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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Skydiving or an Adjustable Bed?

confused faceI love MS magazines. It’s important to keep up to date with latest developments, policy and research. That to one side, I am confused.

On the one hand, there are articles about ‘triumph over adversity’ – people with MS skydiving, firewalking, trekking the world despite all the odds. On the other, the adverts paint a very different picture – catheters, adjustable beds, respite care, Motability, bath lifts, etc. So which is it it be? Which camp do I fall into?

Well, neither. I’m not brave enough to triumph over my adversity. The nearest I got to skydiving was when the builder jumped out of a tiny plane over the Arizona desert on his 40th. I was so traumatised to see my friend suddenly drop out of a plane that I clung to the bemused pilot until we landed.

I’m also, thankfully, not at the stage yet where I need to consider a versatile, easy access shower or electric scooter. I know many of us are, don’t get me wrong, but where is the middle ground? I feel both inadequate and scared. Are these the only two ways to live with MS?

I’m probably a typical person with MS – in my 30’s, with a child, trying to hold down a job and worrying about things we all worry about, MS or not. The bills, the economy, hoodies, the NHS, the price of food. I haven’t got the time, or childcare, to set off for China or raise thousands and thousands of pounds.

I do what I can to support MS charities. I trained as a support volunteer. I’m in a working group. I attend meetings and rallies (‘I’m not a scrounger, I have MS’). In my own little way, I hope my blog too, can show that life goes on with MS.

I used to work in advertising, I know companies are particular about where they place their ads. So why do they ignore us? There’s 100,000 of us in the UK alone. I want to see adverts for restaurants, travel companies (not just insurance), sparkly flat shoes, make up, days out.

I will jump (carefully) off my soap-box now. Rant over. Is it just me?

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Getting Plastered

Back to work, but luckily the builder’s son is doing a week’s work experience with him, so at least there is someone as incompetent as me on the job.

A very large skip was delivered early, so our first lesson was how to load it correctly. All flat stuff in first, then stack the edges with other, bigger flat stuff.

Finally, place all the rubble sacks on top. To finish off, all the gaps are plugged with baguette wrappers, coke cans and old Sun newspapers.  I just thought you chucked everything in, squished it down and hoped for the best.

On a break, I got chatting to the painter. Anyone else ever find when they mention MS, someone will always say, ‘ Oh, I knew someone with MS. Terrible it was. Just awful. Downhill like that (clicks fingers loudly).’ Oh, cheers mate. That’s supposed to make me feel better?

We moved on to the plastering. Quite possibly the most boring, tedious, soul-destroying job ever. All I have to do is follow the builder round and round the room, scooping out plaster for him. Yawn. Then clean out the buckets. Yawn. Then do it all again. Then we wait for it to dry, then go over it again and repeat five or six times.

Last job, pipe work. So boring I won’t even go into details, suffice to say it’s maths with bits of copper. Some jobs just drag. And I was freezing, even though I was wearing the woolly thermals my mum bought me. It was one of those days. Next time will be better as the kitchen units will be delivered and I can hopefully make myself more useful.

Mid-way through the day, The Teenager texted me to say his wrist was sore again (see Muddy Hell for details…). I texted back that I would bandage it up when he got home, and no, he couldn’t have a Domino’s pizza for dinner to make him feel better.

I got home tired, cold and sore. Maybe I will take up the builder’s idea that I start up his social media instead of helping fit kitchens? He wants to create a Twitter account for his business, so must start thinking of suitable, buildery-type tweets. Something like – Blimey, the price of bacon sarnies is shocking…….

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