Tag Archives: steroids

Jul 29 2013
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Symptoms and Treatment

Sofa, So Good

couch potato 2The good news is, the steroids I took alongside Campath have left my system.

The bad news is, my sofa is beginning to take on a Stumbling-shaped dent, so much so that if the cat dares to jump onto it when I’m not there, she slides into the dip in the middle. Which is quite funny, if, like me, you don’t get out much.

With the steroids gone, at least I sleep through the night and no longer wake up at 2 am with a burning desire to polish the skirting boards or rearrange my herbs and spices into alphabetical order. All I’m left with now is overwhelming fatigue, but as an experienced MSer, that’s second nature. If I had to take a test on managing fatigue, I’d pass with an A plus and get a shiny sticker.

The Teenager is back from London. The washing machine is on, there’s thick clouds of Lynx in the bathroom, food is disappearing from the fridge at an alarming rate and I’m tripping over his size 12 trainers. All back to normal.

My plan for this week is a simple one. Sleep, watch telly, read and repeat. The aim is to a)recover completely and b)bore myself so silly that I’ll be ready for world domination at the end of it. Or something similar.

My sofa will be my command centre. I have my tv listings magazine, the land line, my mobile, the remote control, a selection of hand creams in case I feel like doing something energetic. A book, a pile of magazines, my duvet, the cat, a bag of sweets (or three), and a brochure for the local arts centre. I might not be able to go just yet, but I will absorb some culture by osmosis.

Choice of clothing is also very important. Nothing too tight fitting. The aim is to be comfortable, but also, when I have visitors, I want to look floaty and serene. No slippers (trip hazard and, let’s face it, a touch naff). Hair will be washed, as I don’t really want the mad woman in the attic look.

It’s a tiring business, being poorly. Actually, it could be my full time job. Well, at least for a week. After that, I will be back to my normal self. Lazing on the sofa, eating sweets, etc…..

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Jul 25 2013
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Symptoms and Treatment

Campath 2, Multiple Sclerosis 0

fighting back against MSI’m back home from hospital and reunited with my sofa after my second course of Campath.

Having a combination of steroids and Campath over three days has left me exhausted but with a brain that refuses to sleep, so I’m not only a vampire with the continuing heat we’re having, but a shuffling, glazed-eyed zombie to boot.

What makes it all worth it though is that I have gone from having relapse after relapse to not having had a single one since my first course last summer. I still have the same symptoms, but there has been no progression – a bit like being frozen in time for a while, giving me breathing space to get my life back into some sort of order.

The hospital stay was brilliant, thanks to amazing staff, superb care and friendly fellow-inmates. One brave patient a few beds down from me let me test drive her swish mobility scooter one evening. Making sure I had the dial set to ‘tortoise’ speed rather than ‘hare’, I trundled up the corridor, executed a rather neat three-point-turn and reverse parked the scooter next to her bed again to a modest round of applause. After being hooked up to an infusion for most of the day, the freedom was exhilarating.

The hospital food arrived regular as clockwork and was, well, let’s just say, designed to be eaten by people with only a few, if any, teeth left. If I’d been given a straw rather than a knife and fork, I wouldn’t have been surprised. But steroids had given me a ravenous appetite and I ate it all, then ate all the food my mum brought me in afterwards, then woke up starving in the middle of the night and rummaged around in my bedside drawer for biscuits I had stashed away.

Aside from the actual treatment, probably the best thing about the last three days was being in an environment where MS was normal, and nowhere near the most serious illness being treated. It was a relief to chat openly to other patients with no need to explain anything. I think the steroids must have given me not only an uncontrollable appetite, but a bit of a motormouth too. One patient’s regular visitor quipped, ‘blimey, it’s awfully quiet in here when that Scottish girl reads her book…..’

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Feb 11 2013
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Work and Studying

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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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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