Monthly Archives: June 2014

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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Stumbling Back to Happiness

If you stumbleAfter almost three years of MS-and-self-imposed exile, I am slowly but surely reintroducing myself to polite society.

My cunning strategies seem to be working. Often it’s the small(ish) things.

Such as, I hate the heat and it hates me back with a blazing passion.

Now though, rather than worrying about my tomato face, I plan a set time outside, give myself one last blast of the air-con and pop on the sunglasses.

I can often be found lingering at the chest freezers in Iceland and worry they’ll ban me soon as I only ever buy eggs.

Who cares if I’m bright red? I’m out, it’s enough. And when my legs start to buckle I know it’s time to grab a Slush Puppie and head back to the car, mission accomplished. When I’m in work, the boss agrees to go easy on me as long as he can still laugh when I stumble. Who cares? We’re good friends going back years and I don’t want anyone to tip-toe around me (wish I could do that without losing my balance and falling over – sigh).

As regular readers are aware, I’ve also signed up with a personal trainer. Who’d have thought it even a few months ago? My Nike joggy bottoms didn’t arrive in time for my first session, but who cared that I turned up in jeans and an Andy Warhol t-shirt? Certainly not the trainer who still made me learn how to execute a perfect squat, which was surprisingly difficult. Ceiling to floor length mirrors didn’t make the job any easier. But I did it. And I’m going back next week.

Only problem is, I got a little bit carried away afterwards. The Teenager came home from school to find me saying, ‘hey, look, look at this! (squat) look what I can do! (squat)’ Naturally he was less than impressed and retreated backwards to his bedroom, on his phone, no doubt tweeting my sorry plight to his mates. I paid for it the next day though, barely being able to walk down the stairs. Pesky muscles screaming in shock at being used for the first time in years.

Anyway, I finally knew that I was officially ‘back’ on Saturday. I’d arranged to meet a good friend for dinner, meeting first at his place. Great. Did my hair, got dressed, fed the cat and left. I knocked on his door:

Him: Huh?

Me: Dinner? Arranged the other day? My kid’s away, your kids are away?

Him: (spluttering and looking back longingly at his Lord of The Rings dvd on pause) But, honestly, I really didn’t think you’d turn up. You’re always so tired. Was expecting a text from you to say you couldn’t come. As usual. You okay?

Me: I’m good. I’m great! I’ll wait, you get ready. Got any chocolate in the fridge?

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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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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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My Life As A Half-Orphan

Father's DayDadExcuse the sensationalist title.

Tomorrow is Father’s Day, that one day in the year I dread/look forward to in equal measure.

My dad died a few months before my 5th birthday as a result of complications arising from his MS – the biggest complication being that he had MS in the 1970’s.

No MRI’s, no DMD’s. The first picture is of me at nursery before he died. That dress! And I still bite my lip.

Anyway, I first became aware of Father’s Day when the kindly folk at Social Services held a party for all us peeps who had lost a parent (careless). Being told at every juncture that this was for our benefit as we were poor, deprived children who couldn’t hope for much in life put paid to that and I left, humiliated and confused.

In primary school, I dreaded Father’s Day. We were told year in, year out, to draw our family. In Year 5, I drew my older brother standing on a rock, so he looked taller than the rest of us. If the teacher squinted, she could perhaps think he was my dad, as I placed him before my mum. I was embarrassed. Divorce was unusual, the death of a parent was non-existent.

In Year 6, I was called forward to the teacher’s desk on the first day of term and asked about my dad. Must have been a marked-point in the register. I replied (in front of the entire class) ‘Yes, he’s dead, can I go back to my seat now?’

Fast forward a good few years to my wedding day. A mixed blessing. I missed my dad. Fast forward some more years and I come to the whole MS palaver. I got his eyes, I got his MS. I hope I got his cheeky sense of humour too.

I’ve cobbled together tales I’ve learned about him – how he hung out tea-bags to dry on his sister’s washing line to wind her up in front of her neighbours, how he sat before a glass of water in a pub for so long, when people came up to him and asked him what he was doing, he told them he was waiting it to turn to wine. Gentle humour, but it makes me smile.

Now, I don’t feel so sad. He was 35 when he died, I’m now 40. He really does live on – in my son, with his cheeky grin and knowing look. I just wish he had the chance to meet his grandchild.

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