Tag Archives: DLA

Nov 14 2017
10 Comments
My Ramblings

This Is Not A Joke

a jokeA friend sent me what I thought was one of those online jokes this morning.

Except it wasn’t. It’s real.

I present to you the Department of Work and Pension’s ‘6 Tips for dealing with stress’.

These are the people who will soon determine whether or not I still have MS or if I have been miraculously cured. If cured, I stand to lose what little is left of my disposable income.

So, now that I have a huge form to fill in and am beyond stressed, what do they suggest?

Helpfully, in their introduction, they point out that, ‘too much stress can be unhealthy – around 9.9 million working days are lost each year to stress, depression or anxiety.’ Would that be the same stress, depression and anxiety they themselves are currently putting me through?

Anyway, the first tip is to ‘Address the Causes’, with the unhelpful and rather sinister tip, ‘it’s also important to learn to accept when things are out of your control.‘ Are they actually, seriously having a laugh?

Tips two and three  – Schedule Your Time and Take A Break – basically say the same thing – have lunch outside. It’s that simple. Apparently this can ‘prevent blockages‘ (huh?) and ‘inspire new ideas‘.

Tip four – Stay Healthy (lol) – again, suggests going outside (I think they are slightly obsessed, which is weird as they’re taking thousands of Mobility cars from people, who now cannot go outside).

Tip five – Keep in Touch – build a support network. And laughter is an excellent stress reliever, apparently. So is banging my head against a wall, if only I had the energy.

Tip six – Do Something you Enjoy – basically, do something you enjoy. They suggest reading or gardening.

Well, hopefully after reading these six tips, you all feel a lot less stressed. I know I don’t.

When this government department is snatching lifetime awards for incurable illnesses from people and pushing countless others into poverty, homelessness and worse, it seems callous in the extreme to publish such a flippant post.

Is it me? Am I missing something?

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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 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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Nov 01 2017
30 Comments
My Ramblings

Life Under A Brown Cloud …

pityEver since that hideous brown envelope plopped on to my doormat, life is, well, sludgy brown.

It’s remarkable just how much an ‘invitation’ (lol) from the Department of Work and Pensions, to move from DLA to PIP can suck the life out of you.

The days since Envelope Day are passing in a blur of those twin enemies, Fatigue and Fear.

Instead of moving forward in life, I feel I’m now stuck, analysing every symptom, everything I do and everything I cannot do.

It’s like having one of those harsh interrogation spotlights suddenly shining in my face, where I have to prove every single thing, without seeing beyond that light, to who’s sitting behind, making decisions which will affect my life for years to come.

I’ve lost interest in everything I normally love. I go to work (because I have to, otherwise I wouldn’t), I come home, I lie on the sofa and stare at the not-very-interesting splodge on the ceiling. I don’t cook any more. Laundry is building up. I can’t read, so I watch terrible tv. I sleep. A lot.

In work yesterday, I was hit by a wave of the most hideous fatigue, so overwhelming it was painful. I went to the van and fell asleep, my whole body wracked with nerve pain. My hands have stopped working properly and are tingling and numb every day. I can’t think properly. When The Boss dropped me off, I curled up on my sofa and slept for three hours straight.

I’m trying really, really hard to stay positive and to keep hold of a sense of who I am and the person I have become since being diagnosed with MS, but this experience is pushing me to my limits of endurance. Do you ever get that feeling you just want to lie down and say, ‘ok, ok, I give up, I tried, but I’m so tired of this, you win’?

I’m edging backwards to the terrible and soul-destroying Pity Party for One I held shortly after my diagnosis and I can’t seem to stop it. Going forward is not an option at the moment.

I’m clinging on to my old life by the skin of my teeth. I can live on very little money and still be happy. I’m inventive, a Womble, and quite happily make do with charity shop clothes and second-hand books.

When even that is under threat, what’s next?

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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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