Tag Archives: multiple sclerosis

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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Trials and Tribunals

Hmm.

What do you think would happen if you missed a DWP deadline, with no explanation?

Yep, you’d be ‘struck off’ and told to apply again, if at all.

Since first being contacted for my transition from DLA to PIP in October last year, I have hit all deadlines bar one – I was extremely ill and needed a couple of extra weeks to complete the forms.

The DWP were swiftly informed and sent out re-adjusted timelines accordingly.

Since then, I have had a decision, had a home visit, had another decision, had a mandatory reconsideration and been turned down on the points I made.

So now it’s going to a tribunal. I duly sent off the forms and had a letter back from the HM Courts & Tribunals Service. The DWP had 28 days to send a response.

That date was 3rd August. Hearing nothing, I phoned the Tribunals Service for information. I discovered the DWP has ignored them and will be sent a letter to prompt them for a response. Anyone here ever had a gentle ‘prompt’ letter with no sanctions attached?

This letter will give them an extra 14 days to respond. If they still ignore my case, a judge will decide how best to proceed.

If the DWP had responded on time, a likely tribunal would be held at the end of November this year, a full 14 months after first starting this endless, pointless paper trail. 22 weeks is the standard waiting time from lodging an appeal to it being heard.

With their non-response, it’ll probably be Christmas Eve.

To be fair, the woman I spoke to at the Tribunals Service was amazing; my story is nothing she has not heard before. Day after day she takes similar phone-calls, digging down in to the whole ‘lifetime’ award scenario for incurable illness, such as MS.

As an unexpected aside, a wonderful regular reader of my blog met my MP at a local event last week and outlined my case to her, even giving her my blog address. Long story short, I have since contacted my MP’s office and hopefully they will be taking up my fight, alongside my fantastically patient supporters who helped me fill in all the forms.

I’ve just dug out a letter from Capita about my home assessment. Clearly stated, there is the line, ‘if you fail to attend without a good reason, the decision-maker at the DWP is likely to refuse your claim’.

One rule for them ..?

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Life, Interrupted, For a Little Bit

It’s not much fun when you’re trying to get around with your insides spilling out, and I don’t mean through blogging.

This hernia is dominating everything at the moment and because of it, life is on hold. For a little bit. Hopefully.

I’m still working (in a wonky, stomach-clutching way), still running the house (just about) and still catching up with paperwork (me and the hernia get up early in the morning, best time of the day).

To most people I must look like the oldest pregnant woman they’ve ever seen, the hernia now taking on the appearance of a six-month bulge and still growing. I turn 45 the week after next and it’s getting plain embarrassing, especially when I’m accompanied by the Man Mountain, aka the very tall and muscle-rippled Teenager.

My summer wardrobe consists of jeans I can now fit, due to my low-carb eating but teamed with  big flowing tops, so that I look like a very fat, very pregnant woman who wobbles when she walks and trips over a lot. And wears tents.

Yup, MS hasn’t moved aside, in fact, it’s intensified. With the hernia situated right in the centre of my body, the neuropathic pain has increased ten-fold. I walk into walls a lot more and basically pinball around my house.

And as for the pain, I’m on the strongest painkillers my Doctor can give me and I look back wistfully at the gas and air I had when I actually was pregnant and about to give birth, never mind the epidural. Now, that would be utter bliss.

So, we muddle along, the hernia and me, the hernia (Phyllis – we’ve known each other so long now, she just has to have a name) always going first. Of course.

And it’s ever so slightly icky. I never knew anything about hernias until Phyllis took up residence and when I read up about it (thank you, Dr. Google), I was horrified. So it’s a delicate subject to bring up, especially when people ask me what it is. Eww.

I’m not seeing a consultant until the last day of August, after two urgent GP letters and a deadly committed MS nurse fighting my case. It’s anyone’s guess when the actual operation will be.

The only way I’m getting through this month before the appointment is to imagine myself without my melon-belly; I’ll be reborn, and I’m half-tempted to ask them to tummy-tuck me at the same time, seeing as they’ve kept me waiting so long, the meanies.

Plus, I’ll need to be off work for a couple of weeks, which will give me ample time to embark upon some University reading. Result.

Or binge-watch Jeremy Kyle and Homes Under the Hammer.

Probable result.

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The Unwritten Script

There are certain expectations placed upon you when you suddenly become ‘disabled’.

In my case, I was duly sacked from my job ( I was a ‘liability’), dumped by my partner (the future was too uncertain; I mean, really?) and cast into an almost unrecognisable and vicious world of battles and tribunals.

Simply because I woke up one day with a ‘health problem’.

It’s no wonder the media labels us ‘warriors’, ‘battlers’ and ‘inspirational’. We ‘fight’ (often courageously) and we ‘campaign’ (for the same rights as everyone else).

Mostly, it’s not because we want to, but because we have to.

Tick the disability box on a job application and you’re in a different world (tokenism or the bin). Finally receive a Blue Badge and you fight the public if you ‘look ok’. Tentatively start dating and you face the ‘when do I tell them’ dilemma.

So what happens when you tear up that script? If you don’t accept the DWP can understand the difficulties you face, you’ll face a tribunal. If you don’t accept the nasty stares and comments when you use a Blue Badge, you face confrontations which could spiral (it’s happened).

And not only that, you’re pushed into proving yourself, over and over again. And then told, ‘well, you can do it, so what’s your problem?’

Should you prove you can or you can’t?

I realised this today when I was in work. I was nearly fainting from Uhthoff’s – MS heat intolerance- and I pushed myself to the point of near-collapse, merely to prove a point. I paid for it, ten-fold. Five minutes of pushing led to an hour of recovery. Is it worth it?

Tradition would dictate that, as a disabled person, I should accept the gracious help of our depleted welfare state, stay at home, keep quiet and get on with disappearing. And that’s where the trouble starts.

In our hundreds of thousands, we are refusing to accept the new PIP or ESA guidelines. We are standing up to everyday discrimination – taxis refusing to take us on short journeys, trains refusing to accommodate wheelchairs, and we often make the news (courageous, battling this and that illness, the usual script).

Remember the last General Election? Those endless newspaper double-spreads about how this or that Government could affect your voting choice? Was there a disabled person in amongst them? Probably not.

In fact, I was so angered at this, I contacted the BBC and made a short film asking why not one politician addressed how 11 million disabled people in the UK could be affected. Of course, nothing changed.

And still it continues, bar a few extreme (but sadly common) media-highlighted examples. Especially if the person is famous or has a lively social-media profile.

So where do we go from here? How can we persuade the Government, and the public, that we have a voice? That we can do remarkable things, just like everyone else? That we’re not ‘special’, ‘inspiring’ or any other insipid, patronising label that can be stuck on us as a gift from above?

I’d love to hear what you think …

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The One Where We Almost Go Under

I work hard, and so does my Boss, aka Best Friend.

He employed me when no one else would and understands more about MS than anyone I know.

He knows exactly why I can sit on a staircase and nod off within three minutes, or indeed a pile of plasterboard.

He can see my brain go numb when we talk about the next phase of building work. He even picks me up every day to make my life easier, and there’s always a fresh coffee waiting for me in the van.

So when we arrived at our latest project last week and I was so bone-tired I slumped on the doorstep, I had no idea of what was to come.

After a quick catch-up chat, he opened the van; his drill is always floating around at the back somewhere. But this time it wasn’t. Weird. Searching for it, he pulled the ten sheets of plasterboard he had bought the day before to one side, as they were hiding the shelves.

They were all empty.

Every single power tool was gone. Stolen. Half the van was bare. Someone, probably several people, had emptied his van of everything they could carry. Fifteen to twenty power tools were stolen. The cost runs into thousands, having been built up over the years.

We were left with a bag of hand tools and a radio.

I don’t think I’ve ever witnessed my friend so broken. His van is precious, and without it we don’t really have a business.

So, to whoever walked or drove off with a van full of tools, neatly boxed, perfectly stacked, you have absolutely no idea what you have done.

I’m trying not to be bitter. Bad things happen. But to clear out an entire van is beyond cruel. It’s a livelihood. Several.

A few days on, our mood is still sombre but we’re managing. We’ve pulled in favours from friends in the hope that we don’t let our customers down. But every time I look in the back of the van and see the empty spaces, my stomach lurches.

It’s a massive blow but I hope we will come back from this. The timing is terrible, MS is playing up and we’re scrabbling around with one new drill (hundreds of wasted pounds) and a list of prioritised tools, a kind of shopping list. What do we need the most, right now? (I voted for a little hand-held blower, the Boss for an angle grinder, gah).

To be robbed so comprehensively is utterly breathtaking.

Sadly, at least I now have an idea of what to get The Boss as a birthday present next month …

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