Tag Archives: multiple sclerosis

Judge, Jury and Executioner?

The day I got back home from my hernia operation, I received a letter from the Tribunal Service.

Probably the best ‘dreaded brown envelope’ I’ve ever had.

Without my knowledge, a PIP Appeals Hearing had been held in my absence and to cut a long story short, I won the case. And so ends 11 months of diabolical stress.

This would not have happened without the support of Stuart and Marie Nixon, and my MP, Anna McMorrin.

A reader of my blog put me in touch with Anna and she took up my case, expediting it through the system.

However, I could not obtain crucial evidence from my MS nurse, as the DWP had told them it would be disregarded. I have since found out GP’s and MP’s themselves are also being told that their evidence will be similarly disregarded.

This goes completely against the DWP’s own published guidelines:

From the DWP’s own PIP guidance booklet

Sending in additional supporting evidence

We want to use the widest range of evidence when we assess PIP claims to
ensure awards are made correctly and claimants are paid promptly.
It is very important that claimants provide us with any relevant evidence or
information they already have that explains how their condition affects them.

Information that will help us to assess a PIP claim
Reports about the claimant from:
• specialist nurses
• community psychiatric nurses
• social workers
• occupational therapists
• GPs
• hospital doctors
• physiotherapists
• support worker

Not only that, the DWP has admitted that Capita PIP assessors do not need expertise in medical conditions they assess.

So let me get this straight. We cannot submit medical evidence from those who know us best. And then they send us an assessor who has no real knowledge of our condition.

I call this out as blatant discrimination. It’s a guaranteed no-win situation.

Although my case has been resolved, this does not end here.

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Operation ‘Phyllis’

At last, Phyllis the Painful Hernia will be no more come an operation on Friday.

As if MS wasn’t enough to contend with, this hernia has been making my life utterly miserable.

I had a consultation at hospital two weeks ago; a kindly doctor made me lie on a couch and pushed the hernia all the way back in, before saying, ‘yup, it’s big’.

It’s a large grapefruit strapped to my stomach, a decent-sized Gwalia melon maybe. I’m tired of explaining I’m not pregnant, just fat with a hernia attached.

Anyway, at the end of the consultation I breathlessly asked when he could operate. His sad face told me everything. He explained that although my hernia was an urgent case, hernia operations were not.

Oh, ok. I’m thinking, oh well, I can wait til November. Maybe December? Not a chance. If I was lucky, maybe a year, probably more.

So, long story short, a kindly relative has paid for me to have the operation privately. I have to go for it, to keep working, as I’m struggling. Daily life is a wretched round of clasping the hernia, trying to do simple tasks and grimacing with endless pain.

I’m getting myself organised. They want to keep me in overnight, perhaps two, due to potential MS complications (fatigue probably, lol).

I’ve got some new pyjamas, two sizes up. I’ve ordered some low-carb snacks (always peckish when I’m lying around doing not very much), and I’m sorting through a stack of books to take with me.

There’s a pre-op assessment on Wednesday and I’m wondering how to ask if the surgeon (lovely man) could do a quick stomach lift at the same time. He might as well?

I’ve got ten days off work to recuperate, and I’ve lots of plans: read a whole bunch of study books, work out a timetable of research, catch up on paperwork. Unfortunately though, I’ve become addicted to ’90 Day Fiancé’ on TLC plus all the spin-offs so no doubt I’ll be watching that instead, but the intention is there.

Out of interest, I googled ‘Phyllis’, and in Greek legend a character of this name dies for love and is then transformed into an almond tree.

Spooky. I love almonds.

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Just Go For It …

A small film crew is visiting my even smaller cottage on Sunday, to create a short film of my life with MS.

I had great chats with both the producer and creative director this week, working out the best angles and what to focus on.

Here’s what went through my mind:

Best angles – will there be a make-up artist?

Can I be contoured and strobed to slim my pudgy face down?

Will there be a generous amount of Photoshop in the final editing?

My cottage is dark (yay), almost like being candle-lit. Result. Then I found out they’ll be bringing super-strong lighting. Meh.

Focus – we chatted about my life with MS, what inspires me, what motivates me. Writing seems to be the strong theme – in fact, it seems as if, through my blog, I am writing my way through MS?

All this got me thinking. They will film hours of footage, to be reduced to a few minutes. What do I want to convey? What is important?

For me, the beauty of writing is that I can make mistakes. I can delete, add, rewrite. Perfect for MS; I’m the one in control, even if my dodgy typing fingers have other ideas.

However, I’m understandably anxious as I’m probably the least photogenic person on the entire planet and I have a slight lisp. Plus a Scottish accent. And the pudgy face. Hair up or down? I haven’t been to the hairdresser since January.

Despite all the negatives, I said yes.

What does it matter? I may carry a little more weight (ok, a lot, but I’m working on it). I may have a pudgy face (perhaps they can film me from the nose up?). I may lisp, but that’s me.

Ultimately, I think I have a lot to say, and a lot to talk about. Sure, MS was a wrecking-ball, but we rebuilt and I think this will shine through.

You heard it here first, but we also have The Teenager on record, agreeing to be filmed. He might not wake up until 1pm, but he’ll be there. After all, he is the main focus and the reason I get up every day and carry on.

Do you think they’ll send a catering van?

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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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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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