Then I stopped. How would that help? I tried to see the funny side. I had a meeting at university to see whether I could take a PhD (don’t laugh), and bored/scared my friends by asking them to put their hands on my leg to see what I was talking about. Phew. I wasn’t going mad, my leg really was vibrating.

Anyway, the upshot is, ok, a new MS symptom. It’s annoying and means my leg moves in a totally new way. I just have to deal with it. And, although it might sound weird, I have to see the funny side. As it is, my nerve pain means it feels like I have mobiles strapped to my feet. This has gone on for over three years. So I’ve just added a new one.

MS is having a laugh. And it’s all about having a laugh. What’s the alternative?

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May 04 2015
4 Comments
Symptoms and Treatment

Need-To-Know Basis

flumpMy short-term memory is playing havoc with my life.

I now seem to exist in a permanent state of wonder.

Wonder at why I am standing at the fridge, peering in at the contents. Wondering why I’m holding a bottle glass cleaner in one hand and an unopened sachet of cat food in the other.

The Teenager was diligently typing up study notes for his looming exams the other day:

‘Mum! Oi, mum. When you finally stop watching Mad Men, could you have a look at my notes?’

‘Of course my little cherub.’

Ten minutes later, I put the rubbish and recycling out, placed the to-be-returned library books in a prominent position and vacuumed up stray cat biscuits. Then sat back down and un-paused Jon Hamm.

‘Muuuuuuuuum. My notes, like, d’ur?’

Gah. I completely, utterly, totally forgot. It’s got to the point that if I’m planning to cook dinner, a seismic IQ challenge in itself (any recipe longer than four steps is consigned to the ‘yeah right’ pile), I have to constantly remind myself what I’m doing. Which can be a little bit tricky, especially living with a Teenager.

‘Mum. Muuum! Why are you saying ‘mince’ all the time? It’s, like, a bit weird.’

‘Must get mince out of fridge, must get mince out of fridge, must get … must, oh, um, what was I doing?’

The Teenager looks at me and sighs. As does the kitten, as I’m still holding her cat food in one hand.

Right now, I’m living on a need-to-know basis. Which I guess is a bit like mindfulness without the, well, mindful part. Every day is a brand new awakening, as I stumble downstairs, trip over the kitten and am confronted with reminders – notes, lists, information I completely forgot overnight.

My diary is my new best friend. Everything, and I mean everything, is logged. Not just the appointments, but the ‘buy milk’, ‘put washing on’, ‘order cat litter’.

I had a chat with my mum this morning about it. She completely agreed, it’s hard. Then she said, ‘mind you, I’m 64, hee hee. You’re only 41. 42 this August!’ Is it MS? Or is it ageing? I know it’s MS. Before, I prided myself on my memory, almost photographic. I was highly organised, everything at my fingertips.

It’s been a wake-up call, but in a way it’s a teeny bit liberating. Friends confide in me, safe in the knowledge I’ll forget what they said within a week. I live more in the moment. My brain is uncluttered with insignificant stuff.

I’m trying to see the upside in this. Can you imagine my delight when I opened a kitchen cupboard and found an unopened packet of popcorn I’d forgotten about, left over from book club? It makes it all worthwhile. Kind of.

Photograph of The Kitten, Brontë, a couple of months before we adopted her.

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