When excellent news feels really, really bad...

2012 was such a wonderful year, wasn't it?

The Queen's Jubilee. Celebrated with the usual pomp, pageantry and a touch of pomposity, but with a surprisingly funky pop concert too. We even had that oh-so-British group 'Madness' playing loud and proud from the roof of Buckingham Palace. From the roof! And we all politely ignored the fact Sir Paul McCartney was way out of tune. Because he's kinda' royalty himself. And hey, even if you frowned on our quaintly outdated traditions or our out-of-touch royal family, at least you got an extra bank holiday that year...

Then the 'Friendly' Olympic Games and the heart-burstingly stupendous Paralympics,.Where 'Great' Britain beamed and competed its way back to just a smidgeon of genuine greatness and self-respect.

Ironic then that that same glorious year, 'The Welfare Reform Act' was passed. Lots of tough to swallow legislation was crammed in there, but the bitterest pill for all of us scrounging disabled's, was the shiny new 'Personal Independence Payment' scheme. PIP. To replace the Disability Allowance, or 'DLA'. The DLA those of us with permanent, incurable illnesses were told would be for life. Made sense really because we had illnesses that would never get better, would never be cured, and in many cases worsen. It's only a few quid a week, but a lifeline to many. For me, still employed, it's been the opportunity to top up my pension knowing I'm unlikely to work until retirement age, and that life after work will be tough and costly.

Now we were impolitely informed our 'lifetime' DLA wasn't forever after all. And we should patiently await a PIP assessment. With stricter criteria, chosen apparently at random, and ignoring both objective advice and relentless lobbying. Five years Mrs W I waited for the letter. Five years of anxiety and speculation. Followed by more fretful weeks once it had arrived as I painstakingly filled out the lengthy questionnaire. More ominous tick-tocking whilst I awaited an appointment for a face-to-face assessment. And then the most painful holding pattern of all. When would the brown envelope with my (our) results crash onto our doorstep?

Kaboom! There it was one morning and I opened it with shaky hands. Well, even shakier-than-normal hands. And what do you know? I was awarded the maximum allowance possible. Result! Yay! Phew! Hurrah! Wahey! Fantastic news! Etc etc.

Except no, not really. What was written down there was that I really am rather disabled. Very disabled. There's much worse out there I know, but I had been classed by the stingy box-tickers out there as rather in trouble actually, by any measure... More than my first time with a walking stick, more than my first time with a mobility scooter, the reality of life right now really smacked me in the face while I was already on the canvas.

I can still recall my first time in Costa, Leighton Buzzard, where I dared utter the words, 'slightly disabled' when asking them to bring a coffee to my table. Only half of the cup's contents would have reached my mouth had I carried it. Now I don't have to ask for anything really. It's all delivered to me, handed to me, carried for me, moved out of the way for me. And I don't like it.

Oh well. My pension pot will be growing a little faster...

Oh Flip. PIP... The document of doom...

It had to happen eventually... I've been dreading it since it was announced, and a hefty envelope finally crashed down on our doormat, throwing up dust, desperation and a smidge of depression. I'd been unhappily sitting in the queue with all my other disabled 'colleagues' in the UK, waiting to receive the 'document of doom' (said in a deep, echo-y voice). And now it's my turn to fill in a scary monster of a 'Personal Independence Payment' booklet to justify my disability to the ever-so-caring powers and bean-counters that be.

Once upon a time I was awarded a modest 'Disability Living Allowance' (DLA) to help us with the cost of living with disability. Gadgets such as a travel scooter to stay relatively mobile. Odd-sized shoes to fit my different orthotic foot support thingies, (Size 14 on my left foot. That's big.You know what they say...). Ready meals because I can't safely prepare anything more than a sandwich. Endless trips to hospitals and treatments. Drugs and vitamins not on prescription. Higher insurance. And and and, etc etc etc... This 'DLA' was supposed to be for life. Like too many other conditions, Multiple Sclerosis has no cure after all, and is generally progressive, so why shouldn't it be permanent?

The four-weekly payment was never enough to cover the extra outgoings needed for our family in dealing with my condition, but it was (is) extremely welcome. And whilst I'm still in a job, it has allowed us to put extra cash into my pension, knowing that one day soon, MS will summarily decide I can't work. And that in retirement, I'm likely to require increasing support, care, maybe even hospice time... I'm lucky, so lucky to still have a job and have understanding employers and bosses at Dixons Carphone. Many don't have that 'luxury', and DLA is their only lifeline.

My DLA (awarded for life remember) is now being withdrawn. I have to apply for it's replacement. PIP. PIP has been dressed up as a way to recalibrate the system and to ensure those who really need support get it. But guess what? It also arbitrarily redraws the boundaries and measures used. It saves the Treasury a teenie wedge of cash, but of course shows what a jolly good, determined job is being done in reducing the Welfare budget. And plays nicely to the audience and certain media convinced that we're all scroungers, a waste of space, an awkward, embarrassing blot on the landscape.

As the process goes on and more of us receive that lovely envelope, less people are receiving PIP payments. Most of them thoroughly deserving of, and desperate for, support. And a life. Many of those that have been stripped of their 'permanent' DLA payments are now marooned at home without any means of transport. Cutting back on heating. Or food. They're isolated, depressed, suicidal... Decisions appear to be random, or based on a tightened noose of tickboxes that need you to be really, really disabled instead of just really disabled.

Enough whining. Now I need to work my way through the questionnaire, laying myself bare with my MS Symptoms. To a pen-pusher with no medical training. Can you dress yourself? Can you wash yourself? Which bits? How far can you walk? Can you prepare complicated meals? Simple meals? How do you manage going to the toilet? Any disasters? Do you cope with social occasions? It really is great fun trying to show off about your disability, outlining all the ickiness we live with.

The 'document of doom' (said in a deep, echo-y voice) is complete...

#multiple sclerosis #chronic illness #disability #MS Life