Tag Archives: PIP

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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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 13 2013
24 Comments
Work and Studying

MS, DLA And Work….

MS, DLA and WorkLet’s get one thing straight. DLA is not an out-of-work benefit. In fact, it helps many people with MS stay in work.

The Government and media’s growing focus on ‘fairness for taxpayers’ leads many to believe that disabled people are a separate group who contribute nothing to society.

A Freedom of Information request, published in August this year, stated that the number of working age people receiving DLA is 1,839,000, of which the number of those in employment is 386,000 (21%). There are 127,000 people living with MS in the UK with just 50% of them claiming some form of DLA (63,680).

Working with a variable and unpredictable illness is difficult enough in a recession-hit economy and with hardening, right-wing attitudes towards anyone disabled, it’s no wonder the figures for those with MS in employment are so shocking:

  • Fact – more than 75% of those with MS say their condition has impacted their employment and career opportunities.
  • Fact – up to 80% of people with MS stop working within 15 years of the onset of the condition.
  • Fact – up to 44% of people with MS retire early due to their condition (the European average is 35%).
  • Fact – people with MS lose an average of 18 working years.

As DLA is phased out and replaced with PIP, people with MS will be forced to submit to humiliating re-assessments to check that we are indeed still living with a degenerative, incurable illness. Note the word ‘incurable’. Perhaps the Department of Work and Pensions should be renamed the Department of Miracles?

Working with MS means coping with reduced dexterity, cognitive impairment, limitations in mobility and overwhelming fatigue, among many other symptoms. Coupled with some employers lack of knowledge and understanding of MS and it’s easy to see how staying in the workplace can seem like an uphill struggle.

I’m fortunate. After a hideous year of relentless bullying by my previous employer and colleagues which ultimately led to me being sacked for having MS, I now work for someone who has taken time to learn about the condition yet is also aware of the strengths I can bring to my job.

DLA can make a real difference to people – just ask David Cameron, our venerable Prime Minister. The multi-millionaire (and son of millionaires and son-in-law of millionaires) once claimed it too…

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Jul 04 2013
22 Comments
Daily Life

Speak Up, Be Heard

PIPSpread the word – cautiously optimistic news – the Department of Work and Pensions are reviewing a recent decision to change the mobility criteria for the new Personal Independence Payment (PIP).

This comes after the MS Society and 50 other charities that make up the Disability Benefits Consortium challenged the strict mobility criteria for PIP and highlighted the devastating impact this would have if it wasn’t reviewed.

For the old Disability Living Allowance higher rate mobility payment, applicants had to prove they were unable to walk more than 50 metres. To receive this enhanced rate under the rules for PIP, this was cut to just 20 metres.

People with MS and other disabilities are now being asked to raise their concerns about these changes. The consultation would like us to answer one question – ‘What are your views on the moving around activity within the current PIP assessment criteria?’

We all know that the particular problem with MS is it’s variable nature. Some people can walk 20 metres one day and yet be unable to get out of bed the next. The very fact people with an incurable illness are being reassessed at all is heartless and the changes are causing unnecessary worry and fear. If a person who has previously been awarded the higher rate of mobility allowance and has a Motability car, they are in danger of losing this vital lifeline if they are reassessed and found not to be eligible under the new rules for PIP.

If you think you will be affected by the changes, you can respond to the consultation by reading it here  (details of where to write to/send an email are at the end of the document) or you can email the MS Society  – campaigns@mssociety.org.uk – and they’ll let you know how you can get involved in the campaign. We need to be quick though – the consultation ends on Monday 5th August.

Anyone who has ever applied for disability benefits knows it is not just a case of filling in a form, nor do we receive free BMW’s as the press would have the public believe in their continued witch hunt against disabled people. If we don’t speak up, we lose our voice.

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