Category Archives: Symptoms and Treatment

Jun 29 2014
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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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Jun 18 2014
4 Comments
Symptoms and Treatment

Mirror, Mirror…

Mrs Blobby….on the wall, who’s the blobbiest of them all?

Well, me.

MS does the weirdest things to your mind and body. First and foremost, it had the utter cheek to launch an all-out attack on me (itself?).

Three years ago, my faithful body drew up the battle lines and hunkered down for a long-term offensive, offensive being the operative word. Bits of me started to go wonky, my mind melted into a goo-like mass and my once-trusted-with-my-life body morphed into a despised stranger. I no longer understood what it was doing, or why.

Then there was the terrifying diagnostic process, which in my case was somewhat helped along by a bountiful supply of comfort food. I didn’t care. What was an extra scoop of Mackie’s Indulgent Ice Cream between enemies? Or a special offer bag of M&M’s? Junk was a soothing balm to my battered soul.

And finally, the meds, the steroids. Mind you, one of the courses of steroids meant my Christmas tree was put up in record time a couple of years back. At 3am. And I polished all my lightbulbs and finally got round to painting anti-mould stuff on the bathroom ceiling. They might taste foul, but boy, the energy!

All this has culminated in me just not recognising myself. Who is this large, scowling person staring back at me from shop windows and inappropriately placed mirrors? (a note to all you zeitgeist-y restaurants and wine bars – mirrors may make your place look bigger, but it’s most off-putting when I’m trying to look super-elegant whilst sipping my Martini and carrying on a scintillating conversation, ta).

Anyway, I have reached Crunch(ie) point. I am out of that dark tunnel, blinking into the light of grudging acceptance of this foul illness. And I really don’t like what I see. I used to have cheekbones. I still do, with a bit of Sellotape, but I would like my real ones back please. They’re buried underneath that chubby face, somewhere. I would like to banish the bingo-wings. Tone those thighs. Walk tall again, rather than hunching over and scanning the pavements for tripping hazards.

To that end, yesterday, I met with my brand, shiny, new personal trainer. And I signed up for a year (sits down, takes a moment). He’s the only person alive who knows my true weight. He is inspiring and understanding and won’t put me through gym-bunny crazy intensive workouts. He’s got a lovely holistic approach, perfect for a systemic illness like MS which affects pretty much every single part of your life.

As I write, I have the polish ready to clean up my doorstop kettlebell. I’ve ordered a dri-fit pair of leggings and t-shirt. I am petrified.

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Jun 16 2014
4 Comments
Symptoms and Treatment

MS For Teenagers

AppleWe’ve had a very trying weekend and things came to an explosive head on Saturday evening.

The Teenager: WHY are you so tired just now? WHY’S your face all red? WHY are you hugging the fan? Oi, WAKE UP! Mum, mum, mum, mum, mum, mum, muuuuuuuuuuuuuuuuuum. Can I have a Dominos?

Me: I’m awake. You’ve just had dinner so you can’t be hungry. And we’ve talked about this before. Sweetie.

Teenager: Yeah, you get…..tired…..and hot….and grumpy……and, I mean, like, I get tired and hot too. My X-box gets hot. The cat gets hot. And it’s summer, like d’uh. And I’m hungry all the time coz I’m growing. So ner.

Slammed door. Me, in pieces on the sofa.

How can I explain to him? I wrack my heat-addled brain, jot down a few points then fall asleep.

Later that evening, he thumps downstairs and I swiftly intercept him on his way to the fridge. We sit on the sofas. He slumps, like, whatever, working his way through two Müller Corners, a croissant and the lollipop he gave me earlier (the one I was keeping for later).

Anyway, here goes. Keep it simple. Ok. Heat intolerance – imagine you’re in a sauna and the door is locked. An hour later, exhausted and gasping for breath, unable to think clearly, you have to put the oven on and cook dinner. (at this point, The Teenager plays his trump card – ‘you could have called Dominos, dur’). Smug grin. I calmly continue; then you have to make a few phone calls, reply to some emails, do the laundry, feed the cat and water the plants. All the time you’re feeling hotter and hotter. The bits in your brain start to melt in the heat and send out the wrong messages and your body just doesn’t do what it wants to.

The Teenager: Oh. I get like that when I’m on the rugby pitch, for like, hours.

Me: Exactly! Imagine they won’t let you off the pitch to have some water. They’re pushing you to keep on going. You’re boiling.

The Teenager: Oh. ‘K. So why are you so tired. Tired, tired, tired, all the time. S’not fair. All the other mums don’t get tired. S’not fair, s’not.

Right. It’s not really tiredness like you know. It’s kind of the same as when I get hot. My brain (Teenager sniggers) gets tired out from working extra hard to keep sending the right signals so it gets tired more quickly than, say, your brain (snigger). That’s why I have to sleep a bit more, to rest it a little.

The Teenager: Uh, ok. Can I go now? Got friends waiting for me – X-box party. Paaaaaaaartaaaaaay! See ya!

Did I get the message through? I wander through the house, fretting. Until I come across my lovely, neat desk. Everything in it’s place. Except, under my goldfish paperweight there’s a takeaway pizza menu, topping choices thoughtfully highlighted by The Teenager.

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May 16 2014
8 Comments
Symptoms and Treatment

Flip Flop Flap

vampireVampire season is upon us once more.

We have a mini-heatwave. I have been following the weather forecasts avidly, inwardly rejoicing when I heard there will be showers next week (I live in Wales; by law it must rain at least every few days).

I’m not a kill-joy. I am sooo happy to see people trundling up to Asda’s and back again, cars stocked full of barbecue supplies.

I like to see everyone decked out in summer prints and of course, it’s always a delight to see a whole bunch of men ill-advisedly walking around topless. Eww.

I’ve been invited to a family do tomorrow. They’re well used to me by now – my mum called and said, ‘don’t worry dear, we’ll put you in that dark corner with the parasol over you’. I’ll just shout across the garden when I need more ice cubes to chuck down my t-shirt and let the kids run around squirting me with their water pistols.

I must sound really grumbly. I love the sun, I really do. At a distance. Through the window. Sadly, The Teenager has whipped my large floor fan upstairs as apparently he can’t study without it. Although he seems to study perfectly well at the same time as chatting to his friends on Skype in his impenetrable, grunty language. He’s also recently ‘discovered’ Duran Duran and my house now sounds like an Old Skool Disco.

Anyway, I’m not complaining. Even though I don’t wear flip flops any more – foot drop is a nightmare with them on and it’s not inconceivable that I could catch the front of them, flinging myself forward, face-down on to the nearest available pavement. I have bought some floaty tops and sunglasses. I will hopefully be rocking the chic Continental look; slightly bored and above these childish solar delights.

The good news is, there is the consolation that with MS heat intolerance, it is imperative to self-prescribe ice cream. Emergency Medication. Plus there is the added bonus of having a blast of lovely icy air whenever I open the freezer to admire my range of Ben & Jerry’s.

So this weekend, I will be lurking in dark corners, vampire-esquely. Except I won’t have a lovely pale vampire face. I’ll be the one shining like a bright red beacon, gripping a tub of Phish Food….

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May 02 2014
13 Comments
Symptoms and Treatment

Never Never Land

fairy dustI have been living a dream.

The dream is simple – no more relapses. No more fear.

But as with all dreams, we wake up.

Campath. It has been a marvel.  I adore it. I embraced it in the hospital. It quite literally gave me my life back but with a proviso. My neurologist told me I could expect ten good years. Yet at 37, that seemed an eternity.

A couple of days ago I met  a wonderful woman who had double the number of infusions I had. Her story mirrored mine. Eight fabulous relapse-free years.

Now she is in a wheelchair.

I have slept badly. I jolt awake, feet twitching and burning, dark thoughts running through my mind unchecked. Believe me, I don’t fear a wheelchair. I fear the loss of control.

MS is weird. We have no idea what the future holds. Mine may have rainbows arcing over the next few years. Or it could be the opposite. Do many of us ‘wish’ we had an illness with a more predictable disease path?

So I kind of feel I am back to stage one. Two years ago, almost to the day, when I sat in my car, dreading the neurology meeting. I knew it would change my life. It did. And  it keeps on changing.

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