Category Archives: Symptoms and Treatment

Nov 08 2015
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Symptoms and Treatment

Silent But Deadly

sometimes you just have to pick yourself up and carry onMy MS is fairly silent. (ish)

To everyone else, just not to me.

It screams and yells in my face but is deftly hidden within my body, keeping its deviant symptoms tucked safely away, all the while wreaking havoc.

To other people, I could be a malingerer, a fantasist. A bore.

The biggest problem is in the detail; the description – try explaining in plain English what it feels like when an MS lesion hits the speech part of your brain and you can’t string a simple sentence together?

Or when your hands decide to go on strike; it’s no fun pouring a kettle of hot water over your hands instead of the coffee cup.

Then there’s the biggies – fatigue, balance, foot drop, brain fog. All perhaps innocuous to others but they add up to a walking, talking disaster area for me. Put them all in the MS Blender at once and I am a joke.

It’s why I shy away from actual real-life shopping. Too  much choice for my brain, likelihood of dropping stuff, tripping over shiny floor tiles, looking drunk, fumbling with change at the check-out. Gah. I am the person my mother warned me about.

What about the nerve pain? The constant jangling, buzzing, painful sensations, as if I’m trapped in some ghastly game of Operation, unable to fish out the funny bone. Over and over again.

MS fatigue divides my day in half – great first thing in the morning, useless when the sun goes down. Foot drop follows me wherever I go and I’ve made friends with my local cobbler – as I hand over yet another pair of flat shoes/boots to be re-soled. And as for brain fog – it’s a plague. As I’m sure I mentioned earlier. And maybe before that?

It all adds up to a pretty depressing picture. And it is.

Or could be.

I’m adapting, however slowly. I’m getting used to the curved-swerve-followed-by-the ‘whoops‘. I write endless notes to myself, to jog my battered memory. I hold the bannister when I walk downstairs and I threw out the dodgy shoes long ago. When I trip, I now do it with grace.

As MS takes a new and unexpected turn, so will I, and force it to do things it’s never had to do before, such as our current Master’s module in ‘New and Experimental Writing’.

That’ll teach it.

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Oct 31 2015
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Symptoms and Treatment

Identity Theft

thiefMS is a dirty, rotten scoundrel.

A thief.

As soon as you surrender your details – your symptoms, your weird feelings, your wonky emotions – MS snatches it all and steals your identity in return. You are now a victim of MS Identity Fraud.

The person you thought you were – independent, strong, single-minded – gone – and it’s up to you to work out how to put the falling pieces of your life back together, just when you’re at your most vulnerable.

If allowed free reign, MS will take your future; you know, the one you had all mapped out. It might take your partner, your job, your security, and of course, your health. Sadly, I speak from experience.

I’d like to think I’m trucking along just fine after those awful Two Years of MS Oblivion, but sometimes, just sometimes, MS still has the ability to knock me sideways. Like yesterday.

I was on the sofa, natch, when all of a sudden my arms and hands started trembling. I wasn’t too worried to start with as I get numb hands on a regular basis and thought MS was just shaking things up a little, quite literally. Then I stood up.

My whole body was trembling and I couldn’t stop it. My head was jerking, I could feel my chest moving and my legs soon followed suit. Tremors, all over the place.

I pushed down the panic and started to make dinner. I stabbed myself in the hand trying to dissect some lettuce then dropped a plate on the floor. I sat down on the sofa again, panicking a lot more now.

I did the first thing I could think of, call my mum.

‘Muuuuuuum, something really scary is going on and it’s got nothing to do with The Teenager.’

‘Oh dear, has that cat of yours brought in another dead bird? You ok?’

I explained the whole story, this new symptom. She told me my dad sometimes had symptoms like that and I was to try my best to stay calm. Deep breaths. Did I want her to come down?

I just wanted to crawl in to bed and block out the world, but it was only 5pm.

‘Muuuuuum, I keep stabbing myself with the kitchen knife.’

‘Ah. Probably a good idea to put that down for now. How about some cheese on toast?’

We talked a bit more and I felt better, but in the back of my mind I was thinking, pah, for all my positive thinking and getting on with life, MS still holds all the cards.

Around half an hour later, as quickly as they had arrived, the tremors stopped. My panic hasn’t.

What if it happens again?

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Oct 28 2015
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Symptoms and Treatment

Mind The Gap

get well soonSeven weeks post-third course of Campath (Alemtuzumab) and things were looking up.

If you discounted the cold sores, the bonkers fatigue and the two-week long head cold I just couldn’t shift, things were absolutely fine.

I’m back in work (although naturally The Boss would disagree), and I’m back in Uni for my second year of the Master’s.

Mind you, I’m still wrestling with the experimental writing module – my mind whirls off into weird and wonderful stories ( … this is a dot. A lovely dot. A dot that wanted to be a comma, blah blah) rather than concentrating on Virginia Woolf and her pals.

Then disaster struck.

First, The Boss was fiddling with his ladders on the roof of his van last week, slipped on some rain and fell over, breaking his right arm pretty spectacularly. Cue a plaster cast, a very, very sad face and the realisation that, as a building company, we had to come up with a plan and fast.

Second, just as I was holding a drainage pipe in place, I was whacked over the head by the most overwhelming MS super-charged cricket bat that I felt physically sick. I staggered to a pile of insulation sheets and collapsed in a heap.

I panicked. It couldn’t be a relapse but my speech was wonky, my balance was shot and my head was floating somewhere around in the stratosphere.

I left work early, holding back the vertigo and nausea and somehow got home, wondering how best to prepare for the Uni lecture that evening. Answer: not much. Just getting there would be an achievement.

The minute I got out the shower and had wrapped my dressing gown around myself, The Teenager pounced, holding out his laptop;

‘Mum, mum, mum, mum. Have you heard of The Ramones? Have you? Like, listen to this.’

‘Oh, very nice. Lovely dear.’

‘Yeah, great, innit? And this, there’s a weird guy dancing, look.’

‘Oh right. Yes, that is a bit, um, odd.’

‘Hang on, listen to this song, really funny and can I have some money for the cinema and can you drop me off a bit later? I drank all the milk, sorry.’

I have no idea what’s going on.

But I do know one thing – The Teenager wants a ‘Ramones’ t-shirt for Christmas.

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Oct 20 2015
10 Comments
Symptoms and Treatment

Brain Fog? Pass The Champers …

ChampagneAccording to a newspaper report last week, now that I am Middle Aged/8 Years Away From a Saga Cruise, I am prone to brain fog.

No, really?

MS got there before – my brain is well and truly fogged up.

But help is at hand – a practical list of things I can do to slow down ‘the inevitable decline‘. I chortled and read on, forgetting I had a casserole in the oven (it was fine after I scraped off the top layer and threw out the burnt pot).

If I want to hang on to the rest of my brain cells, I should consider:

Turning off my phone – apparently Twitter gives me a hit of dopamine, just like a gambler in Vegas. And the problem is ..?

Switching off the TV – watching it increases my risk of brain fog by 20%. Reading, on the other hand, reduces it by 5%. What if I put the telly on silent and read the subtitles instead? Clever, eh?

Drink a glass of champagne – enough said. A most excellent idea, no studies needed.

Spice it up – add turmeric to just about everything, as it’s been dubbed ‘Miracle Gro’ for the brain’. I should add it to tea, salads, curries, casseroles (when I buy a new pot), shampoo, the air-con in my car. The list is endless.

Change your thinking – I must aim to do something new every day; something that gives me pleasure, power, pride, passion, and every other word beginning with ‘p’. I am currently Productively Pondering Possibilities.

Enjoy coffee – hooray! Ah. Without milk. Hmm. I drank black coffee for over 20 years in a vain hope of appearing semi-intellectual and interesting. It didn’t work (neither did the beret or prescription-less glasses) so I started adding milk when I hit 37.

Go to bed by 11pm – at this point, I gave up. 11pm. 11pm? The last time I was awake at 11pm, I was woken by the pesky cat yowling at my bedroom window with a recently-deceased mouse at her side. My idea of cognitive improvement is remembering to put the electric blanket on by 8pm.

Perhaps I have to face facts. MS has mushed up my brain. At times it’s funny – there’s a whole host of anecdotes about my inability to remember conversations, diary dates, shopping lists. Sometimes though, it’s a little sad.

Time to crack open the bubbly?

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Oct 12 2015
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Symptoms and Treatment

Nerve-Jangling

nervesEvery late-afternoon, just as the sun begins to set, I have an overwhelming urge to take off all my clothes.

Sadly, this has nothing to do with a new-found interest in naturism or a desire to embrace my post-40 body, flabby bits and all.

I don’t find myself in front of the mirror chanting positive affirmations while gazing deep inside my soul.

It’s much more pedestrian than that – it’s an MS symptom. Mind you, that sounds quite weird so I’ll explain.

For the last two weeks I’ve had the most hideous nerve pain. I’m well-used to this in my legs, my feet and those occasions where it comes and goes in my arms and hands. It’s my constant nemesis. But this time the pain has been cranked up to the level where it hurts to have clothing next to my skin, a bit like a case of very bad sunburn.

Not only that, any kind of pressure is torture, so I spend my evenings alternating between sitting bolt upright on the sofa or wandering around the house like a lost soul, tripping over the cat.

Every morning when the nerve levels are manageable once more I think, ‘gah, must have been imagining it, tsk, silly me’. I get through the day, catch up on university reading (still struggling, still bewildered), attempt to pin-down The Teenager for more than three minutes to find out what he’s been up to (apparently we live in the same house, though you wouldn’t think it).

And just as I begin to relax, start to slough off the challenges of the day, blam, there it is. As if every single nerve ending is a burning needle. I’ve tried billowy t-shirts and baggy sweat-pants, I’ve tried a kaftan (yup, and luckily The Teenager was out that night). I’ve tried slathering myself in moisturiser as some kind of barrier cream but ended up sticking to my clothes.

I’m hoping it’ll pass and doesn’t become a permanent feature of my life. I know I quite fancied myself as a tortured writer, starving in my garret, but this isn’t quite the way I had planned it.

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