Oct 05 2012
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My Ramblings

Chocolate dreams

Chocolate haunts me. Last night a giant Jaffa Cake chased me down the road. When I woke up, I could almost taste it. I adore chocolate and it worships me in return. So much so that it hangs around my thighs, stubbornly clinging on for dear life . I know we need to go our separate ways, but it’s a really comforting friend to have around. Always available, cheap and comes in endless varieties.

Multiple sclerosis has given me a great excuse – when the worst has already happened, who cares if you treat yourself now and again? So many other things seem more important than whether I am knocking back the chocolate buttons by the bucket-load. Just had an excruciating lumbar puncture? Have a family-sized Galaxy bar. Fallen flat on your face in a packed restaurant? Order a profiterole surprise to share then grab both forks.

In a desperate bid to curb my cravings, I came up with a cunning plan. Advent calendars are on sale now. What if I were to buy one and only pop open two windows a day? Plus, I’ll get some early Christmassy vibes going. I reached Christmas Eve that same night and put the pillaged calendar out for recycling. Ok, Plan B. Eat no chocolate all week, then have a blow-out on Friday. I was cured! I ate so much of the stuff, I vowed never to eat it again, until I woke up on Saturday, noticed there were still a few Maltesers left in the packet, and I was lost in a chocolate haze once more.

I know, I could keep on trundling out the old MS excuse for ever, but where do I draw the line? I don’t want to give in just because I have MS. Perhaps because I have MS I should look after myself more, not less.

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Oct 04 2012
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Emotions

It’s all me, me, me

Having multiple sclerosis, just how hard is it to show sympathy to people who are a little under the weather but who make a lot of noise about it? Has MS made me less compassionate, and do I somehow think no one else has the right to moan to me about their own troubles?

I only ask as two friends and The Teenager have recently been struck down by a bad cold. All three are male, so naturally ‘man flu’ has been mooted as a possibility, but to be fair, they do seem very poorly and I am trying to be sympathetic, listen attentively and give helpful suggestions. I care about these people and hate to see them ill.

But a teeny-tiny-little part of me thinks it’s a bit like expecting a poor person to empathise with a rich guy when his Porsche is in the garage for repairs. Sure, it’s an inconvenience, but it’s temporary and normal service will resume soon enough. I feel like saying, ‘ill? You’re ill? You want to see what ill is?’ How awful is that? What sort of person am I, to even think that?

I have bored my friends to tears over the last year, constantly dissecting symptoms to the nth degree, analysing lesions and spilling out my fears for the future. They have sat with me through a merry-go-round of appointments, held my hand during MRI’s and kept my glass of wine filled. So I feel very small-minded to begrudge them that little bit of extra attention and help when they need it. I have offered to drive 18 miles through the rain to bring supplies to one friend and have tucked The Teenager up in bed with a book and hot Lemsip. This is one battle the MS Monster won’t win. MS may be for life, but so are friends and family.

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Oct 03 2012
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Work and Studying

Job centre blues

After burrowing around in the murky depths of disability and work legislation, I have now been assigned a Disability Employment Advisor and on Monday I went to visit her at the local Job Centre. To cut a very long, sorry saga short, I have been bullied quite badly at work ever since my diagnosis of multiple sclerosis was confirmed and I need to find a new job. Pronto. Can you believe this is still happening in 2012?

Anyway, I’m told to bring my CV and turn up at 11.20 sharp. I arrive early and am met by two doormen. Bouncers? Honestly, they stand there in dark suits, look me up and down with raised eyebrows and I’m half expecting them to say ‘sorry love, you can’t come in here looking like that’. I’m on the list though, so I’m in.

I’m directed into a vast, bland, utterly depressing room with splashes of green logo and dotted with a bewildering array of prams, shopping bags and people slumped on the sofas. Other people are hunched over large ‘job generating machines’, pressing and clicking buttons like they’re playing one-armed bandits in a pub. I pick my way through the crowd, perch on the edge of a dingy sofa and wait. And wait. The staff call people up to desks, looking bored out their skulls (well, they already have jobs) and still I wait, my CV wilting in my sweaty hand.

Finally, I’m called. We run through the ways MS can get in the way of working, my skills, my career aspirations and which hours I can work. My advisor then turns the computer screen round so I can see it. Two possible jobs. Cleaning and daytime pizza delivery. Huh?

She tells me I am over-qualified for most of the jobs they have, but due to my reduced working hours, childcare issues and disability, that’s all they have. I thank her, walk unsteadily to the door with as much dignity as I can and leave it all behind. On second thoughts, I go back, slip past the bouncers and yank a ‘How Did We Do?’ form from the front desk.

On it I write Abandon Hope All Ye Who Enter Here, shove it in the box and go.

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Oct 02 2012
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Work and Studying

Back to school

It’s Autumn, it’s night class season and I’m ready. Tonight will be my third week back at school. I spent hours carefully selecting a new course, paid my money and filled a trolley at Staples. New notebooks, new pencil case, lots of pens, paper clips, highlighters, folders but managed to stop myself from buying a Hello Kitty school bag to put it all in.

I have a chequered history of night classes. A couple of years ago it was knitting, in a bid to join a Stitch and Bitch class in the local cafe. In my fourth lesson, the lovely teacher looked at my homework, sighed and shook her head sadly. Last year I tried a one-day course instead, learning how to make my very own Christmas wreath out of locally-source willow branches. Along with ten other eager beavers, I grabbed six foot lengths of the stuff, ready to bend it into a circle but ended up poking a rather serious-looking woman in the eye. My finished wreath was a square of twigs, held together by an awful lot of thread and withered on my door after only a week.

This year will be different. I have moved on from crafts and have chosen something scarily academic – a new language. Which is kind of ironic, as my first major relapse involved me losing the ability to string a sentence together (The Teenager still does a great impression of me). Ever the optimist though, I am determined to master it. So far, I can tell native speakers that I enjoy coffee and swimming and hockey (!), and there’s still 28 weeks to go.

I am a bit of a swot, always keen to get my homework done and learn new words, and have got into the habit of sitting in the car during The Teenager’s rugby training listening to a downloaded course. Note to self though – must get out the habit of sticking my hand up in class. There’s only four of us, I am in my thirties and the teacher is probably younger than me.

The best bit though, is that there is a Starbucks on site, so I can sit for a while before class, supping on a large double-shot Americano, checking over my notes and polishing an apple for the teacher.

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Oct 01 2012
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Symptoms and Treatment

An electric feeling

One of the many symptoms of MS I had yet to experience has struck with full force. Those electric shock sensations, also known as l’Hermittes sign or Barber Chair Phenomenon, had up until now only fleetingly bothered me, lasting no more than a couple of seconds each time.

I was helping a friend strip wallpaper over the weekend (I know, the excitement!), when they started up. A bit like labour pains, there was some time between each to start with, but they slowly increased until it was an almost continuous pain. I won’t bore you with the details, but the sensation was so odd and so bizarrely painful, I laid down my tools, got in the car and slowly drove home, a journey made more difficult as I couldn’t move my head and a tractor had broken down in the middle of the road.

And there’s the nub. Just when you think you have MS under control, it decides to stick a hand in its big bag of symptoms and chuck another one at you. It’s amazing what you can come to regard as normal – the tiredness, the dodgy walking, the balance problems, the twitching, the numb hands, the overwhelming desire to stuff my face with chocolate – and you adjust your life accordingly. Everything is as good as it can be, until something like this knocks you back to square one again.

I have been wondering though, how did MS’ers describe the pain before electricity was invented?

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