Jun 15 2018
6 Comments
Daily Life

Fighting Fat, Chasing Chips …

I was ‘large’ before MS, but comfortably so, I thought.

I’m tall, and carried my weight well.

I could still browse normal stores, pick out a top or two to try on in a changing room without feeling too … fat.

Then came the nerve meds, steroids, comfort eating. MS, basically.

My weight crept up and up and up. And up some more. And then it leapt considerably and it just wasn’t funny any more.

Most of my clothes were bagged and put away in a cupboard. I shunned mirrors and didn’t recognise myself in photos. I had a teeny-tiny head on an enormous body. It wasn’t me. And if it wasn’t me, who was it?

I read all the ‘we can cure MS through diet’ books. I looked through the miracle websites; I should cut out carbs, ban sugar.

That’s all well and good, but perhaps finding the reasons for my food choices could be more important than following a trending diet plan without digging more deeply?

Unpicking those choices with a therapist over the last two years has been invaluable for me.

I’m in the middle of being diagnosed with a fairly serious mental health illness. But the incredible thing is, I’ll be diagnosed officially with it when I’m almost through the worst and heading towards needing little, if no intervention.

I’ve thought long and hard about writing this post, but it is important to me and hopefully to many other people with MS, who are also struggling with their mental health.

It’s very easy to concentrate solely on our physical symptoms, frightening enough in themselves – the nerve pain, the balance issues, the complete and utter dysfunction of our once ‘working’ bodies.

But what about our minds? Our mental health? I had so many emotional issues I didn’t feel able to discuss seven years ago when MS first started. Now, after unpicking them with my counsellor, I am able to work out patterns, understand trigger points and hopefully – fingers crossed – have a plan of action to be able to deal with the ups and downs of living with MS.

So now, I have started to cut out carbs, my go-to comfort. And sugar, my absolute go-to comfort.

I won’t lie, it’s tough, cutting my daily intake of sweetness and soothing comfort, But, by facing up to my latent demons and the ever-lurking shadows of the past, I hope to shed my carb-fest weight and reveal the real me.

Can I do it?

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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 06 2018
2 Comments
My Ramblings

Reach Down, Raise Up

MS sometimes feels like a ladder.

Six years ago, it felt like I was somewhere around the bottom, in the murky depths, desperate to get a handle on the slippery first rung towards diagnosis, treatment and, well, ‘thank goodness I now have an explanation for what the hell’s been going on for the last year‘.

I spent hours and hours on the MS Society forums, asking question after question. Patient people who had been there before answered every niggle, every question, no matter how weird it sounded.

They reached down and pulled me up and I will forever be grateful to them for their guidance and support.

Limboland is a cruel place to be; essentially, you wait there in the ‘hope’ you have another relapse and are then moved from a single episode to ‘multiple’. So, you pray to get worse, to get better, because it’s only then that you can access the treatment that will potentially stop the next relapse.

I vividly remember the elated posts from fellow ‘Limbolanders’, ‘Finally!! I’m diagnosed!’ I was envious beyond belief and confused in equal measure. How can you be so happy to have MS?

I soon found out.

Like a magic door opening with a secret code, my eventual diagnosis offered up a myriad of treatment options.

Next week I’m taking a day off work to train with the MS Society as a Support Volunteer. The focus is firmly on the social model of disability, which centres upon choice and control.

I hope to learn skills which will allow me to reach out to pre-diagnosed people and those who are newly-diagnosed; I want to learn how to offer non-directive support and take on board an individual’s unique circumstances without judgement.

I’m looking forward to the course and giving back at least a tiny bit of the support I received all those years ago. If I can ease someone’s journey into life with MS, I’ll be over the moon.

Volunteering often sounds like a massive commitment, and I will be honest as to how much time I can offer, but it could be as little as one phone-call a week, or one quick coffee. Hopefully I will be able to offer more, but if anyone is thinking about volunteering, go for it.

I’d love to meet that one particular person on the MS forums (amongst many others) who took me through, step-by-step everything I asked, with her incredible medical knowledge.

I probably never will, but the one thing she said to me is, ‘if you found help in what I have offered, do the same, when you are ready.’

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Jun 05 2018
19 Comments
Daily Life

No, You’re Not

Moving from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) was always going to be difficult, given the current climate.

Like most of us with MS, I had a lifetime DLA award.

Because, in simple terms, – MS  is a lifetime, incurable, degenerative illness – and one which we would probably all willingly give up, should a cure be found?

After filling in an interminably distressing form – which took weeks – and and after enduring a ghastly face-to-face meeting with someone who would later blatantly lie about me in her report, I submitted a mandatory reconsideration.

The odds are heavily stacked at this stage – over 80% fail.

I did.

However, should you go to appeal, the odds are in our favour; 67% of awards are overturned in favour of the defendant.

So, basically, get ready for a court case. A court case! To prove you have MS.

As if we don’t feel battered enough?

The form itself was a kind of reverse-therapy; focus upon every single tiny thing you now cannot do that you perhaps once did. In the process, write numerous essays highlighting these points in excruciating detail. Nothing is off limits.

I’m not exaggerating when I say that I was traumatised and utterly broken after filling in the form.

And then there was the rejection, and the reasons for them. Every single point seemed to be refuted as I seemed healthy and happy, dressed appropriately for the climate (I kid you not) and was able to put my fingers through my hair. Oh, and I laughed (with my witness, my mum, nervously).

Stunned.

I sent in a mandatory reconsideration, and now I have found out my claim stays the same, so my only recourse is an appeal. Which could take well over a year. And I’m to be ‘reviewed’ every three years.

It’s a legal nightmare.

What should I do?

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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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