Tag Archives: DWP

Nov 10 2017
14 Comments
Emotions

A Right Barrel Of Laughs

barrelThe DWP (Department of Work and Pensions), in reassessing whether or not I still have MS, is like a huge, malevolent vacuum cleaner.

It’s sucking the absolute joy out of everything.

I go to work under a cloud, come back under a cloud. I’m miserable, fed up and terrified about the future.

The depression rate for people with MS is three times higher than the national average. Throw in a Dickensian and brutal reassessment and I’m in no doubt it’s even higher.

I feel as if I’m teetering on a very high tightrope (note to DWP: no, I don’t do this in real life), and I can either use every bit of my self-will and inner strength to stay on that rope or simply free-fall into the abyss.

I’m trying hard to reintroduce some sense of normality into my life, plus a dash of humour. It’s incredibly difficult, especially as, freed from the routine of having a Teenager at home, I’m now able to give into the heightened fatigue, nerve pain and spasms. So I go to bed early as the darkness only makes me feel worse.

With all this in mind and the season of Goodwill to All fast approaching (haha), I’ve started a little list, where I jot down the happier and funnier side to my life at the moment.

Top of the list is of course, The Teenager. He really has taken to Uni like a duck to water and we text-chat every other day. The pride I feel in him and his achievements will never be dented by the DWP, no matter how much they try. He’s 100% ring-fenced.

Here’s my list this week:

  • When The Boss picks me up for work, he makes sure there’s a cup of coffee ready in the van. Bless him. No donuts though.
  • I went to my evening class this week, after calling in sick for the last one. Result.
  • The cat brought home a (dead) rat the other day. I’m not quite sure where the humour is in this, but I was brave enough to schlep it in to a bag and dispose of properly.
  • Speaking of the cat, I had to get her to the vets again for her Flea Bite Allergy (a real thing!). Despite the steroid injection curing her extremely quickly and giving her bags of energy, I was nevertheless disappointed to see that she didn’t have the side effect I usually have from steroids, i.e. cleaning the house.
  • The joy of discovering my next Book Club book is very short.
  • I laughed until I cried at ‘Motherland’ on the BBC. Genius.
  • Sitting in the works van a lot, I’ve managed to get through a very long book, ordered Christmas lunch for me and The Teenager and browsed Pinterest for decoration ideas I’ll probably not get round to doing, but the intention is there.

So life is a precarious balancing act right now. Pleasure is fleeting, fear is endless.

But I will keep writing my list, until I can’t. And then I’ll know I’m in trouble.

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Nov 06 2017
20 Comments
Daily Life

Weak? Yes. Strong? Oh, Yes

bossThe Boss fell asleep at 8am in a Wetherspoons pub yesterday.

It was a bit embarrassing, especially as I’d ordered a large breakfast and now couldn’t feasibly pretend we were going to share it.

So, I tucked in. Then I woke him up and offered him a piece of toast. He groaned and went back to sleep, clutching his glass of lemonade.

Bless him, The Boss had food poisoning. All the way to work he’d explained in great detail every weird and wonderful symptom he was experiencing and I tried my best to be sympathetic, but drew the line at just how many bottles of bleach he’d had to use in the loo.

I shook him awake when I’d scooped up the last of the sausage. He appeared wan and dishevelled, not helped by him not having been to a hairdressers recently. I smoothed his hair down, sent a text to our job explaining my plight and helped him back in to the van. He got home and slept all day and most of the evening.

He was stunned that he could feel so weak, literally unable to work. Well, I was on safe territory here, having been found fast asleep on a pile of plasterboard not so very long ago, and woke to find the home-owner, two electricians and a building inspector staring at me with mild bemusement.

Perhaps he now understood that fatigue is dire, but weakness is worse. The ‘walking through treacle’ analogy has never been better served. I can sometimes cope with fatigue, in a minimally interesting way, but weakness absolutely destroys me. It’s at that point that I reach absolute Dead End. Nothing happens. I lie, prostrate on my sofa, wishing I had a Magic Elf (or a dashing new boyfriend) who would load the washing machine, cook a simple dinner and soothe my fevered brow.

No such luck. I lie there, desperately wishing I could get up and … move. I pass many evenings in this state. The Teenager has witnessed me sleeping, bolt upright, eyes wide open. But I’m not there.

Today, The Boss picked me up, hollow-eyed and exhausted. I pretended to vomit, for a laugh and suggested we have some fried chicken for lunch. I fell asleep in the van at one of our jobs and woke up on the motorway. Luckily The Boss was awake.

I sent him home after he dropped me off this afternoon. I’m shattered, with a low-ish-level relapse rumbling. My right hand refuses to work properly and my balance is shot. The norm. The Boss will get better.

As for me, I’m slowly dying in the face of the DWP.

I’d choose KFC food poisoning any day …

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Nov 03 2017
8 Comments
My Ramblings

An Utterly Miserable Phonecall

miserableIt would appear the dehumanising experience of moving from DLA to PIP begins with that very first phonecall.

I received a second reminder letter in the Dreaded Brown Envelope, urging me to call up to start the whole grinding, hideous, unnecessary process.

So, this afternoon after a truly awful day in work, marred by crippling fatigue (my new nickname – ‘GrumpyPants’) , I called to say, yes, I still have MS (surprise!), and yes, it would be really helpful if I could still be allowed by The State to live on very little money.

My call was taken by someone with a semi-robotic grasp of the English language and I frequently had to ask her to repeat stuff; usually the legally-binding agreements they read out to you, followed by a threatening, ‘Do You Agree?’.

I agreed I could be prosecuted, banged up and no doubt hung, drawn and quartered, should I provide false information. Judging by my interrogator, otherwise known as a Call Handler, this may deem preferable.

I had to repeat my National Insurance number five times. A test? Probably. Every so often she would throw in the same question, such as ‘repeat your telephone number’. A test? Probably. I told her she was confusing me.

She asked if I had one of a list of illnesses, including schizophrenia, dementia, etc. I replied no, I had multiple sclerosis. She took absolutely zero notice. Another list of illnesses. Again, I replied, MS. Nothing.

I interrupted her robot speech to ask how long I would have to fill in the forms. She sighed loudly and told me four weeks from when I got my form, which may be in two weeks, but which would be date-stamped with, well, a date. What date? No answer. Confused? Yep.

She asked if I would get help filling in the form. Er, yes? Of course. Who wouldn’t? I can barely write a shopping list, far less fill out an epic and somewhat tragic story of my life with MS.

She demanded to know who would help me. I replied that some very kind people within the MS Society. Names? No. Why is this relevant?

In the end, we came to some kind of an agreement. She, on behalf of the DWP, would continue to terrorise me until I was pulverised to dust and in return I would write out every single episode of my life in which MS gets in my way, shatters my confidence and generally makes me feel less than sub-human.

Begging bowl at the ready …

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Oct 25 2017
30 Comments
Symptoms and Treatment

Thanks For The Reminder, DWP

reminderI saw my lovely neurologist last Friday for my yearly review and to check how I was after my last Alemtuzumab treatment.

I was feeling fairly well that day, having taken the previous day off work as I had an early appointment. Just as you do, when you have MS? We learn to build in ways to … manage.

So, we chatted about the appalling time I had had from February until May, and the still-lingering symptoms. We discussed my fatigue, and sadly, the medicine that could have helped enormously has been taken off the market; so I’ll have to keep on dealing with that as best I can.

I got home (in a taxi as I can’t cope with the stress of parking at the hospital), and went back to bed. At 10am. It’s what we do? I cope best by being prepared, factoring in sleep time, down time, can’t do anything time. It feels so normal now, I hardly give it a second thought.

The next day, the DWP letter  ‘inviting’ me to apply for PIP arrived on my doorstep, and everything changed.

When you know you will have to go into excruciating – and at times highly intimate – detail about every single aspect of your illness (and your life), reality smacks you right in the face.

I gloss over many of my symptoms, maybe laugh them off. They’re part of me now and I cope as best I can, and a lot of the time not very well. But I’m still here. Writing everything down is a depressing exercise in negative thinking and now I can’t help but play a running commentary in my mind.

Take yesterday: I called in sick to work. I simply could not cope with the stress of these forms. I was in a pretty bad way and shut out all contact bar this blog (and of course The Teenager, natch). I shut down and shuffled from my bed to the sofa and back again.

This morning, the commentary kicked in as soon as I woke up. Balance, dodgy hands, balance again, dropped stuff. Tripped over the cat, the rug. Attempted and abandoned a shopping list. This is my life now. But to have to catalogue and write down every single thing is horrendous. It’s now glaringly obvious to me just how much life has changed in the last six years.

My life is very, very small now. As a former proud globetrotter, for my horizons to have shrunk to my house and the passenger seat in the Boss’s van is depressing at the best of times. My life is extremely limited but I try to appreciate the beauty in simple things.

Not now. My living room window, through which I view life going on outside of my own experiences is now a window in a jail cell. My house, my safe haven, is now unsafe and at risk.

I thought I was doing the right thing, maintaining a positive attitude after two years of deep depression, still working (albeit with someone who accepts it’s completely normal for me to nod off mid-conversation). This all feels blown to pieces. Do they want me to give up? Call in Social Services? Admit I can’t cope?

Because, it’s beginning to look a lot like that.

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Oct 22 2017
28 Comments
Daily Life

Today’s Blog Is Brought To You By Letters, D, W and P

alloDWP. Brown envelopes.

Guaranteed to make any person with MS angry and anxious.

Since receiving Disability Living Allowance when I was diagnosed with MS, I now have to move to a Personal Independence Payment (which sounds enticingly exciting and intrepid?).

Well, it’s as far from independence as I can fathom.

My own personal case to one side (one I am prepared to fight, and fight hard if necessary), let me just ask, ‘Is MS Curable?’ The DWP seems to think so. For every person who has been or is still on a lifetime award with DLA (and rightly so), you now have to prove you have MS?

MS. Is. Incurable. Incurable.

Why on earth should we have to prove MS is … incurable?

Disability is great at making us invisible. We stay at home, through illness, relapses and fatigue. When we do go out, we are faced with hostility and abuse. How dare you have a blue badge? Move out the way, you’re slowing me down. You’re not working as hard as you should.

And this is the epitome of rendering us utterly out of sight (where we should be?), stuck at home, beset by social isolation and ever-increasing disability. Well done, DWP.

I live alone, now The Teenager is at University. Of course, all my child-related benefits have gone. However, as any parent with Uni-aged children know, you don’t suddenly stop paying anything at all towards their upkeep. Plus, University is 30 weeks of the year. The other 20 are invariably spent Chez Parent (in my case, the only parent, my ex-husband not being in the picture for this). The expense, in part,  remains.

And you cross that hurdle. And as the only person in the household, you trim your cloth according to your means. You adjust to a vastly reduced income, despite vaguely similar outgoings.

And then they come for you. The payments that made it possible to stay in work, to pay for help around the house. And now all that could disappear.

I’ve done the maths. My weekly disposable income with The Teenager at University is embarrassingly low. If I lose my disability payments, I will be in Minus Living.

What sticks in my gut with this whole thing is that I have worked my entire life, fought off a workplace discrimination case, started work at a new job and am still working. A job that fits around my MS, so-called ‘good-days’ and the utterly horrendous days, not forgetting the Can’t Function At All Days.

At this moment in time, I have been brought down so low, it’s hard to know how to come back up again. I could lose my house.

And I really thought I would be rewarded by trying, by dragging myself out of  bed day after day after day, all these years. By pushing myself to do things I would not have attempted previously.

There’s the nub. I should give up work. I should accept I have no other wage coming in. I won’t be able to live independently. And maybe I would Shut Up. And disappear.

D is for Diabolical Discrimination.

W is for Why are you doing this?

P is for Please, give me a break?

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