Tag Archives: Alemtuzumab

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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Still Waiting …

impatientNo thyroid tablets for six days now!

The weight should be dropping off!

Except, it isn’t.

I bumped into a passing acquaintance I hadn’t seen for a couple of years yesterday and we exchanged the usual, ‘how are you, so am I’.

I then waved my hands around my large body and apologised for my weight (why?). I seem to be doing that a lot over the last year or so. Embarrassment? Humiliation?

Anyway, I joked, ‘ah, pesky baby weight, lol.’

‘Aw, bless, you have a new baby?’ (I could see her mentally totting up how ancient I must be)

‘Nah, he’s 17 in August.’

‘Oh.’

I know I’m being impatient, but over the last eighteen months of thyroid tablets, I have packed on the weight. I am … massive … and I hate it. Don’t get me wrong, I never want to be skinny. I can’t quite believe I was a size 10 (ok, maybe 12) before The Teenager and I was perfectly happy with my curves and womanly figure. Right now, I’d settle for a 16.

But … this. This is unreal.

I hate mirrors. Mind you, I like mine – thank you Ikea. It’s just everyone else’s I hate. I leave the house thinking, ok, large but ok, turn to the left. Large but ok. Profile? Hmm. Then, like today, I see myself captured on one of those horrible CCTV cameras, waiting patiently to pick up a parcel at the depot. Who is that? And why did I even leave the house?

I’ve always believed it’s the person we are inside that should shine through, but try thinking that when you’re squeezing into fat jeans and a blouse that gives you a triple choc muffin top. It brings me down. I try to ease my shoulders back (not an inconsiderable task, given the size of my stomach) and sail when I walk. Glide. I will own this weight.

Nah. Doesn’t work.

I’ve never been beautiful, so it’s not an anguished cry for a lost nirvana. I just want to be me again. It’s as if my weight has galloped ahead and I don’t recognise myself. Shallow? Quite possibly? But when MS has already take so much from me, it would have been nice if it had left my metabolism alone.

Yet. In the back of my mind, in the depths of my despair, would I ever swap the treatment I had for zero thyroid problems? Not a chance. I’m not ungrateful. I’m just impatient.

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Divided We Fall?

worldI have a serious question.

There’s a lot of us across the world living with MS – some new to it, some ‘old hands’.

Do the people who have been living with MS for a good few years feel somehow separate from all those newly-diagnosed people?

It’s a personal question for me; regular readers of my blog will know that my dad died of MS complications when he was 35: he had Primary Progressive MS.

With that in mind, I didn’t hesitate to have Alemtuzumab treatment when I was diagnosed with highly-active, or rapidly-evolving MS in 2012.

Yet, when I attended MS-oriented events, there seemed to me to be a clear division between those who had benefited from the rapid advance in MS disease modifying drugs and those who had not had the opportunity to take them.

However, I have also met people younger than me with a drastically declined state of health that no amount of disease modifying drugs could halt. Where do they fit in?

Over the years since my diagnosis, I have heard from fellow MSers:

  • You don’t really know what it’s like to have MS.
  • You’ll never suffer the way I do (from a sprightly 70-year old)
  • MS? You don’t know the meaning of it – you’re cured now you have those drugs.

Is this helpful?

We do at least have something in common – the abject terror a diagnosis of MS brings. So why can’t we unite in our fight against this illness rather than comparing ourselves on a scale of 1 – 10?

Why can’t we be happy that significant advances in medication have been made, so that future MSers will enjoy an easier life? Isn’t this something to celebrate?

I will be forever grateful for the treatment I have had. It has given me back valuable years with The Teenager. And I am saddened there are not such a vast range of treatment options for those with a more progressive form of MS.

Yet, if we can unite, and stand up to MS together, no matter what hand it has dealt us, surely we are stronger?

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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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