Tag Archives: Campath

Perception Is Everything …

wombleHaving worked the entire bank holiday weekend, I’m shattered and filled to the brim with bricks/wood/steel beam measurements.

Not the best position with an MS-brain like mine.

During this relapse, The Boss has been picking me up and dropping me off for work as my legs go a bit wonky and my head is somewhere in the clouds.

Lovely. Not only do I save petrol, I also cleverly factor in Gumtree pick-ups, such as yesterday;

‘Um. Boss. Y’know years ago we did that job in that street opposite that car place?’

‘Oh, yeah? That was ages ago?’

‘Yeah, should we drive past? See if they did that thing we mentioned?’

He finally twigs. I come clean.

‘S’was on Gumtree. Same road. Free plant pots. Silly not to really?’

And so it was, I picked up loads of free plant pots  on my way home yesterday. Excellent. I had used my powers of innate perception.

I hate my routine at the moment – work, home, work, home. With a relapse, there’s no space left for anything remotely meaningful.

Except random free offers of plant pots. I spent a happy half hour scooping earth I’d bought two years ago into a free pot. There was a worm in every handful. But I was kind of happy.

Perception. I could look at it one way:

Tragic divorced single parent with an incurable neurological illness, nudging late early 40’s.

Or:

Exuberant, vibrant, independent 43 year old parent of an awesome Teenager, with an abundance of spirit … and MS’.

I mean me; I’m talking about the same person.

And that’s why I’m trying to re-frame my life – if I see myself one way, people react. The other way, people react. So, maybe I should shove all my sad-person preconceptions to one side and big myself up for once;

‘Fat MS womble, taking on the world?’

I’m embracing the F-Word at long last – Campath-Induced Grave’s Disease be damned …

p.s. this post derives from a random conversation with The Boss about the remote possibility of me venturing in to the dating world again …

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Slapped Around The Face With A Prawn Sandwich …

prawnI saw my wonderful MS nurse today.

We discussed my relapse (which started 18th February – I write everything down; dodgy MS memory). It’s still rumbling along and the symptoms include but are not limited to:

  • Out-of-proportion MS fatigue
  • Walking round in circles
  • Falling over
  • Numbness, tingling, massive increase in nerve pain
  • Problems with hands
  • Problems with walking
  • Slurred speech

And so on. It was incredibly therapeutic to go through them all, linking the dots, feeling that what I’m in the middle of experiencing is … normal.

If I was asked to describe how this particular relapse feels, I would say it feels exactly like being slapped around the face with a prawn sandwich. Repeatedly. You kind of know what to expect at first, and if it was a posh sandwich, the bread would be firm and the little embedded seeds would annoy you. Then the spinach leaves would fall out and finally the spiny bits of the prawns would really annoy you.

It’s a subtle build up. Before you know it, you’re deep into a relapse.

I was asked how I felt, emotionally.

‘Trapped. Isolated’.

My home is my absolute focal point right now and I spend an inordinate amount of time making it look nice. I’ve constructed an Easter tree from abandoned branches, picked up leaves from my back garden (sitting on the ground, gathering them in a pile and shuffling to the next circle) and ordered everything I need online, from food to new underwear for The Teenager.

I go to work, come home, recover, sleep, go to work, come home, recover, sleep.

It’s incredibly boring. To liven things up, I Plasti-Kote’d a plant pot with black spray and spent a good few hours arranging my Sharpies in it. I have counted how many loo rolls we have left and divided it by The Teenager. I changed the bath mat. It’s that exciting.

My MS nurse asked why I hadn’t come in to the clinic at the start of the relapse and I proudly told her I was now an experienced person with MS and sort of knew what to expect. I didn’t fancy the all-night-party element of steroids and felt I could Go It Alone.

I was wrong. I should have called. The sheer relief to talk to someone who knows. I feel significantly less alone this evening and that means the world to me. It won’t change the barrage of symptoms but I know that somewhere I am cared for.

During the worst of the relapse, The Boss hooked me up to his Netflix account and I can confirm I have now seen every single episode of each of the four series of ‘Orange Is The New Black’. That’s 52 hours of telly.

I’m being sent for another MRI (yay, claustrophobia here we come), and we’ll take it from there.

To be frank, I’m a tad concerned …

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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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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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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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