Tag Archives: Campath

Reasons To Be Cheerful

gooddayMy last few blog posts have been somewhat dark.

I’m not quite sure why but it probably has a lot to do with being on sick leave after the Campath treatment and spending far too much time at home on my own.

It’s definitely got nothing to do with the fact that I will be turning *40* on Tuesday (gulp). Not at all. Not even a teensy bit, although I am being rather melodramatic about it – ‘that was my last ever Thursday as a 30-something’ or’ that’s the last full moon I’ll ever see in my thirties’, before reaching for another chocolate chip cookie to console myself.

So in an attempt to cheer myself up, I am compiling a little list of things that have made me smile over the last few weeks (in no particular order):

  • I’ve almost finished my last ever essay for my university course. Six long years. Nearly pulled out two years ago when my brain decided to stop working, but got there in the end. 
  • An old friend I haven’t seen for years and years got back in touch.
  • Re-discovering the joy of toast.
  • I’ve been shortlisted for the MS Society Digital Media of the Year award – chuffed beyond belief, and The Teenager is coming with me to the awards ceremony in London (if he tidies his room and promises to behave).
  • I put a whole load of grated carrot in The Teenager’s bolognese and he didn’t notice.
  • A friend in America sent me over a package filled with fabulous presents.
  • Wandering round Ikea and managing not to buy any candles for the first time ever.
  • Cutting my own fringe with dodgy MS hands. So bad, it’s good.

I was talking to someone the other day, who asked me if there were any unexpected good things about MS. Without hesitation, I found two. First, the support from other people with MS. Who knows where I would have been without it. Second, the fact that something like MS makes you scale life right down to what’s important. I appreciate everything now, however insignificant.

Life is looking up. I will soon be ready to re-launch myself into society again and I can’t wait.

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Busy Doing Nothing

nothing happenedI’ve had a very productive week doing very little except recovering from Campath.

You need to put in a lot of preparation work to do nothing. First up, food. I’ve spent hours on the computer putting together a shopping list for Ocado home delivery to save me the hassle of going to the shops.

With a brain functioning at less than zero, it was a Herculean task. I also Blame The Brain (TM) for the abundance of snacks and chocolate that found their way into my virtual basket and the lack of proper, grown-up things such as leafy green vegetables and washing up liquid.

Next, The Teenager. Unlike me, he’s had a busy week doing an awful lot and needs frequent cash injections and food (see above point). He’s also keeping me ‘entertained’ with a detailed breakdown and analysis of the upcoming football season, so I’ve had to try and concentrate as he throws in random pop quizzes to check I’ve been listening.

Then there’s the cat. She also wants feeding. On Tuesday, her Go-Cat crunchy biscuits didn’t quite fill the gap so she brought in a barely-alive bird and dropped it at my feet. I screamed, she ran away with the poor thing and proceeded to eat it, head first, outside my window, casting me triumphant glances as she munched away.

I am also not studying, not doing any housework, not getting rid of the cobwebs (18 and counting, plus two large, dead spiders spinning around, eww). I am busy lolling on my sofa, reading trashy magazines and watching trashy telly. This keeps me occupied for hours and hours, leaving no time to just do nothing. To break the monotony, I went with the boss to Ikea the other day to look at kitchens. I’ve never been one to turn down free meatballs.

I did nothing much at Ikea either but on my way through the Market Hall, I picked up a lamp I didn’t really need. Ikea does strange things to the mind. It’s virtually impossible to leave without buying anything, even if it’s just a 60p hotdog or a dustpan and brush set.

So that’s been my week. Next week I’m planning to do more of the same. It might look like I’m doing nothing but I’m rushed off my feet…

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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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Weak As A Kitten

weak as a kittenCompared to last year’s Campath infusion, I am a whole lot more tired this time around.

Mind you, ‘tired’ doesn’t even begin to describe it – that’d be a bit like saying you’re a tad sleepy when in fact you’ve been poleaxed by MS fatigue. Utterly, thoroughly, totally exhausted would be more apt. Drained of energy, flat battery, squashed, deflated.

Since I got back from hospital on Wednesday afternoon, I have wobbled unsteadily between my sofa, my bed, the fridge and microwave. Right now, these are the four cornerstones of my daily life, with regular medication punctuating the long hours in between. Alongside all my usual pills, I need to take anti-histamines four times a day for a week and anti-virals twice a day for a month. If I had the energy to jump up and down, I’d rattle.

I feel nauseous and spaced out. Thoughts float through my mind on fluffy white clouds and float back out again. The world is either moving a second too slow or a second too fast. I can’t work out which. Everything is slightly fuzzy round the edges.

I have little five-minute pockets of energy,when I raise myself from the sofa and slowly pinball around the house finding little jobs to do, just so I feel I’m doing something. Only problem is, I forget halfway through what I was meant to be doing. I stand for minutes, staring at a pair of socks in my hands. What am I supposed to do with them? Or, why am I holding an empty toilet roll?

The steroids don’t seem to have left my system quite yet either, so I wake up in the middle of the night and still have a ravenous appetite. I’m like a locust, stripping food cupboards bare. Half a packet of digestives, circa last year? Yes please. Two bits of dried apricot stuck together? Nom nom.

All this to one side though, I am thankful that at least I know I will feel better very soon, unlike a relapse when it’s anyone’s guess. There is a definite end in sight.

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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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