Category Archives: Symptoms and Treatment

Nov 18 2014
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Symptoms and Treatment

Please Excuse My Brain, It Doesn’t Know What It’s Doing

memoryI was formally introduced to my brain after my very first MRI.

There it was, in all it’s lesioned glory, glowing brightly on the computer screen. I was entranced and tried to take in what the neurologist was telling me as he counted up the little blobs of white amidst the grey.

I used to like my brain and we got on quite well; it saw me through lots of adventures, exams and crises. And Trivial Pursuits. It could always be relied upon to make snap(ish)  decisions or mull over a myriad of options for any given situation.

Lamentably, it has decided to strike out on its own, making a bid for devolution and taking a lot of important bits with it. Now my short-term memory is atrocious. I repeat myself. I also talk about the old days, but that’s probably an age thing. I repeat myself.

I frequently apologise on behalf of my brain and it can become quite awkward. Say I’m standing in front of a huge cafe menu, chalk-boarded behind the increasingly-impatient barista. I am blank. I literally cannot think what to order. Likewise menus in restaurants, shampoos and conditioners in Boots, colours on paint charts and which wrapping paper to buy for Christmas (someone told me it was soon).

I forget the most basic facts so chatting with me can be a journey into charades. I can’t remember names, conversations or dates. I point to stuff, use my hands to describe things and say ‘aggggghhhhh, you know, that, that, um, thing with the spouty bit?’ ‘Oh, yeah, thanks, kettle.’

However, let’s look at the upsides. For one, I no longer brood on things. Drawn-out arguments are a thing of the past. I could have one on the Monday and bounce into work like Tigger on the Tuesday, all forgotten, unless I’ve blogged about it. Then I brood, meh.

But having a short-term memory means I re-experience wondrous things again and again. It’s almost as if every day is new. I get up in the morning and think, ‘wow, what a lovely day! Oh, great, I can have coffee! Wow! And the cat, isn’t she just gorgeous?’ Until, thwack, I veer into the bannister and it all comes rushing back.

That aside, I will continue to count my blessings. I equate it with a computer and how refreshing it can be to delete and send to the trash bin all that junk that’s been hanging around, and that’s got to be a good thing?

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Nov 13 2014
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Symptoms and Treatment

Softening The Blow

BountyI vividly remember trying to rummage through my newly-delivered Bounty Bag minutes before my newly-delivered son tried his best (again) to wake up every other baby on the maternity ward.

The nurse told me he was the noisiest baby they’d seen in a long while and I hoped she was joking.

Anyway, the Bounty Bag. A corporate free-for-all where baby-related companies give you a whole stack of freebies and booklets in order to entice you into swearing allegiance to them for evermore. Some people sneer at them, but for me, living in London without close relatives nearby or friends who weren’t falling out of nightclubs, the Bag had magical properties. Someone, somewhere had been through it before and thought I might just like a few tips.

Ethics to one side (nice try, flogging goods to women who had just been through the hell that is childbirth), wouldn’t it be great if newly-diagnosed peeps were handed a bag stuffed full of information and a few goodies to see us on our way?

From what I’ve heard, a lot of us are in the dark at diagnosis. We’ve probably googled ourselves silly, gorged on doom and gloom websites and come out the other side crying into our cornflakes.

So, here’s what I would have included in mine:

  • Lots and lots of booklets from those lovely people at the MS Society and the MS Trust – sanity in the wilderness.
  • A voucher for a months supply of Waitrose ready-meals. And of course, Dominos for The Teenager.
  • Some posh pillar candles (red-rimmed eyes magically disappear in candlelight).
  • A good few bars of Swiss chocolate. And maybe some jellybeans.
  • A large box of very soft tissues.
  • An expensive throw for the sofa.

Disclaimer: MS is individual to everyone so it makes sense to offer bespoke bags….

What would you have in yours?

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Nov 03 2014
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Symptoms and Treatment

MS Is Still Crap

evil laughI’ve spoken with a few people recently who have asked, ‘are you really so chilled about MS now?’

‘What’s happened to all the dark posts you used to write? And if you’re on something, can I have a bit?’

Hmm. Tricky. I sometimes feel that if I let the dark stuff back in, I will never leave the house. In a lot of ways my life is more fulfilling now than before. I’m far stronger (in mind, not body), I’m doing something I love with my Masters course and I am probably a kinder, more tolerant person.

However, there is definitely something in what they say. I admit, I still wake up in the wee small hours, gripped by a terrifying fear of the future. Every time I trip or stumble over my words, I am reminded that my life now will always be defined by these details. Heck, I even have plastic wineglasses.

I’ve had an angsty time at Uni, punctuated with inelegant falls and a very real dread at failing. My brain just doesn’t work the way it used to. Searching for the right word is charming in a French-language film, where the beautiful young woman pauses between cigarette puffs, but utterly soul-destroying when I struggle to find the word ‘paragraph’ at a tutorial at the age of 41 with wrinkles and an undying love of bacon butties.

So, yes, MS is still crap, in all it’s devious glory. It invades every area of my life. Currently, it’s shoving me around. Next week, perhaps the nerve pain will crank up, who knows? This afternoon I was supposed to finish my essay (deadline 5pm Wednesday). Instead, I fell asleep, in the middle of watching a very interesting discussion about which colours to wear this Winter.

My newest medical annoyance is trigger finger. Funnily enough, I noticed it in the wee small hours as I was lying in my bed pretending to be asleep in case the cat bounced on my face, yelling for an early breakfast. I flexed my hands and two fingers stayed the same, crooked and weird. I did the same thing and they stayed the same. Strange, and a little bit worrying.

So of course, I got up and googled MS and trigger finger after feeding the cat. There may be a link between the two. Or there may not be.

MS is crap and it always will be. The only thing that will change is my attitude towards it. And, the upside is, when I woke The Teenager and showed him my dodgy trigger fingers, he was actually rather impressed in a ‘ewwwwww’ kind of way. It doesn’t take much.

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Nov 02 2014
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Symptoms and Treatment

Trippin’

no stumblingYup, I’m tripping, full on tripping.

Not the cheeky little stumbles outside a shop or the blasted foot drop by the car when I grab the handle and…..fall to the ground.

Nope. This is the time I really should wear my, ‘I’m Not Drunk, I Have MS’ t-shirt.

I’m tripping all over the place, and it’s embarrassing. I crashed into a wall (a wall) at the end of a lecture last week. Fail. I fell over in the newsagent’s, ‘blimey, these weekend papers get heavier every weekend, huh??’ Fail.

I took Halloween goodies to the nephews and tripped over a stray pebble. Meh. It’s getting less and less funny, if it ever was.

Why can’t I have an illness where I look completely normal? If there is such a thing.

I seem to have this weird, stompy walk, a bit like the models in Paris do on the catwalk, one foot overlapping the other. Difference is, they keep on going. And turn. With me, I overlap once and whayhey, I’m gone. Like Naomi Campbell without the, um, model looks.

It’s all the more desperate for me as I used to walk in heels. I know, me! High heels. I can’t speak of inches without wincing. Italian, finely crafted leather. Bee-Yoo-Tiful. Believe it or not, it has been remarked that I (used to) not only walk, I saaaaashay(ed). No longer. I wear flat boots for daytime and flat boots in the evening. In short, meh, frumpy.

I am often found staring at women in heels, with a longing bordering on the weird. D’ya see? Did Ya? Her??? In those – solemn, light a candle- heels? No?

Those days have long gone and as I take out my delicately-embroidered handkerchief in black, I regret. All those days I thought I looked absurd, ridiculous in high heeled boots, opaque tights and denim shorts, striding across that bridge in Austria.

If I could do it all again, I would.

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Oct 23 2014
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Symptoms and Treatment

Goodbye, Dear Meds

AmantadineGoodbye, Amantadine.

Goodbye to the zipping energy you once gave me. I will miss you.

Goodbye to all that. My house will lapse into slovenly-ness again. I will become a stranger to my pink duster, my Febreze and my Vanish stain-remover.

This thyroid medicine is crossing over with it, making me sleep in every morning then rendering me Bonkers-Stupid with energy five minutes later.

I am on a crazy rollercoaster in the twilight world between medicines. I don’t watch telly any more; the unfolding drama behind my eyes more than makes up for it.

As the new meds could suppress my immune system, I have made up some lies rules for The Teenager:

* You must take your shoes off (including rugby boots) at the door, rather than leaving them on the stairs so I can trip over them.
* Pizza is dangerous.
* You have to wash your hands immediately upon entering the house.
* Pizza could carry nasty bits.
* We shouldn’t share towels, so stop nicking mine.
* Pizza is lethal and Dominoes has gone bust.

So, on the one hand, I have a bizarre amount of energy, until the thyroid meds do their bit, but on the other, I am withdrawing from Amantadine, which used to lift me up into stratospheric delights. I am up, then down.

Like yesterday. I had a lecture that evening and was on a medicine-induced high all day, until I sat down and took out my notes. Which had mysteriously disappeared. I was jolted from my torpor by the tutor calling my name and I mumbled an incoherent reply. I jotted down some squiggles and tried to look present and correct, which was pretty difficult, as I leaned over every time he looked away from me, inching ever closer towards the floor.

I was supposed to be back at work today, but woke three minutes before the boss was due to pick me up. I called him in a panic. ‘muh, s’wake, s’am’. He told me he had got me a coffee and would drop it in before driving TO WORK. He did so with a dramatic sigh, handing it to me with a tut and I’m sure I heard him mumble ‘easy life’ under his breath.

Things will return to normal. I will yawn before midday. I will eat bacon butties again.

In the medical meantime, I will zip around, eyes staring and parents will shuffle their children away from me…. luckily it’s Hallowe’en soon.

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