Tag Archives: multiple sclerosis

Mar 10 2016
12 Comments
My Ramblings

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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Mar 06 2016
10 Comments
Symptoms and Treatment

Eyes Wide Open

googlyNow, this is strange.

Since MS, I’m quite used to falling asleep at the drop of a hat, dozing off mid-conversation and eyeing up anything remotely comfortable – in any location – as a possible bed.

If I’m in a home-furnishings shop I’ll prod and pummel cushions, checking for sleep-ability. Too small, too hard, too soft. Too … not right.

But until now, I’ve never fallen asleep sitting up.

It’s a recent development and quite bizarre. The first time it happened, I was flicking through How to Write a Killer Novel in Ten Days, studiously highlighting important points (I may as well have highlighted the entire book).

Suddenly, my eyes went ‘all googly’ (technical term). They rolled around my head. I fought back, urging myself to wake up. The googly eyes continued and I dozed off, but was still able to hear everything around me. Very odd and ever so slightly terrifying.

I knew I was aware of my surroundings as I could hear The Teenager thundering down the stairs and snapping his fingers in front of my face, yelling, ‘Aaaaaand, you’re back in the room. Can I have some toast?’

It was exactly like being hypnotised, but being hypnotised for no good reason, such as creating an aversion to crisps or having an inexplicable hatred of Kinder chocolate.

The second time it happened was last night. I was watching a very interesting programme on catch-up and was just getting to the good-bit, the unveiling of the villain, when, blam, googly-eyes started up again. I shook my head, snapped it back. To no avail. Boom, I was out for the count.

I was only revived when The Teenager shook my shoulder and told me it was past my bedtime and there was no milk in the house. Unfortunately, the side-effect of googly-eyes is a complete inability to walk in a straight line, such is the strength of the induced sleep. So I staggered around the kitchen and living room, turning off lights, replenishing the cat’s crunchy food bowl, filling the kettle, then weaved my way to bed, bidding goodnight to The Teenager and his seventeen school friends who were playing online with him.

I lay in bed, pondering this new symptom. I told myself to stay calm. It could pass. It may not. So, I can sleep anywhere if I lie down and now if I sit up.

What happens if I can sleep standing up?

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Mar 04 2016
2 Comments
Emotions

The MS Muse …

WriterAfter a very rocky start to 2016, life is slowly becoming more settled.

Sadly, MS hasn’t.

Perhaps it’s the stress of everything that has happened so far this year. And what a year.

Yet, life continues and I’m absorbing the same-old challenges MS insists on chucking in my path, like some super-charged Easter Bunny with a basketful of chocolate eggs: the slower than expected recovery from the flu, the mental fog, the tiredness (I now fall asleep sitting up, gah) and the usual increase in nerve pain.

Anyway, I plan to funnel this bounty of symptoms into my latest challenge – writing 4,000 – 6,000 words of my novel for my Masters. In six weeks.

Er. What novel?

Despite all the turmoil of the last two months – very ill relative, family dramas and ridiculous politics – I’ve at least attended my tutorials. I mean, I was there. But I appear to have taken nothing in. Thank goodness I have a scribe and I’m fascinated by the notes he sends me. Did we really discuss that? Did I actually make that terribly pretentious point?

Yup.

I’m panicking. A novel. Ok, not a whole novel, but the makings of one. Erm. Must dig out my fingerless gloves and turn the heating down. Exist on eggs boiled in saucepans of soup. Could be the makings of a new diet?

In between all this, The Teenager is interrupting my feeble efforts. He swoops downstairs, randomly flies his fingers across a few keys on my computer and sings along to Oasis hits. I mean, really? And … Stevie Wonder’s ‘Sir Duke’.

This isn’t really helping. Neither is MS. So I will call upon the MS Muse: when the worst has already happened, how bad can it be?

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Feb 24 2016
12 Comments
Emotions

What Gives?

escape2016 has been a cruel year.

A seriously ill relative.

Three health scares, one after the other, including debilitating flu.

Too much unexpected time off work, so less money coming in.

And MS is playing up.

All in all, when I raised my solitary glass of champagne as the last dregs of 2015 drained away, I could never have foreseen just how much my world would change only a few short weeks later.

Back in 2012, when I was first diagnosed with MS, I had one aim – to ensure The Teenager had as happy a life as possible, despite everything. And I’ve succeeded (ish), until now.

I’m rushing around, working, studying, catching up with Ill Relative Business. I’ve cancelled book club, haven’t been out with friends for three months and I can’t remember the last time I did something just for fun.

I’m months behind in my Uni work – my Next Great Novel is on hold. I pray I can carve out some time to catch up. I’m floundering.

So, what gives? What can I let go of?

I look a mess. My hair is straggly and un-cut. I veer from over-eating to existing on adrenalin and Lucozade. My plans to create a Scandinavian-style capsule wardrobe have been shelved. There’s mould in the bathroom and I just can’t be bothered to sort it out.

We all have to cope with unexpected scenarios and juggle a stupid amount of balls in the air. Behind it all, MS looms large. My foot drop is back with a vengeance and my memory seems to be shot to pieces. I can barely remember what week we’re in – in short, normal life is on hold.

But – I’m trying. Even the simple stuff like keeping on top of the laundry is keeping me sane. If I can meal plan a few days in advance, it’s a result. And if I can get to work and put in a full day (although my nickname’s ‘Half-Shift’), it’s all good.

Yet in the back of my mind, I fear the relapse. I fought back through a horrendous bout of the ‘flu, but a relapse is different. It will pin me down and not let go. And what do I do then?

Despite it all, I am trying to remember to look on the bright side of life. There’s daffodils for sale, the sun is shining and I am still going strong-ish.

I’ll get there. Won’t I?

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Feb 19 2016
14 Comments
My Ramblings

MS – The Interview

forgiveMS is fairly busy these days – 100,00 of us to pester in the UK alone and millions across the world.

So it was fortuitous that it could take time out from a hectic schedule to settle down for a cosy chat:

MS: How’s things? Bad, I hope? Any more nerve pain?

Me: Funny you should say that, but yes. Don’t you ever give up?

MS: Short answer: No.

Me: Long answer?

MS: Well (long pause). It’s interesting, don’t you think? Push you just that little bit more?

Me: Really?

MS: I’ve always said – and no word of a lie – you have to be tough to live with MS. I have, haven’t I?

Me: Erm, yes?

MS: So. The way I see it, I’m doing you a favour? So, it’s bad, it’s sad, it’s painful, it’s isolating. And?

Me: What do you expect me to say? Thank you?

MS: Actually, yes. Whoah, stay seated and put that vase down. Listen. If I’m honest, it’s fun – all that freaky tiredness, making you walk funny, seeing you drop stuff. It makes me laugh. And?

Me: And what?

MS: Well. Let me think. You were diagnosed in – hang on – 2012? Yes?

Me: Yup.

MS: And what’s happened since then? Still with that bullying boss? That useless boyfriend? Still harbouring a vague notion of, and I quote, being a writer?

Me: I know what you’re doing.

MS: Good.

Me: You’ve ruined my life. I went through hell. My son was scared. I was scared. My future is uncertain.

MS: I haven’t ruined your life – you have a different job now and you love it. Your son is doing brilliantly. You’re not scared, you’re fearsome. And like anyone else on this planet, your future will always be uncertain. Deal with it.

Me: Why do you pop up so unexpectedly? Cripple me with absolute fatigue when I least expect it?

MS: Like I said, it’s fun.

Me: That’s unfair.

MS: Life is unfair. Are we done now? I’m very busy you know.

Me: I hate you.

MS: I hate you too. So we’re quits.

And with that, MS leaves.

But not quite …

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