Tag Archives: MS

Jun 08 2018
10 Comments
Daily Life

Bordering on The Ridiculous

So, I have my reply from the DWP, tucked into one of their notorious dung-brown envelopes.

I applied for a ‘Mandatory Reconsideration’, after their initial decision to massively decrease my lifetime Disability Living Allowance.

In a nutshell, according to them, I am a liar.

They even (and this kills me more than anything), use the word, ‘perceive’, as in, ‘You said you can’t do such and such, due to perceived pain and poor balance … yet …’

First off, I would love to know how perceived pain and poor balance feels (as opposed to the very real pain I feel, and have medication for), and secondly, how exactly is MS pain measured? Or indeed, balance?

Secondly, the decision of this mandatory assessor appears to be weighted heavily in favour of the so-called assessor who came to see me face to face in my house, and then proceeded to ignore me (but it’s ok, she was an A&E nurse and knows loads about MS).

It’s fascinating, how much she derived about living with MS, considering she was looking at her computer and checking her watch the whole time (she told us we were the ‘last of five or so and she was tired’).

What I experience is very real. No-one is on 600mg of Pregabalin a day (the limit) for nerve pain, if they don’t have nerve pain. And at my last three appointments with my neurologist, I have mentioned it doesn’t even touch the sides.

And as for balance? I have very well-documented balance issues, hence the name of my blog, which was created seven whole years ago, ‘Stumbling In Flats.’ The clue is in the name.

One of my first symptoms even before being diagnosed? Balance. Foot drop. Walking funny.

A large part of their letter concerned my work: I’m engaged, I walk, I converse. Yes, I do. But not always. There is a reason I work for my friend. There is a reason I was sacked from my last job.

It’s called Disability Discrimination and is heavily legislated, but it won’t stop firms, such as my previous employer, from sacking me the minute I had MS symptoms.

It would appear the DWP would prefer me to disengage entirely from society, merely to prove a point.

But which point/indicator on their scale would this qualify for?

NUL – Are You Dead Yet?

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Jun 03 2018
8 Comments
Daily Life

Yes, You Can

I’m really proud to have been presented with the Disability Wales Educational Achievement Award earlier this year.

Now, as their ambassador for education, I would love to see more deaf and disabled women enter higher education studies.

Without the support of a Disability Student Allowance (which you can have for every year of your studies) or the mentors in the Disability Support Team at University, I would never have finished my Masters.

Not a chance. I resigned three times, threw in the towel and stumbled away.

My brain refused to co-operate and I believed that I would never become an academic writer. I’m still not. Thankfully, times have changed and I no longer need to worry about dry, dusty sentences. I google long words and drop them in amongst my original thinking. There are gadgets and software for everything and anything. You name it, they can help.

I actually cried during one support session, my head slumped on my empty pages. I knew what I wanted to say, I just couldn’t say it. My ideas were complex but my writing basic in the extreme. And then the mentors offered a solution.

In my mind, ‘academia’ was the preserve of a particular type of person; lofty, preoccupied with serious, deep, swirly thoughts, a little scatty, prone to meandering off-topic. And they tend to tell you all the time that they don’t have a telly.

One word, Why?

As for me, I was more preoccupied with calculating the minutes it would take me to reach my sofa and remote controls (passport to the world), whether or not I had the energy to put a meal in the microwave or lamenting the ever-growing laundry basket.

Someone once told me, if you can do a degree, you can do a Masters. If you can do a Masters, you can do a PhD. It just takes longer. And this came from a very well-respected tutor.

Years ago, I chose travel over education and it was the best decision ever; I learned languages, immersed myself in different cultures and generally had an incredible time.

I felt quite comfortable with my life choice, until someone close to me called me uneducated and stupid as I didn’t have a degree. And not just once; over and over again. It became a serious bone of contention. No matter that I spoke three languages, I was somehow inferior.

It is this kind of attitude that puts people like me off education. I lived under this assumption for a good few years, feeling second-class and not worthy of a decent job. Education should be for all, but the ivory tower is alive and well.

I was lucky enough to study my degree part-time, with thanks to my then-boss, who let me study at work. But education isn’t all about degrees, awards, outcomes. It’s about immersing yourself in something completely different, but something you are passionate about.

I’m in the middle of putting together a PhD proposal. Just writing that sentence scares me silly. But, if I narrow it down, I basically have 5 years to write a novel. Not bad? And it incorporates MS, so results all round?

Scared? Yup. Can I do it? Not sure. Will I give it a go?

You betcha.

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May 27 2018
2 Comments
Symptoms and Treatment

Being Ill Is Fun and Other Myths …

The Boss has toothache.

Really, really, down-to-the-nerve toothache.

Excruciating.

We were chatting over coffee last week (with him wincing every time he took a sip, bless him) when he said something along the lines of:

‘You know what, I always thought it would be pretty cushy being ill. Lying on the sofa, binge-watching Netflix, eating sweets. But it’s nothing like I thought it would be.’

I haven’t been too well these last few weeks and it’s scared me; not being able to cook a proper meal, sleeping for so long every afternoon, shooting nerve pains. And that’s without the ever-growing hernia.

But he’s right. Before MS, probably like most workers, I thought a sick day was a euphemism for ‘duvet-day’. I’ve now learned the hard way that sick days are only fun when … you’re fairly healthy.

Real sick days are just that, sick days. You feel dreadful. You wake up tired, knock into everything, trip downstairs, and it’s all downhill from there.

Lying on the sofa isn’t safe, fun or secure when you realise that the only person keeping the whole show on the road is … YOU. There is no one to put the bins out, feed the cat, order shopping, clean, cook.

I’ve lost count of the times I have forfeited dinner, only to starve until The Boss picks me up in the morning with some kind of breakfast waiting for me.

As the only bill-payer in my household, the pressure to recover is immense, so there are no days in bed, no recovery time. It’s a case of getting over the worst and getting back to work.

Which I do, time and time again. Take yesterday: in the van on the way to work, I told The Boss that even though my right arm was numb, I would be fine. I ignored the shooting nerve pains and the general uncomfortable sensations in my fingers.

I got through the day with my left arm. It’s what you do, without that safety net.

The Boss will get his dental treatment. I will keep on taking my medication, and for the foreseeable future, two hour afternoon sleeps will be the norm.

A healthy sick day?

Yes, please.

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May 23 2018
6 Comments
Emotions

The Best Worst Day of My Life

Six years ago on Friday 25th May, it’ll be my six year MS-versary.

Six!

It feels like yesterday. I vividly remember parking up a whole hour early, my car facing the huge hospital before me.

For some bizarre reason, I tried out a new lip-gloss as I waited, a freebie from a magazine I was probably too old for, my nerves shredded.

After an hour, I locked the car and made my way to the clinic where I flicked through a battered Argos catalogue. I was called through and in less than ten minutes I was diagnosed with a highly-active form of MS and offered two different treatments.

I left, dazed, spaced-out, stumbling, a sign of things to come. I stuffed the leaflets into my bag, sat in the car and exhaled, catching sight of that awful lip-gloss in the mirror. It truly was dreadful,  but at that point, I could’ve painted a clown face on and not worried about it.

No one wants to be diagnosed with MS, but after 10 months of endless relapses, I just needed an answer, and with that, access to vital treatment. In the interim, I was spinning around in a frightening world of anxiety and fear. My health was declining rapidly, I was confused and I was losing control of my life; partner left, sacked from work. Cat stuck by me.

In the car, I smiled. I would be treated. The medicine, no matter how brutal (and it was pretty harsh), would slow this all down. Give me some breathing space, allow me the energy to get The Teenager through High School, that he’d just started. The timing wasn’t great.

Six years on and three courses of Alemtuzumab treatment later – one more course than the usual two, thanks to a particularly active bunch of lesions – we’re still here and still doing well (or ‘calm‘, as The Teenager would say).

He’s wrapping up his first year at University and I’m doing … ok. Ish. It’s been an unimaginably steep learning curve, adapting to a life I’d imagined would be a couple of decades in the future. Slowing down, readjusting.

I sleep a lot and have the whole routine down to a tee – blanket, earplugs, zonk. I’m gone. I can quite literally say, I could sleep anywhere, anytime. And that’s before 8 hours at night.

I trip a lot. I fall over a lot. My hands are wonky and my feet don’t listen to me. And as for the nerve pain; that’s a whole different matter.

Six years on, I’m in a perpetual cycle of adapting, albeit on a downward path. Yet the more I go downwards, the more my mind struggles to stay afloat.

I push myself, then have a little nap.

I could count out my post-MS life in naps. But I would far rather count it out in successes. We’re still here, and we’re here for the long-term.

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May 15 2018
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Emotions

The Gap In The Narrative

There’s an insightful documentary on Netflix, ‘End Game’, about end-of-life care. It’s a beautifully moving film and I highly recommend it.

One of the doctors explained that ‘suffering’ is the gap we experience between how our lives were and how they are now, and this hit a real chord with me. It’s all about acceptance, right?

Although he was talking about the End Game, it was a powerful and invigorating point.

We are diagnosed, we grieve, we accept.

We gather ourselves together and get on with life, however short it may be.

It sums up what I’ve been tussling and struggling with these last six years.

Simple?

Perhaps not.

All of us who are diagnosed with an incurable and degenerative illness face loss, and it’s incremental. We may not be at death’s door, but the loss is there and potent. We may have to accept our jobs are under threat, our partners lose patience, our friends drift away.

Should we accept that this has happened and if we don’t, are we still suffering? Perhaps:

  • I could have pressed my ex-employer for more compensation, but I chose not to stoop to their level.
  • I should have been worried when the government and the media started spewing out anti-disabled/benefits propaganda?

Suffering to acceptance is a very, very difficult journey for anyone to make, far less someone with an illness such as MS.

So, say we get through all that, as I hope I have. My son is fine, my MS is governable. Right, next stop, Acceptance?

I think this is only true at a micro level, which I think an illness such as MS thrives upon, for the good. MS brings us up short. We do smell the roses. We are normally young so have the chance to change our lives.

It may not be absolute acceptance, but it’s half-way there?

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