Author Archives: stumbling in flats

Nolite Te Bastardes Carborundorum

To appeal or not to appeal?

That is the question.

I am tired. Utterly exhausted.

I first got the DLA to PIP forms back in October last year. We’ll soon be in July, and my Mandatory Reconsideration request was turned down, as expected. Over 80% are.

We’re talking almost ten months, to complete one ‘award’. And I’ll be reviewed again in three years.

After their initial assessment, I have been awarded the daily living needs, standard rate. In turn, this allows me to access the disability rates of both Working Tax Credit and Housing Benefit.

If I go to an appeal, there is every chance that could be reduced, and I would lose that access to the other benefits. And then I would be facing homelessness. Despite working.

It’s a gamble, and a huge one.

There’s two ways of thinking. The first, outlined above: take what I’ve been given, live with it and wait to be reassessed in three years, when no doubt my MS will be worse and at the very least I’ll have a ‘proper’ mental health diagnosis. Which annoys me as I’ve been proactive by seeing a counsellor for years, yet to the DWP, it is meaningless.

The second way is to apply for an appeal and hope that the panel will understand the intrinsic and very complicated nature of MS.

The new 20 metre rule makes matters even more difficult. It used to be 50 metres and it’s a cause being championed by the MS Society right now.

I would invite anyone from the DWP to my house from around 2pm onwards, to witness my struggles. The evenings I don’t cook. The evenings I spend lying on the sofa. The evenings when the nerve pain is beyond comprehension, despite being on 600mg of nerve pain medication a day, the highest sanctioned for MS. Where to go from here?

For me, the sticking point is the lies. Fair play, if the assessor saw me on a ‘good day’, I could understand her comments, which have been faithfully regurgitated by the person looking in to my Mandatory Reconsideration (who hasn’t met me). She didn’t.

It galls, a government department, coming in to my house, sitting with me and a witness, then writing absolute lies – in fact, it is seriously messing with my mind. I was there. I know what happened.

So here I am, not knowing quite which way to go. Stay safe, yet insulted. Or fighting my corner, with every chance I could lose my house of the last 14 years.

I work. I’ve raised a teenager on my own since he was a baby and now he is in University. And I’m dealing with MS. I’ve not given up.

I think they actually want me to.

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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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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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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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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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