Monthly Archives: February 2013

The Waiting Game

Like most people with multiple sclerosis, I am now an old hand at waiting around for appointments and yesterday was no exception. The eye saga continues and I was back for my follow-up.

Armed with my mum, a book, a notebook and pen (to jot down my musings, natch) and a bag of raisins, I went to hospital again. We have our routine down to a tee now – shops, coffee, loos. To shake things up a little, mum bought me a fruity, chewy cookie instead of a biscotti.

First, I had a Humphrey Field Test – a bit like sitting in front of a Space Invaders screen, clicking a joystick whenever I saw a little light. I scored nearly 100% and was absurdly pleased. Next, it was over to the other clinic to wait to see the eye doctor.

Being an old hand, I registered the expected crowd of people and expertly (and with some panache) wedged myself into one of the seats and casually took out my book.

Twenty minutes later, I got called through to have drops put in my eyes to dilate my pupils, which blurred my vision so I put my book away and people-watched instead. An old man in loose trousers trumpeted into his tissue then closely examined the contents. An astonishingly well-behaved toddler toddled around his pregnant mother. The receptionist directed endless people to the loos and a couple argued under their breaths.

I used to be such an impatient person, huffing and puffing if I was kept waiting, dramatically tapping my watch and rolling my eyes. Why? It didn’t do me any favours and no amount of loud sighing would bring the appointment round any sooner. I guess MS, in its own way, has made me a much more patient person. I am almost zen-like in waiting rooms now, like a little Buddha.

Eventually, I was called in, pupils fully dilated. Ran through the symptoms, no change. Retina is still a cause for concern so I have a follow up in four weeks time. Same time, same place, same waiting room…

(If you’re new to this blog – the eye saga is here: Eye See and Eye Don’t Believe It)

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Bubble The Cat (In Pictures)

Some of you have asked to see my cat, the one I talk about far too much. Here she is,  The Stalker (Bubble). Notice she looks grumpy in all the pictures except the one where she is on my duvet, on my sofa….

Patrolling the living room, ready to trip me up…

Waiting at the bottom of the stairs, ready to trip me up…

On the kitchen windowsill, sending telepathic thoughts, ‘FEED ME’

On living room windowsill, staring at me (I’m at my desk)…

Staring at me while I’m lying on the sofa…

Finally. On the sofa. On my duvet. Happy now.

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The Plugholes Are Now Sparkling….

….I have also done three loads of laundry, washed all the cushion covers, baked a banana and walnut loaf, cleaned the fridge, shredded a huge pile of paperwork and sorted out my kitchen cupboards.

Domestic diva? I wish. It appears I would rather pluck a bunch of yucky hairs from the plugholes with a wooden barbecue skewer than sit down and study.

I have one year left of a six-year part time degree course. I could have graduated last year, without honours, but I’m awkward like that. Or a masochist. University officially started on Saturday, but I didn’t. I tried. I laid out all the books, printed off loads of information, stocked up on post-it notes, new pens, a brand new folder.

I sit at my desk, scrolling through the online learning guides, thinking, ‘oh, how interesting’ for about 15 seconds, then click on to my Twitter feed instead. Yesterday I sat down to read the newspaper for five minutes and an hour later I had read it from cover to cover. Who knew the letters page and obituaries could be so fascinating?

I can blame MS for this, but only partly. At the end of the last academic year I was in the middle of a pretty major relapse, the steroids were keeping me up all night and my brain was in meltdown. It refused to remember one single fact, one theory. I struggled through and gleefully chucked the notes in the bin after the exam. Last July. Now, 7 months later, it’s hard to pick up the thread again.

The thought of planning and writing an essay fills me with dread. Researching, indexing, referencing all seem like scientific impossibilities. I have printed off our official Harvard reference guide (all 35 pages of it) and have only read up to page 8.

To prove I could do it, I pulled out all my essays from last year. Bad move. Who wrote these? They were pretty good and I was impressed until I realised I had written them. My standards were obviously a lot higher back then.

I will muddle through. I will play with the post-it notes and highlight noteworthy points in my books. I am hoping that if I read the same pages over and over again I will absorb the facts by osmosis. Until then, I have the vacuum cleaner filter to wash and lightbulbs to polish….

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A Helping Hand in Limboland

sad stick womanSometimes I wish I could go back in time to that terrifying morning when I woke up and couldn’t speak properly or walk in a straight line. If I knew then what I know now, I would have been a very different person. For someone whose father had MS, I knew surprisingly little. I had no idea what  CIS was, what an MRI would show, why I had to have a lumbar puncture.

I was in Limboland. I might develop MS. Or I might not. It is a cruel waiting game. I didn’t understand the ‘multiple’ part of multiple sclerosis. I left the clinic after that first relapse utterly petrified. What was I to do now? I had been given a couple of MS leaflets and information about how to contact the MS team. But if I didn’t yet have MS, why would I be given that? I was bewildered.

I accessed a few forums, one dedicated to Limbolanders and I gained a huge amount of information (a very, very special mention to ‘Rizzo’ who was amazing in answering all my queries). The forums were a lifeline, but at a cost. A lot of people had been stuck in Limboland for years, some well over a decade. Despair and anger oozed from the forum. We were all in a nasty, dark waiting room and I would feel a painful stab of strange envy when someone posted that they had been diagnosed, and were now leaving us behind; they had the golden ticket.

I read everything I could about the McDonald criteria, ticking off the four points bit by bit. Finally (but only 10 months later), I had my ticket. My brain threw up more lesions, far too many and I was diagnosed. Possibly one of the best and worst days of my life.

I wish I had been handed a step-by-step guide to life in Limboland, clearly explaining the whole diagnostic process, the frustrations, the waiting. Could someone please publish this? Letting us know that you have to go through so much, from first relapse to eventual diagnosis. Break us in gently. Please don’t throw us in the deep end.

So, to everyone diagnosed with MS, look out for the Limbolanders. Treat them kindly. Be an inspiration and show them we are not so bad, it’s not so scary. There is a life after diagnosis. Aren’t we all proof of this?

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Off My Trolley

Regular readers will know that me and supermarkets don’t have the best relationship. Since MS turned my brain to mush, supermarkets confuse me, trip me up and make me buy things I don’t want (travel toothbrush, pom-pom air freshener for the car).

I’ve successfully managed to avoid them for the last month or so, but the list of things I couldn’t buy locally got longer and longer and I finally had to take the plunge.

Yesterday was the big day. I made a cafetiere of coffee, strong and black, for courage. I gathered my shopping bags together, got my list, double-checked it. I could do this. I was ready. Drove off. Turned round. Forgot my wallet. Drove off. Got parked. Checked lippy in mirror and I was good to go.

Wrestled with trolley and yanked it into the store. Deeeep breath. Huh? They’ve changed the layout round again? Now I had to go up and down every single aisle. The Teenager needed ingredients for a baking lesson in school. He told me he needs a huge jar of Nutella (I was born yesterday) and the cat wanted to try a different brand of food.

I picked up the bin bags, the envelopes, the printer paper, the cat food, the garlic, the shoe polish. Excellent. Just about got everything on the list and avoided the end-of-aisle offers. Only the Nutella to go. The place was lovely and quiet and I glided around feeling serene and calm.

My final aisle. I swerve past a parked trolley when I hear, ‘What are YOU doing here? We thought you were ill, but you look so well?’. Oh god. It’s that mother from school. The one with the most intelligent child in the universe. I listened to her reel off the prodigy’s most recent accomplishments, made my excuses and left, zooming (wonkily) straight for the checkout.

Got to the car. Fabulous. The car next to me was parked so close, I couldn’t open the drivers door. I stomped around, then stomped around some more. With a dramatic sigh, I flung myself into the passenger seat then very inelegantly shifted myself over into the drivers seat with a lot of huffing and puffing. Drove home, chucked a meal in the microwave and sighed.

Then I got a pen and piece of paper and started my new list. Can’t wait for next month.

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