Monthly Archives: April 2015

Reasons To Be Cheerful?

cheerfulI’m not aiming to be flippant, but let’s look on the bright side.

Is there one to MS?

It’s up to us. I’ve established that MS is:

  • Crap
  • Forever
  • Crappily forever

So. Life with MS is crap. On a dramatic level, it took my father from me, at the age of 35. I was 4 and a half.

On a less-dramatic level, I hope I can show that life with MS is not The End.

Strangely, I have a lot to be thankful for:

  • Life is wonderful and I now live it day by day.
  • Life is unexpected.
  • Life is a learning curve.

Ok. So, I was bitterly, utterly depressed for a full two years following my diagnosis. Not helped by a toxic working environment. Or having my partner leave without a backwards glance. Or … you get my meaning.

Anyway, almost three years down the line from The Diagnosis, I have finally realised that MS is here to stay. And if it’s here to stay, then I might as well get used to it. I actually struggle to remember life pre-MS. It shook me (us) up, it rocked the foundations of our lives and it had no mercy. What it left was a tidal quake of regrets, sighs and a lot of evaluation.

So, it rocked my life, and how. I was ‘lucky’. I was not as young as my father, who left before we knew him. I was not so old as to be set in my ways. I was 37. The Teenager was just moving from 11 to 12, seismic in Teenage years. I’d had my wild, crazy years and could still bore anyone passing with my reminiscences.

Me and The Teenager have gone through it all pretty much alone. We’ve had tears, tantrums and turmoil. Now we are in GCSE year, we’re shifting back to how it should be: me nagging him, rather than him reminding me to walk carefully.

It’s been a journey, to use a hackneyed phrase. Are we through the worst? I don’t think so. But that’s another challenge, for another day.

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Zero-Hours MS?

zeroMS:  Right, I need you for at least 35 hours this week, probably more. Can’t tell you which ones just yet. Ok?

Me:   Gah. What about next week?

MS:  Don’t know yet, wait and see. Who knows? And why would I care anyway? S’MS, innit?’

MS is the health equivalent of a zero-hours contract; you will never know from one week to the next just what it has you down for. Don’t bother making plans, MS has bigger ones. It’s the not-knowing that gets to you and MS is a ruthless master.

With a zero-hours-MS contract, life cannot be planned. You’re at its mercy, plain and simple.

So you thought you’d schedule a catch-up with a friend on Tuesday? Well, think again. MS could chuck a lightening bolt of fatigue your way. Or maybe it’ll play with your legs. Or your arms. MS will have you at its beck and call.

I have two weeks off work. Lovely. On Saturday, I took The Teenager to his Teen-Fit class. Fabulous. I sat in the cafe, leafing through newspapers and trying not to get annoyed at the yummy-mummy encroaching on my space inch by inch with her bag full of felt-tips and books about potty-training.

‘Now, Zephyr, you know we don’t respond to our very natural, very understandable urges here. Let’s see. What does Jake do in the book? Yes! He sits between mummy and daddy, yada, yada, yada.’

Inexplicably, and I can’t blame Mrs Boden/potty, I was suddenly exhausted. Utterly pole-axed by fatigue. I checked the time. 20 minutes until The Teenager would sweep through the cafe doors, triumphant and radiant, chattering away about training plans and healthy proteins.

I had been awake for less than four hours. Ridiculous. Scary. I yawned all the way home, nodding in the right places, until I suddenly had to blurt out, ‘So sorry sweetie, I just have to sleep. Gah. I’m really, really sorry.’

At home, I collapsed onto the sofa, drew my blankie and the kitten around me and surrendered to MS. I woke up two hours later.

I switched my phone back on. Three texts from The Teenager:

What we havin’ for lunch?

??????? Helllloooooooo? Lunch?

Starvin’. Wastin’ away 🙁 ‘

I texted back, fingers weary and bleary. ‘S’pesto pasta, nom nom’.

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Out of Kilter

rouletteLife is odd.

We click along in our own unique cogs, ensuring each cog fits the next one so we have  perfectly functioning life.

My cog clicks in with The Teenager’s, and my house and my work. And the kitten. And when it runs smoothly, it’s great.

The thing is, my cog seems to be out of kilter right now, jarring with each of the other ones, and it’s creating havoc.

It started small, inconspicuous, a couple of years ago. My speech went out of kilter. MS. Then my walking. MS. Then my brain. MS. The cogs clogged up, lol.

I think, ever since my diagnosis, I’ve been striving to get all these cogs working properly again. Some have, and we muddle along and it’s great. It’s a bit like oiling the daily machinery of life.

Yet, there’s one cog, possibly the largest one, which refuses to shift back into place. I feel somehow disconnected, rolling around like a ball on a roulette table, never quite finding my own space until the last minute.

I guess I haven’t quite ‘clicked’ back in to place. I used to be (I think, anyway) a great mother. I used to be a worthy colleague. I used to have  boyfriend. I used to have opportunities and possibilities.

And now? I’m that little ball, trundling along the wheel, trying to find out where I fit in.

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Live to Work? Work to Live?

workI was having a chat with the boss the other day over Hob Nobs and coffee.

After my exploding (and very icky) skin condition brought on by the sun and a healthy dose of Herr Uhthoff, he seemed quite surprised at my eagerness to return to work.

My arms are still covered in the rash despite steroids, ice packs and much lamenting.

Thinking about it, I was surprised too. I said to him, ‘isn’t it weird that I know I’m going to feel rotten again coming to work, but I still want to? Does that make me strange?’

I guess it’s something all of us with MS who work will face at some point. It’s 50/50. In work, I know I’ll be tired, I know I’ll trip over, I know I’ll garble my words and flare up in the sun, but I still do  it. Why?

Perhaps because the alternative is too frightening to contemplate.

For me, it would be all too easy to make MS into a full-time job. I’ve been there, done that, way back in the bad old days. Hospital appointments, blood tests, a fatigue management course, support groups. They all take up time. Fitting them all around a job, a Teenager, a kitten and just running the house all takes its toll.

But at the moment, work is my personal statement and a yah-boo-sucks to MS – it’s something I’m clinging on to. It gives me routine and pride in myself, and I’m planning to do it as long as possible. Of course, if I had a hunky, tall, chiselled-jawed, sensitive and caring significant other who earned shed-loads in hedge-funds, I may think differently. But I’m the only source of income in our little cottage – The Teenager needs pizza and the kitten needs her Dreamies.

So, in reality, I will still stumble out of bed and get ready for work. Some days I might want to crawl back under the duvet and hide. Believe me, it’s very, very tempting. But there’s always Hob Nobs …

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Things That Go Bump In The Night

rashThe boss has had a lot of fun this week, pointing at me, saying ‘ewwwww’ and ‘commiserating’.

Not the foot-drop, the fatigue, the red face or dropping my buttie. Nope, something spectacular and brand new.

I have broken out in a humungous rash of blisters, all over my arms and neck. And ears. Ears! I now have Spock ears.

For some bizarre reason, unknown to MS or the thyroid problems, I have erupted in icky, hot, itchy blisters. Even The Teenager is impressed, which takes some doing.

One GP appointment later, I am back on a course of steroids (meh), plus steroid cream, plus anti-histamines. In the back of my mind, I’m already calculating how much energy these tiny innocuous tablets of Prednisnolone will give me – skirting boards? Spice cupboard? Dusting?

I look awful. The boss likens me to a post-apocalyptic zombie. The blisters itch and burn. I slather steroid cream on them and pull  my sleeves down in shops.

I was back at the doctor’s today, where he posed me in several ways, taking great shots of the rash to send off to a skin expert. Then it was off to the endocrinologist for a follow-up appointment as my thyroid has gone haywire since Alemtuzumab. To be fair, I knew all about the risks and was more than willing to sign up. It just so happens I was the one in three.

Anyway, the endocrinologist told me that my thyroid was going crazy again. In the back of my mind I’m thinking, ‘hmm, weight loss?’. ‘Yes please’.

The upshot is, I have to let them know when I feel a kind of manic energy again, with palpitations. And tremors.

The joy. On the one hand, the slump of MS combined with the up of thyroid. It’s making me kind of confused.

Up? Down?

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