Monthly Archives: December 2015

Dec 11 2015
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Symptoms and Treatment

Give and Take

backflipIf I could do backflips and turn cartwheels, I would.

For the first time in over four years, I have zero nerve pain in my legs. It’s nothing short of a miracle.

Yesterday, after consultation with my MS nurse and GP, I doubled my dose of Pregabalin. Within hours my legs felt, well, normal. I prodded them, stood up, sat down, walked across the room.

Ah. Of course. As with anything MS-related, it gives with one hand and takes with the other. Sure, I could feel my legs, but my balance was shot. I staggered around the kitchen, unaware The Teenager had snuck up behind me for a fridge-rummage.

‘Wha’s up with you, muv?’

‘S’alrigh’. Meds. Strange.’

‘You’re talking funny.’

‘Yar.’

‘Can I have a tenner for the cinema tomorrow?’

‘Erm, yesh.’

I was slurring my words. My head was spinning and I felt drugged. The Teenager found the last yoghurt I’d been hiding behind the jam and wandered off, tutting.

I flopped onto the sofa, polished off the chocolate Buttons and tried to think. Pregabalin is also prescribed for Generalised Anxiety Disorder as well as neuropathic pain, so I guess that’s where the drugged, cotton-wool-brain feeling came from. It can also affect balance and speech. Excellent.

I weighed up the pros and cons. The nerve pain is manageable during the day, excruciating at night. I’ve spent hours whimpering on the sofa in agony, unable to concentrate on anything. Whole evenings have been wasted. Could I swap this for a spaced-out feeling? Would I trip more than usual?

I’m going to give it a go.

The pain in my legs has defined my life too much and is a constant MS-memento. Unfortunately I still have the numbness in my feet, so the foot-drop is here to stay and sometimes I can’t feel my feet at all, although the pavements are there to remind me as I trip over yet again.

So for now, I will ricochet around the house, falling over the rugs and the cat, but I won’t mind so much as my head will be floating around somewhere else. I haven’t been outside yet – I’m about to get ready to take The Teenager to town for lunch.

Should be interesting?

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Dec 06 2015
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The Teenager

The Teenager Gives Me Nightmares

festivalOne morning last week, I was leisurely sipping on my bowl-sized coffee cup, contemplating another thrilling day at work.

All was well with the world. Sort of.

Until.

”Mum, mum, mum, MUM, MUM, MUUUUUUUUUUUUM’.

 

The Teenager tornadoed into the kitchen, waving his mobile.

‘Huh?’

‘You know you, like, love me, you know I’m your amazing, like, adoring son, and you want the best for me and you want to make me happy and I would be really, really happy if you …’

I put my coffee cup down.

‘Huh?’

‘S’like, ah, sooooo ‘citing. Reading!’

‘Reading?’ (at last, The Teenager has inherited my love of books, the joy).

‘Yeah, no, Reading, not reading, d’uh, that’s, like, books. Reading! Can I go, can I go, can I go, can I go? Please, please, purleeeeeze?’

Ah.

That Reading.

The mud-fest music extravaganza, on a par with Glastonbury. I saw tents, mountains of beer, debauchery.

I gathered my thoughts, put down my cup and tried to look serious.

‘Well. Um. Really? We’ll see.’ (standard parent answer).

‘Nooooooooo, all my friends are going, I’m looking for a tent on Gumtree, there’s a payment instalment plan, the Chilli Peppers have confirmed, I will just, like, die, if I don’t go.’

Hmm. This was serious stuff. What could I do?

Reader, I booked his ticket. I gave him a lecture about drugs, alcohol and washing properly. I told him not to body-surf across the crowds (risk of neck injury, gah). He screen-shotted the booking page as he hovered over my shoulder and Facebooked his friends.

I pushed down my rising panic. How have we come to this? Not so long ago he was desperate to see Bob the Builder and Friends live on stage and was happy to take home a helium Bob balloon.

As he hugged me when the booking was complete, he asked me to google trolleys.

‘Huh? What for?’

‘Like, d’uh. To cart all the beer for the weekend. It’s going to be EPIC.’

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Dec 04 2015
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Symptoms and Treatment

A Grave Decision

yayIf you choose to have Alemtuzumab treatment as I did, you’ve got a one in three chance of developing Grave’s disease, a thyroid disorder.

I got the illness and yet another insert in my medical file.

It’s fine – when I was rapidly losing weight and feeling like I could take on the world with the excess energy I had, it was sublime.

The severe cartoon-like heart palpitations were another matter however, and were sadly followed with beta-blockers to bring me back to earth with a thud.

Since then, I’ve been on varying doses of thyroid meds to calibrate me back to normal. Up a little, down a little.

I had a consultation with an empathic and lovely endocrinologist today who fortunately has a great insight into Alemtuzumab-induced Grave’s Disease.

I’m to stay on the meds for another six months, but the likelihood is I will have to choose between losing my thyroid or becoming radioactive (for a week).

Hmm. I googled, and wish I hadn’t. One post started, ‘so, you’ve elected to have your throat cut – are you aware of the risks?’

I met The Boss for Emergency Talks tonight (long, sorry work saga) and explained my dilemma.

I took a sip of wine and said, ‘and I’ve looked in to it, you know, if I get the thyroid taken out, I could, like, lose my ability to … shout.’

‘Can you go private? I’ll pay.’

Charming.

I asked him how he was, what with his broken arm, dodgy knee and headaches.

That obviously reminded him and I waited as he popped out a few pills from their blister packs.

‘Well ..’

‘Yes?’

‘You know my dodgy knee?’

‘How can I forget, Boss?’

‘Erm, well, the doctor thinks its, well, um …’

‘What?’

‘Gout’.

Ah.

‘Isn’t that what older people get?’

If looks could kill …

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Dec 02 2015
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Emotions

Pre-Relapse Stress Syndrome

worryAnyone else have Pre-Relapse Stress Syndrome?

After a rocky road back to some sense of recovery following my third course of Alemtuzumab in September, I am once more mired in my usual emotional mode – worrying about when the next MS relapse will strike.

Considering my last relapse began next to the hot-dog-and-fries stand in Ikea, I have reason to worry.

One minute I was holding a well-thumbed Ikea catalogue in one hand and a hot-dog in the other when splat, I was catapulted into outer MS space, floating around, my legs turned to jelly, my brain to mush.

I dropped the catalogue, but managed to hold on to the hot dog as I tried to tell my mum something was very, very wrong and it had nothing to do with the ketchup pump being out of order.

I don’t know why I was so surprised. I’ve had relapses start in random places before – walking up a garden path, sitting in a cafe eating a slice of carrot cake, in the middle of a book shop.

And there’s where the stress lies; it’s the Not Knowing. You can’t make a contingency plan. It’s a bit like having an MS UFO permanently hovering around just waiting to zap you up, mess around with you and spit you back out again.

I try to get on with normal life – my usual routine provides the solid framework I cling to. If there’s something I begin to struggle with, I’m suddenly alert. Dropped a cup? Poured boiling water over my hand? Walked into a wall? (hello again).

It’s not a great way to live, but it brings me back to mindfulness I wrote about in my last blog post – taking and experiencing life as it comes. Not projecting forward, just remaining in the moment. Om.

It’s definitely harder than it sounds. The slightest thing and I’m panicking. The relief when an episode comes to nothing is immense.

As it goes, I haven’t been back to Ikea since February. The trauma is still raw.

But. I could really, really do with ordering a family-sized hot-dog meal and eating it all by myself.

I blame the thyroid meds.

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