Tag Archives: MS

Sep 02 2018
10 Comments
Emotions

Write On …

I’ve been in a bit of a tussle recently, and not only with Phyllis, the Ever-Expanding-Hernia.

My blog was born in October 2012, a dreadful time for me.

Not only was I coming to terms with a diagnosis of MS, my first Alemtuzumab treatment and a Teenager in High School, I was also being horrifically bullied in work.

I desperately needed an outlet and I had always, always wanted to write.

I reached out to the fantastic author M J Hyland (who had written a beautiful piece describing the darkness around learning to live with MS in an Observer ‘Review’ piece), and who, through many emails, urged me to find a way to get everything down, document it all.

I took her advice and my blog went live; I typed away every single day, posting blog after blog after blog.

My writing was simple, direct and to the point. I wrote about me, The Teenager and The Boss, who employed me as soon as I was sacked for having MS.

I blogged what I saw, what I experienced and what I was going through, warts and all. My aim was to show MS as it really was for me. As the only adult in a house, life with MS was frightening, terrible and daunting in equal measure.

Six years on, I’m still blogging, but in that time, and thanks to a huge amount of encouragement from you guys, I completed my Masters in Creative Writing. And The Teenager is in University.

For my Master’s dissertation, I wrote an angry piece about the realities of care work (having worked in that dismal sector) a brutal and unflinching novella laying bare the real-life experiences of ‘social care’.

Reader, I won that year’s Humanities Prize for Academic Excellence.

I took a break for a year or so. I uhhhhmed and ahhhed about taking it further. I liked my job – I enjoy it, and need the flexibility of working with my best friend, but something was nagging away.

Could I go further? The next step was a PhD. Lol.

Hmm. Lol.

Nope. I’m not a natural academic.

I don’t write academically. So, in short, no.

I had an interview recently, to teach a ten week course in Digital Media, and the first thing I told the interviewers was that I wasn’t academic. Needless to say, I didn’t get the job. But my passion was there.

I had the most incredible feedback two days later. Sure, I was let down on the technical side of the course, but one of the points was my claim that I wasn’t academic.

So, what is academia? Is it ivory towers? Yep, that’s what I thought. Convoluted arguments? Yep. Long stripy scarves and a pile of books? Yep.

Well, no. Not always.

I’m going for it, despite my ingrained fears that I’m just not clever enough. I don’t have the right vocabulary, I can’t write paragraph-long sentences and I have no idea how to conduct myself in a tutorial.

I’ll still have to work, still run the house, be available for all The Teenager’s Uni dramas. And still cope with everything MS flings at me.

It might take a while. Perhaps a lot longer than my goal.

And for me, the great thing is, I’ll need your support throughout it – and not only that, I want you to contribute to my studies.

My dissertation will put you at the centre. The more I think about it, the more excited I get – it will be a collaborative effort.

How does that sound? Let me know …

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Aug 27 2018
2 Comments
Emotions

Glossing Over The Cracks

In the spirit of Bank Holiday DIY-not, here’s a little list explaining how what I say covers up a whole different, hidden life:

  • ‘Yeah, just a bit tired’ – I will simply wither and die if I do not immediately find somewhere, anywhere, to lie down and sleep.
  • ‘I had a really good day yesterday’ – I got through it.
  • ‘Oh, me? Loads of plans for the weekend’ – Sleep, sit on sofa, have a little think. Sleep some more.
  • ‘Your amazing meal at that great new restaurant sounds fabulous – wish I could have come with you guys, but I had a lovely meal at home’ – heated up some microwave rice, ate from packet.
  • ‘What, these? Oh, I bruise easily’ – you should see the walls.
  • ‘Whoops, butter-fingers’ – please excuse me dropping my coffee/juice/water all over your trousers.
  • ‘Wow, I can fly’ – pesky foot-drop.
  • ‘Awww, I’d love to, but I can’t’ – pretty much everything.

I could go on. And on, but I won’t bore you.

It surprises me how much I gloss over serious symptoms that impact my life at every turn.

But, ‘tomorrow is another day’.

Or, let’s see what MS throws at it?

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Aug 22 2018
4 Comments
The Teenager

Well, We Did It?

The Teenager turned nineteen yesterday.

My incredible son, who has had to cope with MS from the age of eleven.

Could there be worse timing?

MS was instantaneous for us – no warning, no real preview of the devastation to come. He went away for the weekend and when he came back (picked up by a friend as I was in hospital) everything had changed.

Suddenly he was thrust into a world where his main parent was ill.

I was the mum who had taken him to, and picked him up from nursery, primary school, breakfast club and after-school club. I was there at the sidelines for rugby and sewed badges onto swimming trunks and Beaver’s outfits. I checked over his reading books, helped him build castles from cardboard and sorted outfits for school plays.

I was ever-present and then suddenly I wasn’t. We both had to learn to live by very different rules and it wasn’t pretty. I was in and out of hospital, the Doctor’s, various clinics, alongside coping with an employment tribunal. And there he was, starting High School.

I fitted three courses of Alemtuzumab around his school holidays, specifically booked in for that reason. After my second course, I had 24 hours to get back on my feet and be there for him coming home, not easy with zero immune system.

But we muddled along, and my sofa became the ‘command centre’. I had my blanket tucked behind it and could whip it out at a moment’s notice. I jotted down important points, dates, friend’s names, anything I could to keep up to date with everything that was going on.

For both of us the most difficult symptom was the fatigue. I always tried my hardest to stay awake until his bedtime and a little bit extra, to appear, ‘normal’. Now he is back home for the summer Uni break and goes out for the evening, he says, ‘you can go to bed at whatever time, I’m out.’ And a little bit of me dies inside. I know that he knows that I know.

MS has been a terrible learning curve for both of us, but we got through it. I had friends I could confide in, ask for help from. The imperative was to give The Teenager as normal an upbringing as possible. It didn’t always work out that way and I will always regret that.

Yet now, here he is, a super-confidant young man.

In my blogs I normally whinge about The Teenager (as you do), but today I’m going to say how proud I am of him. He made it easy. His inner strength saw him through the worst.

I’m impressed at his resolute attitude and his sheer enthusiasm for life. In short, I love him to pieces.

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Aug 20 2018
12 Comments
Emotions

12 Minutes …

For many of us going through the DLA to PIP process, it’s a devastating slide into everything we never wanted to face.

What can’t you do. And why?

After years of muddling through, re-adapting, making concessions for MS, we have to admit our endless ‘shortcomings’. Our failings.

We realise, sometimes with a huge thud, just what we can’t do. I plunged into a deep depression, because I actually thought I was doing ok, bar walking into walls and falling asleep at the slightest opportunity.

My forms took weeks to fill in. Painstaking. Personal, hideously personal. Numerous extra pages of ‘Cont. Info’ were included.

48 pages in all. Basically, my entire life in one document.

As a birthday present last week, a huge pile of tribunal papers arrived along with cards and flowers. Nice touch.

Buried in amongst over a hundred pages, I discovered that my form had a ‘considered/writing up time’ of 12 minutes.

I don’t know about you, but that’s pretty impressive. To read a compressed life with MS, all 48 pages, plus consider them and write a response in 12 minutes is speedy by anyone’s standard. Bearing in mind it’s not a new claim, but a transition from a lifetime award for DLA.

The result?

A face-to-face consideration was required. Which happened – apparently – although neither me nor my witness recognise the meeting she refers to. And this ‘health care professional’ appears to have the upper hand in my forthcoming tribunal.

Her ‘evidence’ is the ‘truth’. She was here, in my house, for 50 minutes in total. That includes losing her way (my mum directed her on the phone), coming in, setting up her laptop, talking to me (without looking at me), packing up and leaving.

It appears my entire tribunal rests upon her ‘clinical’ finding and ‘observations’.

I’m impressed.

To destroy someone’s life in 50 minutes is bad enough, but the lead-in took 12.

I am that insignificant. All my pain, my symptoms, my life being turned on its head. Not only that, the end of my planned future, being sacked from work, the endless relapses, the invasive treatments I’ve had. Not to mention their side-effects (hello, Fatty-Puff-Me).

As if that wasn’t bad enough, the person who knows me and my MS probably better than most, my wonderful MS nurse, cannot write a statement for the tribunal. Aside from the logistical nightmare that this would cause for the under-funded department, they have been ‘told’ by the DWP that their evidence is ‘meaningless’ and ‘patient-directed’ so therefore inadmissible.

So I face a tribunal based almost solely upon evidence of someone who does not know me, triggered by someone in an office who does not know me.

Ok.

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Aug 14 2018
2 Comments
Emotions

Grand Theft Auto (Immune)

Sometimes, life with MS feels just like that pesky game – the bane of my life when The Teenager played it for hours on end – sitting at the wheel of a very fast car, out of control, driving around with no regard for anyone else.

MS is such an all-consuming illness, affecting every area of our lives.

Six years after being diagnosed, I still feel as if I am shaking the branches of a tree, seeing what falls out. What have I forgotten to deal with?

Serious illnesses are often portrayed as ‘monsters’, ‘the demon’,  an ‘enemy’, something external, something to be conquered. If you’re ‘lucky’, you may be in the clear after five years.

But what happens when the illness is within us? And will last a lifetime? Our very own immune system misreading their specific directions, wearing down, and ultimately attacking us?

Welcome to the wonderful world with MS, where not only do you lose friends, perhaps your job, or your partner, but also your own body has decided to attack you?

It’s a lot to deal with, and it’s personal.

So, perhaps you can deal with being sacked for having MS, however unfair it is. You can mourn the loss of a partner who couldn’t face an unpredictable future. You can talk sensitively with your son, explaining everything in gentle terms.

I won’t die, like your grandfather. I had great treatment. I’m trucking on (my alternative to the hideous ‘fighting’) with MS. I’m still working, I’m still here. I’m even still studying. It’s all fine.

Yet that kernal of auto-immune is always present. How best to prevent or delay this? Massive doses of Vitamin D? Munch on almonds every day? Yoghurt?

A restrictive diet, full of courgettes and not much else? Pasting a smile on every single day, and blessing it for allowing me another day where I can carry on with life, however limited?

Or. The alternative. Questioning everything and accepting nothing. Pushing myself to the absolute limit, to prove a point.

When this illness is within us, where do we go to escape?

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