Tag Archives: Campath

Jul 22 2016
18 Comments
Daily Life

Missing. Inaction …

inactionWhoah.

This relapse (spike in symptoms/exacerbation/whatevs) has drained me.

After falling face-first into some gravel, things have progressed steadily downhill.

Plates have been flying, I’ve become intimately acquainted with every wall in my house – and discovered every sneaky cobweb – and to top  it all, vertigo descended yesterday and has been plaguing me ever since.

These last two weeks have been an exercise in containment – getting away with as little as possible to keep up the facade that I’m ‘doing OK’.

I’ve cancelled meeting up with friends. I have a birthday present to deliver that’s now three weeks overdue. I won’t be taking guitar lessons for the foreseeable (long story). Life, for the moment, consists of a need-to-do basis.

I had an initial meeting with my dissertation tutor and I agreed to hand in 7,500 words of a novel by mid-September. Lol. I’ve written just over 100. To be fair, they are excellent words and it’s just a shame there’s not more of them.

I’m becoming a little fed up of lying on my sofa after work with a Dulux paint chart, eyeing up the walls, just to pass the time of day. I’ve bought a tonne of gossip magazines, caught up on my Sky Planner and watched a wide range of subtitled films. My head aches.

I hate being forced to do the minimum; I am a doer, not a wait-er. I would rather drag myself to work than lie in bed. However, I might just be made to do that very thing, and fairly soon. The endocrinologists agreed today that after two years of yo-yo medicines, I will have an operation to remove my thyroid, as I developed Grave’s disease, a 1-in-3 chance of having Alemtuzumab treatment.

It was a chance worth taking, but the logistics will take a little working-out. Two weeks off work, unable to move my head and the possibility of a husky voice; the last one seems a fairly benign symptom though. Mariella Frostrup?

Anyway, as always, life has to go on and I am co-ordinating from The Sofa HQ. I watch the hours passing on my clock. I go to work, get home, collapse, go to sleep, get up and do it all again. Why? I don’t have a choice.

Today, I met a new endocrinologist. He was reading through my file as he ushered me into the non-soundproof clinic room.

He said to me, ‘Wow, for someone with MS, you do a lot, don’t you?’

‘Yes’, I answered.

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Dec 31 2015
32 Comments
Emotions

You Do Not Have To Be Alone With MS

aloneOn the cusp of 2016, this is a post to thank everyone for their wonderful support for me and my blog over the last three years.

You’ve watched me grow from being bullied and sacked simply for having MS, changing career, coping with three courses of Campath, going back to university and most importantly, bringing up The Teenager despite MS.

 

MS can be a lonely, frightening and isolating illness.

It doesn’t have to be.

If you are reading this and you are feeling alone, please reach out. There are fantastic Facebook groups, tweeps on Twitter and blogs you can connect with. It can be a relief to be amongst people who just … understand.

Whether it’s making sense of foot-drop, cog fog, wibbles and wobbles, there’s a lot of us who know exactly what you’re talking about.

Personally, I don’t know where I would have ended up without the help and encouragement I’ve had from other people – my blog has been a lifeline. Every single comment has helped and I can’t begin to thank you all enough.

My wish for 2016?

I don’t want anyone with MS to suffer in silence.

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Oct 28 2015
6 Comments
Symptoms and Treatment

Mind The Gap

get well soonSeven weeks post-third course of Campath (Alemtuzumab) and things were looking up.

If you discounted the cold sores, the bonkers fatigue and the two-week long head cold I just couldn’t shift, things were absolutely fine.

I’m back in work (although naturally The Boss would disagree), and I’m back in Uni for my second year of the Master’s.

Mind you, I’m still wrestling with the experimental writing module – my mind whirls off into weird and wonderful stories ( … this is a dot. A lovely dot. A dot that wanted to be a comma, blah blah) rather than concentrating on Virginia Woolf and her pals.

Then disaster struck.

First, The Boss was fiddling with his ladders on the roof of his van last week, slipped on some rain and fell over, breaking his right arm pretty spectacularly. Cue a plaster cast, a very, very sad face and the realisation that, as a building company, we had to come up with a plan and fast.

Second, just as I was holding a drainage pipe in place, I was whacked over the head by the most overwhelming MS super-charged cricket bat that I felt physically sick. I staggered to a pile of insulation sheets and collapsed in a heap.

I panicked. It couldn’t be a relapse but my speech was wonky, my balance was shot and my head was floating somewhere around in the stratosphere.

I left work early, holding back the vertigo and nausea and somehow got home, wondering how best to prepare for the Uni lecture that evening. Answer: not much. Just getting there would be an achievement.

The minute I got out the shower and had wrapped my dressing gown around myself, The Teenager pounced, holding out his laptop;

‘Mum, mum, mum, mum. Have you heard of The Ramones? Have you? Like, listen to this.’

‘Oh, very nice. Lovely dear.’

‘Yeah, great, innit? And this, there’s a weird guy dancing, look.’

‘Oh right. Yes, that is a bit, um, odd.’

‘Hang on, listen to this song, really funny and can I have some money for the cinema and can you drop me off a bit later? I drank all the milk, sorry.’

I have no idea what’s going on.

But I do know one thing – The Teenager wants a ‘Ramones’ t-shirt for Christmas.

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Oct 04 2015
4 Comments
Symptoms and Treatment

Sick. And Tired.

workWell, this convalescing malarky isn’t much fun.

An interminable routine of waking up and falling asleep, interspersed with hideous headaches and increased foot-drop, so much so that I had to dig out my craft glue-gun and stick the soles back on my favourite boots after tripping over one too many pavements.

University started back last week which was a welcome reprieve. I packed my file, pencil case, water bottle and emergency Pro-Plus and toddled off, careful to watch my step as the glue has been in a drawer for a couple of years.

A whole module of New and Experimental Writing. Exciting. Or so I thought. I pondered ruminated mused, ‘I can be avant-garde, I can be Left Bank and enthuse about counter-culture and the like’. I pictured myself in six months time, graciously accepting a literary prize for my ground-breaking, innovative novella in which the main character was an MRI scanner. Brilliant. Undeniably genius.

Anyway, back in the real world, I have one more week off work and plan to sleep through most of it in the desperate hope that I can bank some energy. I dipped my toe in the water yesterday and worked with The Boss just to see how I’d manage. All went well; I was on top form, as I’m pretty good in the mornings. We started off with a debrief over coffee and toast in the local cafe. My eyes glazed over after a while and he dragged me to work, bribing me with a flapjack from the bakery next door.

It was fine. Until about noon, when the foot-drop reared its ugly head. There’s a lot to trip over on a building site. There’s a lot of holes in the floor, and after my spectacular fall through a kitchen ceiling a couple of years ago (which I’m reminded of on a weekly basis), I’m pretty careful.

I yawned more and more until the boss took the hint and wrapped it up by 1pm. Bliss. I fell into my house, threw myself on the sofa and didn’t move for three hours. I’m not so sure my Back To Work Plan is, um, going to plan.

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Sep 27 2015
10 Comments
Symptoms and Treatment

How Not To Convalesce

illnessTime off to recover after Campath is a tricky thing.

Viewed in a certain light, it’s an excellent chance to slow down, take stock and make the most of the enforced sofa-rest, cushioned by a pile of books, a stash of chocolate and box sets.

In normal life however, without my very own Mr Darcy, the washing piles up, The Teenager has started his A Levels, the cat insists on bringing home an endless parade of headless mice and Ocado have emailed, imploring me to book my Christmas Delivery Slot, NOW.

In between bouts of complete and utter exhaustion, I’m battling to keep the show on the road. Plus I’m trying to think laterally and use the time off not only to rest but also to get ahead, i.e. work my way through the entire University reading list for next term.

I had all the books delivered, settled down, unwrapped a bar of Green & Black’s and prepared to be inspired and transported to wondrous new worlds.

Bad idea. I checked the syllabus. I checked the books. I emailed the tutor. ‘New and Experimental Writing’. Let’s just say, I have no idea what Gertrude Stein was taking when she wrote ‘Blood on the Dining-Room Floor’.

However, I ploughed through, ticked her off my list and moved on to the next one. Excellent. Somehow, I have moved into a Poorly Routine. I get up early when I have most energy, do something outside the house, get back by lunch then snooze through the entire afternoon. Then, I wake up, cook dinner, snuggle under my blanket again and wait for bedtime. It’s been working. For a while.

Two days ago, same routine. I got up early. Then fell on the floor.

Oh. Painful doesn’t begin to describe it. I was in agony. I could barely walk and somehow made it downstairs through a combination of swearing, clinging on to the handrail and thumping. By some bizarre coincidence, I had booked in to see the chiropractor, more for The Teenager than for me (scrums, head-locks, dodgy balls).

Long story short, my psoas muscle is in spasm. The pain goes through my pelvis and groin and out through my lower back. Walking is excruciating. According to the chiropractor, it’s all due to my sudden inactivity. Lol.

When I told my MS nurse I planned to return to work ten days after Campath, she laughed, then said, ‘no you’re not’. Ok then. Quick call to The Boss to explain the situation. His reply? ‘Didn’t notice you were off, Half-Shift. Or should that be Sick-Note?’

Charming.

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