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My DLA (awarded for life remember) is now being withdrawn.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

Car Crash Multiple Sclerosis

So this week I had my first hand control driving lesson. I survived, as did the car, my instructor, and Dunstable. Hurrah! After 30 years of 'normal' driving - which Mrs W would tell you was pretty crap anyway - it's a very counter-intuitive way of getting around. I'm pretty sure nature didn't plan for this. I can only pray I get used to it.

In my instructor's version at least, a big handle - about the size and shape of a brass door knob - is attached to the steering wheel, and I use my left hand to steer with that. On the right hand side is a push/pull mechanism. You hold onto it constantly, pushing to brake, pulling to accelerate. A tiny switch on top of that lets you indicate. Perhaps I can pretend it's a bit like James Bond's eject button?

I confess I haven't yet got full control of the braking. It is overly sensitive, so more often than not as I pull up at a junction or a roundabout, I pretty much emergency stop. Or I totally emergency stop. Oops... And given I'm constantly holding onto the push-pull thingie and the steering wheel, I haven't yet figured out how to scratch my nose, or how to wave thanks to other drivers. May have to bribe passengers to do that.

I was already considering trying out hand controls before being forced to, knowing that the time was drawing nigh, with my left leg useless, and my right leg quickly heading that way. I't's been three or four years I've only been able to drive automatics, but my hand was forced - pun intended - by a whopper of a prang I had in the Autumn, Nobody was hurt thank goodness, but I wrote off the car in front of me (their air bags blew too), while the car beyond that got a small dent. All my fault - a lapse of concentration as I passed an interesting-looking pub. But there's a part of me that suspects I could have emergency stopped if my right leg had been that bit stronger...

There's a lot of inward sighing and harumphing as I take this on board, but just as when I finally started using a wheelchair and a mobility scooter, I know the cringe phase will pass and actually life will be more comfortable and safer for me and those around me. And just as with the chair and scooter, I'll actually be snatching back some independence from that dastardly MS. My shrinking world will flourish again just a bit, maybe only for a while. And I'll wish I did it yonks ago...

Four to six lessons apparently, then an assessment (yikes). So if in the next few weeks you see a dashingly handsome middle-aged man nervously frog-hopping a learner car down Dunstable High Street... Best give me space.

#multiple sclerosis #chronic illness #disability #MS Life

A 'meh' week at the MS office...

A mixed milestone in my surreal disabled world this week. Mixed because I should have caved in and done it months ago. I finally took delivery of a 'walker'. Once upon a time, it would have been a Zimmer frame but nowadays, they're plastic, they have wheels and they have brakes. Rock 'n roll, eh...

It’s another icky marker in the ‘progress’ – what an ironic way to describe what is happening – of my illness. Every one of these moments knocks me back a bit, and some blows are bigger than others. In no particular order: a new symptom. First time in a wheelchair; first walking stick; crutch; two crutches; first use of a mobility scooter; first catheter; first fall in public; first fall when alone; losing my permanent driving license; moving down to a four-day working week; self-injecting daily; booking assistance at an airport; first ambulance called out; first hospitalisation. Quite a lot of body blows and smacks round the chops when you add them up.

My walker, and another one I fought off for far too long, 'submitting' to a walking stick, were very much blessings when I finally accepted the inevitable. Partly because I was suddenly less of a danger to myself and others, bouncing as I was down corridors and grabbing random bits of furniture, and occasionally people, like I'd had two bottles of wine and a vodka chaser. Mostly though, because your average human being recognises the clear signal I am disabled and is so much more understanding and considerate. Sometimes it can get too much – I still want to do everything I possibly can for myself – and I certainly don't want sympathy. But from day one I appreciated the mini 'parting of the waves' as I hobbled down the street, the opening of doors, carrying stuff on my behalf etc. Hey, I never have to clear the dinner table any more, hurrah! Silver linings and all that.

Sometimes these ‘milestones’ are MS developments or MS-related incidents. Sometimes they are seismic decisions we reluctantly take because of MS. Whatever they are, these days are the tougher ones to deal with, and the biggies can take a long, long time to get over.

Sometimes I sneak a little cry, often I go into a slightly morose shell for a while, but at some point, I get used to my new level of disability. I get the hang of whatever new gadget or medicine or lifestyle change is forced on me, and settle into a ‘new normal’. And that can go on for weeks or months. Sometimes I opt for some counselling to help wade my way through. You can hardly forget about the disease, but you learn to cope with its new ‘level’ and carry on with life. Adapt and overcome, adapt and overcome.

Then, wham! Multiple Sclerosis decides you are far too comfortable with this level of chronic illness. “Here, have a new challenge to deal with. See how you like that!” it cackles. “I might leave you with this new conundrum for a day or two. Probably longer. Maybe forever. Ha!”

On Kadeena and cotton wool

The amazing Kadeena Cox. In 2014 she was diagnosed as having suffered a stroke. Not so long after that, she was diagnosed with Multiple Sclerosis. A national-level athlete beforehand, she's now a Paralympic, trailblazing legend.

Kadeena won Rio gold in two very different disciplines - cycling and track. A silver and bronze in relay events too. Holds some world records. Flag-bearer at the closing ceremony. Awarded an MBE. Shortlisted for Sports Personality of the Year. Appeared on a celebrity version of Robot Wars. She won that too. Also appeared on Celebrity Mastermind. Flunked her specialist subject on that one. (just goes to show you can't be perfect at everything. Mind you, serves her right for choosing Arsenal FC as her topic). Thoroughly lovely person, rarely without a smile on her face. It looks to me like she's having the time of her life, seizing every opportunity that comes her way.

Despite all this, she stayed - in relative terms - below the public radar. Then she announced she was joining the line-up for this year's 'The Jump' on Channel 4, where celebrities train for and compete in various winter sports disciplines, and at least in previous series, some of them get injured along the way. And all hell broke loose.... Her elite status sports funding was withdrawn for the duration of the programme. Various experts and celebrities piled in to question her wisdom in taking the 'risk' of competing in The Jump.
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Kadeena gets more kudos points from me for sticking by her guns and for her frank response. "Imagine living life as a ticking time bomb," she tweeted. "MS has changed my outlook on life, so I'm gonna enjoy skiing."
"Go Kadeena (MBE)!" I shout...

Multiple Sclerosis is the most common disabling neurological condition in young people in the UK. There is no cure. Whilst it won't kill us, (it may shorten our lives a little, but hey...), from the moment we are diagnosed our life is one long stream of uncertainty. How fast will our condition progress? Nobody knows. Which symptoms will I develop ? Nobody knows. There's a huge smorgasbord of symptoms MS can choose to dole out to us after all. They call MS the 'Snowflake Disease', because no two of us are the same. Kadeena could have years, maybe decades ahead of her without any significant worsening of her condition. But there's a chance she won't. Time to seize the moment and live life to the full.

I'm a year or twenty older than Kadeena. I'm in a wheelchair most of the time, and can hobble a few wobbly yards on crutches when I'm not. I have a huge bucket list of things I still want to do, to achieve. And a sadder list of regrets that I try hard to bottle up. Things I wish I had done whilst I was able. Other things I wish I could still do but are now denied me. 

Please don't wrap us in cotton wool. We are still desperate to live, to laugh and to love. Lots of us still have ambitions. Maybe radically different ones because of mobility, pain, fatigue, fuzzy thinking, vision issues. Whatever. I know my limits, I know the boundaries, though I push against them as best I can.

Kadeena Cox shouldn't be denied this latest, fabulous, slightly bonkers opportunity. I have never watched 'The Jump', but I'll be tuning in this year.

It's a start...

Bounding into 2017 with a blog. Just as I intended to in 2016. And 2015 for that matter. Possibly 2014. Start as you mean to go on and all that!

Big anniversaries, nasty and nice, for me this year.

25 years since I was a proud 'cast member' of the Opening Crew of EuroDisney, now Disneyland Paris. My first job there was looking after 'A' List celebrities, as you do. Michael Jackson, Gloria Estefan, Kevin Costner, Clint Eastwood, Eva Gabor. An endless bank of stories and memories there. And yes, in answer to your question, Michael was weird. I'm taking the family back there for the 25-year bash, 12th April. I'm super-excited about that, with lots of ex-colleagues I haven't seen for a decade or more. Not looking forward to rolling up in a wheelchair though...
I'm in front in the classy blue jacket. MJ is skulking at the back... Young, shy, and very very famous... (him, not me...)

25 years too since the first Multiple Sclerosis symptoms sneaked into my life. I can recall the exact moment and the exact spot in my home French village, Esbly, when I was struck with intense pins and needles down my left-hand side. 'Daggers and nails' would have been a better description. They stayed for three horrible, exhausting days. Then disappeared as quickly as they had attacked me. I was a bloke and in my 20's so of course I ignored it. A crap bladder quickly emerged in the following months. But living in France I could blame excesses of coffee and wine - and I could pee anywhere.

10 years since my official diagnosis. I had a good dozen or so years with very mild MS, even completing a third triathlon as recently as 2004... Strange things were afoot though. Worse bladder; stumbling on my left leg; strange sensations in my thighs; the odd spasm at night; no 'performance', for want of a better word, without a blue pill... Time to talk to countless GPs, neurologists, urologists, MS  nurses and take a barrage of tests. The diagnosis was relatively quick, and life would never be the same. For me, for my family, for my friends...

5 years since my first walking stick.That was a huge, horrible 'surrender' but at least it stopped people assuming I was drunk as I bumbled my way down corridors, tripped over steps and crashed into strangers. I've since accelerated through the gears to one crutch, then two crutches, with a 'walker' being delivered next week. Most of the time I'm in a wheelchair though...

5 years since my first hospitalisation for a 'UTI', Urinary Tract Infection. I know it was five years ago. We had just watched Mo Farah live at the stadium, winning his second gold medal of the London Olympics before we headed off for a UK holiday. That was rudely interrupted by a high fever, nastiness with my bladder, a 999 call and a blue-light excursion to Exeter hospital.Two nights in the Acute Ward on a drip.

1 year since my second UTI hospitalisation, this time during the Rio Olympics. Three nights. Drip again. My MS Nurse congratulated me on 'only' getting a bad infection every four years!

Some anniversaries that don't quite fit any pattern. 18th wedding anniversary, 11th work anniversary. I am grateful in very different ways for my lovely wife and my amazing employers for sticking by me!

It's going to be quite the year...