Tag Archives: relapse

Feb 18 2013
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Symptoms and Treatment

Putting On Mascara With Boxing Gloves

Ever tried putting mascara on wearing boxing gloves? Or holding a lovely cup of hot coffee? Pretty tough. My last relapse affected my hands and just for a laugh, they still play up every so often and this weekend was no exception.

Like most relapses, it came out of the blue. One day I was elegant(ish) and my hands were just things that did things hands normally do. I didn’t really give them much thought.

Until the morning I flicked the kettle on and knocked it over, swiftly followed by my cup. Odd. When I left the house that morning, I missed the door handle. Odder.

I tried to explain to the MS nurse that my hands were either a few seconds too quick or a few seconds too slow, they drop things unexpectedly and sometimes they’re so numb, they feel like boxing gloves. It doesn’t sound like such a huge problem, but socially it’s dire.

Putting on make-up is comical – I gave up on eyeliner months ago and mascara wands hurt like hell when they’re poked in the eyes. Lipstick goes on well until, blam, whoops, dodgy line – The Rocky Horror Show’s got nothing on me.

Wine glasses are a minefield. I’ve smashed countless. Be warned, never clink glasses with me, just say cheers and nod. All my plates and bowls are chipped and you can hear me doing the washing up a mile away.

If I’m walking through a cutesy, arty gift shop, I have to keep my hands rigidly by my side or ever so carefully reach out, inch by inch, to pick something up. I can clear a shelf of pottery in one fell swoop. And my days of playing KerPlunk and Operation are long gone.

I used to like craft work but can’t knit any more and the glue gun’s been in the drawer so long it’s seized up. I tried to make a Christmas wreath out of paper hearts and glued everything except the paper. The cat made herself scarce so now I scroll through Pinterest and sigh wistfully.

I persevere though. I am going to invest in melamine plates and plastic wine glasses and I will make that wreath by next Christmas if it kills me. If you see it, be polite and please don’t snigger….

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Dec 19 2012
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Daily Life

Eat, Don’t Eat

Do you know what really, really annoys me about Christmas time?  We’re encouraged to fill our faces, over-indulge, drink too much, inhale whole tins of Roses and slump on the sofa all day long. Which is lovely. I don’t need an excuse at all. But isn’t it so annoying to pick up the newspaper on Boxing Day only be told off for our over-excess and shouldn’t we think about dieting? Make your mind up.

I am loving this week before the Big Day. My social diary is full, I’m catching up with my long-neglected friends and the usual timetable is suspended. There’s expectation in the air. We’ve reached the fag-end of the year and it’s time to reflect and move forward, fueled by chocolate and mince pies. Come the weekend, it will be totally acceptable to have a glass or two of mulled wine in the afternoon, and if I feel like dropping off in front of the telly, I can. Then I’ll pour myself a Bailey’s  – only at Christmas – and decide what else to stuff my face with.

Boxing Day will bring me back to earth with a thud. Magazines and newspapers flood into the newsagents, full of diets, rebukes and remorse. My local gym will hang banners up chiding me for my gluttony, offering me a free towel if I’m one of the first 50 to sign up for membership. Can’t we just enjoy a week or two of sheer indulgence without the shame afterwards?

It’s exactly the same every year. It’s just like the holiday adverts that pop up on telly. We’re deep in the middle of Christmas, we don’t want to be thinking about booking our next holiday. We’re praying for a little bit of snow. Can’t you wait until mid-January? Christmas isn’t over yet. I just want a chance to relax and enjoy myself.

I still haven’t lost the weight I put on with the steroids I took for three different MS relapses, so give me a break. If I want to buy a Family Circle box of biscuits and eat them all by myself while watching The Sound of Music for the 27th time, I will. I can blame MS. It’s a great excuse.

 

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Nov 30 2012
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Daily Life

Just Another Day in MS Land

Here we go again. The relapse is-it-or-isn’t-it game is back. After a week full of energy, I am once more being held hostage by the sofa and daytime television. I am absolutely, ridiculously exhausted beyond reason.

I spoke to the MS nurse about this and she said that it was unlikely to be a full-blown relapse, more a temporary increase in symptoms, given that I had Alemtuzumab in the summer. This is supposed to cut down the relapse rate and therefore slow down the progression of MS. My spirits rose, until she added that it could still be a relapse though. I need to monitor things until I see the neurologist next week for my 6-month check up, but she thought the symptoms are more likely to be due to the stressful work situation.

Luckily, I had already completed my work quota for the week, the house was clean and The Teenager’s rugby kit had been washed, so even though it was incredibly boring , at least I wasn’t panicking. Too much. And when I say boring, I mean really, really boring. Too tired to read, I watched inane telly – lots of people with antiques, people rubbing their hands in glee at buying a cheap house at auction, shouty people shouting at other shouty people and ghoulish people chasing after other people’s inheritances.

When I wasn’t watching telly, I was sleeping, as I was too bored to do anything else. A whole packet of chocolate toffees somehow disappeared. I once again counted the cobwebs on my ceiling and admired my Christmas decorations from the sofa. The biggest problem I faced was cooking dinner when The Teenager got home. I had bought ingredients to make spaghetti carbonara . Not that difficult – bit of cream, Parmesan, bacon and a couple of eggs.

Feeling like I’d been run over by a juggernaut , it became a Herculean task. I briefly wondered if he would notice the difference if I made Super Noodles instead. At the last minute, I decided to kill two birds with one stone. Cancel the cooking, put away the ingredients and collect some Teenager brownie points. We had a chippy. I will make the carbonara tomorrow.

 

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Nov 26 2012
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Daily Life

Christmas All Wrapped Up

Well, possible relapse to one side, I am sadly excited to report I have Christmas all wrapped up.

This time last year, I was ‘lucky’. I was on my second course of steroids for yet another relapse and I was flying. I couldn’t sleep, I had extreme amounts of energy and I was absolutely buzzing. I would wake at 4am every morning and, possessed with a demon drive, I wouldn’t get to sleep til gone midnight. My house has never been so clean – all that energy had to go somewhere.

The lightbulbs were dusted, the skirting boards washed down and every single bit of cutlery cleaned to within an inch of its life. I put the tree up one morning at 5am. It was fully decorated and lit by 6am. I whizzed around supermarkets, wrote endless lists and had everything planned with military precision. Only problem was, once the steroids had left my system, I was a rag doll, limp and lifeless, with a fixed grin on my face.

This year, I have fulfilled my steroid quota, so no bonus energy for me. With that in mind, and with the spectre of a relapse still looming (is it or isn’t it, darn it??), I need to get Christmas sorted, just in case. So yesterday, I finished my present shopping, chose wrapping paper and tasteful ribbon and even rounded the trip off with a quick visit to Starbucks, The Teenager in tow. I had bribed him with a chocolate shortbread and one of those strawberry drinks with squirty cream on top.

This Christmas, the theme in my house is ‘Scandinavian Minimalism’, cleverly hiding the fact I have no energy to loop endless decorations onto a huge tree. I bought two small trees and decorated them simply, with lots of white lights and nothing else. I found a sculpture of a reindeer made from driftwood and will be wearing a Sarah Lund jumper for most of December. I will disguise my tiredness with Nordic gloominess and a contemplative demeanor. Meatballs and cloudberry juice will be served, along with almond biscuits and salted liquorice.

One thought keeps recurring though. Can I save up my steroid quota next year and use them at Christmas? Mandatory steroids for all those with MS! A new campaign? Right, where’s the Akavit? God Jul!

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Nov 24 2012
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The Teenager

Going on a Long Guilt Trip

Still no let up from the crushing MS symptoms. Still don’t want to say ‘relapse’ out loud. Worst thing is though, all the guilt has come flooding back.

The Teenager has been incredible since this whole MS thing started, and has started telling his friends, ‘my mum’s got what Jack Osbourne’s got’. The height of cool.

But he crumbles sometimes, unexpectedly, and it’s the saddest thing to witness. One day I told him off for not brushing his teeth. Five minutes later I hear loud crying from upstairs. I find him frantically scrubbing his teeth, taking huge, gut-wrenching sobs. ‘I hate MS, I hate what it’s doing. I hate you having it’. My heart broke into tiny pieces.

I try my hardest to hide symptoms from him. I sleep before he gets home, stuffing the duvet down the back of the couch. I have also trained myself to cat-nap and be instantly awake the minute he comes back from school. I write down key points about his school day so I don’t forget them, such as maths test, horrible PE teacher, German homework. I use Touche Eclat under my eyes so I look more awake and his rugby kit is always, always clean and ready. It’s a matter of pride.

But the guilt is relentless. I should be doing more with him. I should take him to town after school one day for a surprise and buy him a new pair of Vans. I should plan interesting day trips. We used to love baking together (thank you, The Great British Bake Off!), but we haven’t done that in a while. I haven’t the energy to clean the kitchen afterwards. The Swedish chef from The Muppets has nothing on my son.

So, I cut corners. I pass off M&S food as my own, leaving the chopping board out as ‘proof’ of my hard work. I spring money for pizzas (cool mum!) to save cooking, I buy more treats than usual and make sure his Lynx supply is fully stocked. I allow lots of sleepovers, so I know he’s having fun, but it gives me much-needed space too.  I make sure I am there for him, as much as I can be.

I hate what MS is doing to our little family. If I can just hold everything together, we will be fine. And maybe I won’t need to have Dominos on speed dial…

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