Can I ever go on holiday again?

Of course I bloody can and of course I will! Stupid, slightly clickbaity question.

We're just back from two splendid weeks in Cyprus. Hugely stressful in so many ways. And utterly exhausting. Holidays shouldn't be stressful or exhausting, but Multiple Sclerosis dictates that it will always be that way for me, with the stress bit rubbing off on Mrs W too.

BUT, and a big, ouzo-flavoured, suntan-oiled, feta-cheesed BUT: the fun and the love and the relaxation and the adventure and the splashing and the laughter totally outweigh that teeny bit of stress and fatigue I mentioned.

Why was it so tough?

Finding a resort (and a room) in the first place that could handle my level of disability and yet still be child-friendly and child-fun. Getting specialist insurance. Nagging for a doctor's letter. Preparing my endless list of medication and equipment. Worrying that I've missed something. Worrying some more. Sending detailed info to the airline regarding my weird and wonderful wheelchair. Watching helpless and feeling useless as Mrs W covered the whole packing and preparing malarkey. It's been her role for years now, but it still pains me to sit by like a 1950's husband. And squeezing in some more worry about my medication.

Getting to the airport early, only to discover my wheelchair info hadn't been received. We oh-so-nearly missed the flight while the ground crew tried to establish how the battery could be transported safely. The inevitable tutting, harumphing and glaring as we were pushed past various queues. Stumbling to the loo in a demeaning, 'manhandly' way on the plane. And knowing everyone was watching my struggles. Worrying the entire flight my wheelchair would be ok after so many scare stories, (it was fine!).

On arrival... Dealing with the heat - a frequent, debilitating issue for many MSers. The worst bit this holiday: finding out I could no longer swim, my 'good' leg now too weak to help my crap one function at all. Another of life's pleasures gone. An hour or two every morning to get out of bed and get ready, while the rest of the family were already breakfasted and by the pool. Sneaking off in the afternoon for naps, then hauling myself back up for the evening meal.

And to top it all off, a good ol' bladder infection as the holiday ended. Complete with raging temperature, which meant that I only got a 'fit to fly' certificate with 30 minutes to spare on the return journey. (more fretting about my wheelchair, all was fine again).

Phew! All those minor inconveniences were offset in spades by the fabulous time we had.

My new Trekinetic wheelchair left me largely independent for the first time in years. More fun for me, less hassle for Mrs W and our long-suffering 12 year old.

An amazing disability specialist driver / helper called Ali. A roaring laugh and a bear of a man able to haul me up and around the awkwardest of steps and obstacles. He took us on some fabulous escapades which I could fully share with the family. A mountain-drive. Turkish Delight tasting. Pottery (bloody hell I was rubbish). Dodgy wine-tasting. Parasailing in parallel with our 12 year old, with the cheery boat crew happy to manhandle me on and off the boat and into my gear. And my teary, emotional highlight: after a 15-year gap, I was able to scuba dive again. Technically at least. Basically I was dragged round underwater by my dive buddy. But the delicious feeling of weightlessness was so mind-blowingly thrilling. To share it with my son was just amazing. Right up there with my three skydives...

So yes, I dread the next holiday and all the challenges I know we can look forward to. But I can't bloody wait!

Taking my wheelchair to untested heights. Pooping myself.

So I've got this fantastic new wheelchair, see. And it's red and funky and off-road and crowdfunded, see.

And even though the weather has been 'beige' and soggy at best, the mile-wide grin on my face each time we've ventured out, has kinda sizzled its way through the mist. Beamed out like a new lighthouse for the South Coast. Though lighthouses don't shout for joy much. Or travel at four miles per hour. Or take selfies. Or go home after a jolly good trip out. Bad analogy.

Even making tentative steps, so to speak, I've already managed ecstatic bundles of 'first time in years' moments. A snowball fight (see previous blog for a thrilling blow by blow account); a muddy promenade along the cliffs, with my twelve-year-old daredevil son begging me more than once to inch back from the edge; a crunchy wheel spin through soft sand; a whizz along the sand flats; and a rather embarrassing 'back wheel sink' into the wet sand at the water's edge. Briefly marooned. Oops. I make Mrs W so proud.

But now comes the real test. The one I'm pooping myself about. Not literally. That's for another blog.

Tomorrow we're off on holiday. On a plane. And at some point tomorrow - hopefully only at the foot of the plane - I have to surrender my expensive new lifeline to be loaded into the hold. I'll spend the next few airborne hours worrying about my 'Trekinetic' (which needs a name by the way. All suggestions welcome, though I have one in mind). Will it be damaged? Lost? Will they remember I need it delivered on the tarmac? Gah! And the entire flight I'll also be wondering just how they plan to get me to the loo in the very likely event I need a pee. Apparently it's all very awkward. Great.

I'll report back from the sun lounger. All will have gone swimmingly. I promise. I hope.

Joy snatched from the jaws of despair

A challenging few days in the Webb household. As if most of them are straightforward...

Eldest son on crutches with tendonitis. Borrowing an old pair of mine. Ah, those halcyon, dreamy days of still getting round on crutches!

Mrs W pain-killered up to the eyeballs with two slipped discs after a relatively innocuous-seeming tumble down four or five stairs.

Me ok (well, just the pesky Multiple Sclerosis). Younger son ok (well just the chocolate mess on his face and the traditional meltdown over English homework).

Sunday - yesterday as I write - started very very badly for me. 4am alarm to get a boy on crutches ready for a school trip setting off at 5.20am sharp. The sort of chore that Mrs W would routinely do to allow me my extended MS sleep, but there's no way she can drive for a good while. Still, eye-watering pain and all, she hauled herself up to supervise final checklist packing.

Hobbling on my walker to the car through thick snow on the ground and thicker stuff falling. Watching Mrs W carry a heavy bag to the car, because I never can, because a boy on crutches can't. Watching her grimaces and wanting to cry.

Setting off in the blizzard. I've never driven my hand-control car in the dark. Or through snow. Or with an excited son next to me chattering away as if he'd eaten a bowlful of sugar.

Arriving to the minute on time, yay! Cheery, considerate parents besieging the car to help Samuel and to carry his bags. Samuel joining the throng of pupils and adults in what looked like a mass hug against the elements. Like those bonkers penguins at the South Pole. The coach wasn't long and off they crunched.

And me, slumped in the car, helpless and exhausted. I have never felt quite so inadequate as a parent as that moment. Unable to help a (temporarily) disabled son with his luggage, unable even to get out of the car to do the mass bobble-hat and gloves wave-off... Driving home a little teary, though thankfully now in daylight and through lighter snowfall. Slumping back into bed and falling into a deep sleep, only to be woken by my own snoring. Charming.

Fast forward a couple of hours. Now there was lovely, sticky snow outside, a younger son to entertain, a wife to relieve, and my lovely new crowdfunded (thank you!) wheelchair to give a whirl. I haven't been out in the snow for years. Out I could trundle and trundle I did, yay! Threw some snowballs. Took far more hits than I landed. Joyous, hilarious, cold. It was only fifteen minutes, but it was just glorious! My son loved the novelty of me in action. I lapped up his squeals of delight.

OK, this is a bit of a tidal wave of bad health luck engulfing us for a short while. The tendonitis won't last, and slipped discs get sorted. (Ow though in the meantime). That'll just leave my MS and we can cope with that, mostly. I must remember to focus on the things I can do, and not grieve the ones I can't. Snowball fight anyone? My aim is appalling.

Sometimes I get scared...

I try to stay positive, really I do. And most of the time I manage it. 'Life is good, just different' is one of the many throwaway lines I have to describe my (our) weird existence outside the normal. We still have fun, we still laugh, we still seek out special experiences and try to give the children adventures and giggles. Mrs W works especially hard on that front, selflessly supported by our local beaches and Domino's Pizza deliveries.

I know I have a chronic, incurable disease that is usually progressive, and certainly is with me. After all, I've moved from diagnosis of an invisible illness 11 years ago, to a lurching left foot six or seven years ago, (I looked drunk basically, and mostly I wasn't). Onto a walking stick, then a crutch and briefly two crutches. Speedily onto a wheelchair, though still ambling round the house with a stylish granny walker. A bit like a zombie but better dressed. And any day now I'm taking delivery of a powered wheelchair. A funky one at least. It's got a gorgeous red seat ladies...

I know too that the illness will almost certainly progress further. I just don't know how fast it will go, how bad it will get, or indeed what bizarre new symptoms I'll have to experience down the line. My neurologists don't either. Nobody does.That's all part of the scary deal with multiple sclerosis, and through years of experience, a heap of counselling and the odd wobbly patch - mentally and physically - I'm generally acclimatised to the painful, exhausting and sometimes degrading future I face.

But every so often, right out of somewhere left-field, you are pulled up short by a mini tsunami. An emotion or an event or a comment that suddenly brings back all the primeval fears. Suddenly makes you look metaphorically at your reflection and realise just how ill you are, or worse gives you a stark glimpse of what is to come.

A couple of weeks ago a merry horde of our best friends descended on our new house, a couple staying for three nights, rising to a glorious crescendo of four families and fourteen people sleeping over on the Saturday night. It was a delightfully raucous time, full of food, booze and hilarity. I had to sneak away on numerous occasions to the bedroom for downtime, but these guys have known me for years and I love them for accepting me at face value. Pyjama days and all. It was brilliant, and we can't wait to see them again...

My first scared-person-in-headlights moment was on the Saturday when three of us sat down to a game of cards. 'Sevens' now you ask. I won't explain the rules. Anyway, my left arm and hand have been rubbish for a good couple of years now. Poor sensation, poor dexterity, and a tendency to 'claw up' uncomfortably when I'm feverish or tired. It's a while back that I stopped dealing cards or fastening my top button. And cufflinks? Forget it! I could still hold the playing cards though, and place them with my relatively good hand. Until that Saturday two weeks ago.

Suddenly my right hand was almost as bad as my left. I was cringeworthily, embarrassingly slow at sorting the cards I'd been dealt. And equally bad at playing each card. It was horrible. Sitting totally unfazed by a granny walker standing beside me, I hated every moment of that half hour of hand crappiness. Because multiple sclerosis had snuck up and caught me unawares. Because it was new to me.

The next day, with everyone preparing to leave, I was chatting over coffee with one of the dads. And without warning or any clumsy gesture, the (fullish) coffee mug simply dropped out of my hand. Now I know we are all capable of spilling drinks and dropping pasta on the floor. We've all tried to get red wine stains out of carpets with the salt trick. But I knew, instantly, that this was MS. My hand, my better hand, had simply failed in a basic task.

The coffee was mopped up and a fresh one poured. No fuss. Soon after everyone left and after a good rest, I found a handy playing card holder on Amazon - now delivered - and resolved to hold my coffee cup by the handle from now on. The problems were solved, and thankfully the strength in my right hand has returned to baseline anyway.

Scary moment short-lived, poker face back on... I live to laugh another day, and once again, like some rather feeble superhero, I know no fear. 'Life is good, just different.'

One Long Goodbye

I went to my (huge, brilliant) company conference this week. I don't tend to go any more. Long journey, long day, too much noise, too much going on, wheelchair kerfuffle, loo shenagigans, solo hotel scariness. Everything.

But this year I suddenly felt conscious I might never attend again, for all the above reasons and more. I have known lots of lovely people from across the business for up to eleven or twelve years now. And even if I wasn't saying goodbye, it felt like that to me. So I girded my tired loins, dusted a suit down, and resolved to go. (I confess I also knew I could massage my fragile ego with a cameo in a 'people' film due up on the big screens, talking about how well the company and colleagues have treated me over the years...). Here's my green screen moment filmed a few weeks ago.

I got to the conference in one piece and surpassed myself by also leaving in one piece, if shattered. And in between I said a mental goodbye to big, bustling conferences, and more importantly saw some hordes of people I hold dear. I beamed as we shared a hug, a hand shake or an air kiss, though I was crying inside. In the 2,000 strong hubbub of colleagues, I missed more people than I managed to see, but I tried my best.

A progressive disease like multiple sclerosis has its own cruel, insidious way of dealing out crappiness. Over a period of months, or years, or days, you are consciously or unconsciously saying goodbye to activities, to events or to people. Long scenic walks, then short walks. Then any kind of walks. Parties past 10pm. Then parties full stop. Lots of stairs, then any kind of stairs. Dancing. Hopping. Kickabouts, Cooking. Ironing (hurrah!). Doing up top buttons, cufflinks. Pouring hot drinks. An endless list of farewells that just keeps growing...

Sounds sad I guess. Not just for me but for those around me. I am trying to put a positive spin on this but it's tough. (though see 'ironing' above and add 'unloading the dishwasher' for good measure). Disability does bring its own gifts, sliding you seamlessly into a parallel world of empathy and love and special people that sometimes blows me away. But it's so very tough feeling bits of me and my life - our life - drift away. Wonder what's next?

(Un)Happy Birthday to me!

21st. 30th. 40th. Decent excuses to party, nothing more... I've never really worried about milestone numbers as my youth boogied and boozed its way into the distance and middle-age snuck wearily and grey-flecked up on me.

But I'm 49 as of this week. And the fact that in less than a year I'll be 50 is... is, well, it's weird. No matter that I've already got a disabled badge. That I can only manoeuvre my way around the house with a fetching NHS walker. That venturing outside requires a wheelchair and that I have self-catheterised for years. 50 will be a strange one. Probably.

I got seven cards, two text messages, seven 'phone calls. So far so normal for a 49 year-old. I also got 120 Facebook messages, seven messenger messages, five tweets, 49 on Linked In (where did that bizareness come from? I got none last year to my recollection...). How the world changes, eh? 'When I were a young lad,' etc etc, said in a croaky 49-year-old voice.

Anyway, am marginally grumpy about it all because:

- 49. See above

- Our plans for a nice day out were scuppered the night before by one of our two cats. Coco took a glancing blow from a car (we think) and did some nasty damage to his jaw. Mrs W raced him to the surgery and didn't get particularly encouraging signals from the vet. Hefty bill though.. A nervous night followed for us as we constantly woke to check if he was breathing. He was, and by morning he was bouncing round right as rain (albeit with some bone exposed and on some heavy antibiotics, he's not been given any all clear yet. We'll pay some more bills before that, no doubt.). The happy result of Coco being unexpectedly alive was that we were exhausted, and neither did we want leave him alone. A pyjama family birthday ensued.

- This was my first birthday without my sister, who passed away almost exactly six months ago. Hadn't expected that to strike me so hard, but it did. I'm learning that grieving doesn't follow any pattern you expect it to.

- This was also my first birthday in our new (rented) house. Not the most disabled-friendly. We'll fix that soon, but in the meantime, bah humbug!

- On the plus side and to end on a positive note I'm still here and still working. Statistically I should have been cast on the scrap-heap by employers bemused or uncaring about my MS. I work for humans, and brilliant ones at that. Yay!

- On a double-triple positive note, dear friends, also celebrating a birthday, are visiting this weekend. We can chocolate cake it in style, and try not to look Coco too closely in his rearranged face.

Scorchio! MS stands for Multiple Sclerosis. Or Maddeningly Slow. Or Must-have Shade

Oh jolly good. For once, our nation achieved the impossible: glorious, sweaty, bank holiday sunshine. Facebook UK was a fast-scrolling feed of paddling pools, BBQs, sprinklers, sunburn, deckchairs and alcoholic excess. And though I didn't open a newspaper to check, I can 100% guarantee that somewhere there was a photo of a horde of sizzling humanity on Bournemouth beach. Probably a Brighton one too. 

And meanwhile I was doing everything I could to avoid the heat. As, I know, were thousands more of my MS 'colleagues'. Rain or shine, I start every day disabled. But every hot day, especially a humid one, and super-especially when I am in direct sunlight for more than five minutes, I stagger swiftly and rather miserably up the disability scale. I shuffle slowly round the house like an extra in a zombie movie. I doze fitfully. My speech gets slurry. (No jugs of Pimms were involved in the making of this crappiness).

It's the central nervous system that's in a mess for MSers. Signals from our brain and down our spine start to mis-fire or don't arrive at all. More so as we progress fitfully down the MS path. I don't understand why heat is such an issue for us, but it certainly feels like those fuzzy 'signals' get fuzzier. And maybe that very struggle to get signals through, is what exhausts us. Maybe. I dunno.

In the ultimate irony, it's a widely held belief that Vitamin D deficiency - probably in the womb and perhaps early childhood - is a key component in the cocktail of bad luck that leads to us developing MS. And where do we get Vitamin D from? The sun, mostly. That thing I have to avoid.

The exact cause of MS is unknown, but it is probably a combination of factors. We are thought to be genetically prone in the first place, but then a 'perfect storm' of other stuff is needed to trigger it. Possibly a virus is involved, probably also vitamin D deficiency. It is much more common in the Northern hemisphere, in zones where there is less sunlight. So Canada, Scotland etc are real good places to develop MS... I've read somewhere that MS saw a sharp rise in Iran after the revolution there, presumably because women suddenly found themselves under the veil and getting much less sunlight. (MS is much more common in women by the way). It is also pretty much unknown among Inuits, Eskimos etc. the assumption there is an oily fish diet gives them all the vitamin D they need...

So there we go. MS is (probably) caused in part by a lack of Vitamin D, and increasingly our neurologists are suggesting we take huge daily doses of it in tablet form. I certainly do. And yet the same bloomin' MS won't let me sit in the sun - which is the best and easiest source possible of Vitamin D. Best eat some nice fatty salmon tomorrow.

I made the bed, I made the bed!

Well that's two hours I'll never get back. One sheet, four pillowcases, one duvet cover. 120 minutes to change the sheets. Then 30 minutes motionless to recover. Still aching a few hours later.
I know, I know, you can make bloke jokes about how crap we are anyway, or how if we just practised more, our times might come creeping down. And then we could try to identify the dishwasher in the kitchen, and maybe fill it properly. So funny.

It's not that of course. It's the bloody multiple sclerosis thing. That's what's laughing at me right now. What a ridiculous thought, even trying it. People run a marathon in just over two hours. Maybe I should do a sponsored 'sheet-athon'.

Once upon a time, and indeed not so many years ago, that was one of my many chores around the house. I cooked, I cleaned, I ironed, I shopped. I have a decent enough job - and incredibly supportive employers to boot. But Mrs W was always the stoopid hours, high-flying career-a-holic. Home she would come, slump on the sofa, and raise a hand signalling [insert full wine glass here]. I was happy to oblige, and only too proud to run after the catch of a lifetime.

Even after I was finally diagnosed a decade ago, I was happy to bear the brunt of the housework, especially as son number one had appeared on the scene by then and there was plenty more to keep my lovely wife occupied.

But all the while, those chores got harder to face, and I needed recovery time after the simplest of tasks. We have been prosperous enough to farm out the ironing and cleaning, and the advent of home delivery for our groceries was most welcome. (I do miss a good browse in a supermarket though). Me cooking a simple fresh meal is a rare - and dangerous - feat for me to tackle now, and my beloved recipe books - once a Christmas present staple - sit lonely on the shelf and gathering dust.

I still put the occasional clothes wash on - carrying the bundle precariously on my walker. But then it's down to Mrs W to empty the machine and hang the washing. I feel like I'm reverting to 1950's man. Make a coffee? Only if I sit next to the coffee machine drinking it. To carry it anywhere with said walker would be a messy disaster. Answer the phone? Only if it happens to be right next to me when it rings.Best rely on my family for pretty much everything. Fetch my slippers, light my pipe? Iron my newspaper then! Best not that last one as I struggle to turn the flimsy pages nowadays. Bah...

So every so naive often, I give in to the guilt I feel at being the hopeless, demanding one and try something wild, like changing the sheets. Or chopping some vegetables. And I always regret it. It's not that life is too short. It's that the chore is too long, and often painful. I am better focusing on what I'm good at. Talking  to the boys, reading to them, laughing with them. Pretending to understand the dab phenomenon. Listening to them with feigned fascination about their zombie horde video games and their massive milestone of 40 YouTube followers. Loving and appreciating my wife. Not sure I'm great at that last one. Must try harder.

It's a guilt thing, a feeling of failure and spiralling loss of control. Hard to shift, but I must.

First hotel date night - Me alone with my wheelchair

I've bungee-jumped once. I've jumped out of three planes. I've (briefly) piloted a tall ship without bumping into the Isle of Wight and drowning eighty souls. I've self-injected painful drugs hundreds more times than I care to remember. Way back when, I've skied some of the most daunting black runs in France and Switzerland. Hey, I've sometimes dared to contradict my wife on matters of furniture, fabrics and fashion.

But I've found few things scarier than contemplating a night on my own in a hotel with just my wheelchair for company. I wouldn't even be taking my trusty walker with me to get me up and hobbling round the room.

Packing the day before was frightening enough. Checking and re-checking drugs, clothes, PJs and catheters. Double and triple-checking the drugs. Chucking in some spares. Then repacking for easy access to the important stuff. I've always been a "chuck stuff in and find things later" kinda' chap. But that strategy doesn't work when even the act of opening a suitcase takes five minutes. When at least two of my drugs are highly addictive and the withdrawal symptoms rather unpleasant. And to forget catheters? Well, let's just say the housekeeping team wouldn't be best pleased with the guest in room 327 the next morning.

But you know what? It wasn't so bad. OK, I was stared at more blatantly and more frequently than usual... Perhaps because the dozens of tourists also in the hotel appreciated actually having something of mild interest in West Acton. And the solo meal passed without incident and indeed rather blandly...Phew! No glasses crashing to the floor, no pasta flying onto adjacent tables, and nobody tripping over my wheelchair.

I learned rather too late that barging and edging my way through fire doors is best done with help, and likewise inserting the key for my room then pushing my way in before it auto-locks again are skills to be developed.

I learned that staff are only too happy to help if asked - And that through the usual mix of misplaced pride and naivety I don't ask nearly enough. By the morning I'd figured it out. I could chuck my belongings back in my suitcase willy-nilly. Brekkie with assistance was a breeze. And checking out, the lovely porter chap was only too happy to push me round the corner to our offices. I treated myself to a celebratory cup of coffee there and breathed a deep sigh of relief.

I don't fancy it too often. Washing and dressing in unfamiliar surroundings is weird. I miss my wife, my children and my home comforts. But for now at least, it's a challenge I can survive.

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...

"Freedom!" (shouted in a manly but appalling Scottish accent)

I was free of Multiple Sclerosis last weekend. For a whole two minutes.

Milton Keynes was the unlikely spot for my brief whoosh of whooshiness. And Xscape the appropriately named building where, just for a fleeting while, I was as absent of MS as I'm likely to be for a while. It was emotionally and physically exhausting, but I'm still on a mini-high...

That's me, the deliriously happy chap in blue. And to the right of me in red the very patient expert trainer holding on to me for dear life and controlling my rather wayward limbs. Below me a huge fan blowing 110 miles per hour air right at us. Around and above us a wind tunnel.

Without expert trainer dude I'd have been all over the shop and breaking bones in seconds. With his guiding hands and strength I was able to soak up - or suck up! - the amazing sensation of free-falling, without a care in my shrunken MS world.

It's not that I think about multiple sclerosis all the time. Though I do, too much. I know.

It's more that most waking moments involve subconscious planning of my next few seconds, my next hour, the rest of the day. Can I reach that book? Shall I bother then? What can I use to haul myself up? Will my walker get past that pile of clothes? Time for drugs? Should I self-catheterise yet? Time for a nap? Energy to talk? Safe to cut a slice of bread? What was I just intending to do? What's that sharp new pain in my leg? Am I sitting like my physio told me to? (No, usually). Will I get to the phone in time? (No, usually). Is it too late to have some water before bedtime? (Yes, usually). Hey ho. It's what I've been used to forever, so the disabled me just treats it all as utterly normal.

To experience moments of utter clarity, utter focus on a new and sometimes bonkers sensation is just... bliss. Priceless bliss. I've skydived three times, I've ventured out in an ingeniously adapted tall ship, I've flown in a glider. And there are plenty more adventures on the bucket list. Hopefully Mrs W will join me on some of them. Amazing, courageous in so many ways, my fantabulous wife. But scared of heights. Awkward. ZipWire. Paraglide. Abseil. More skydives...)

I digress. I only clicked afterwards, but what set my "iFly" experience apart was the 'awesome' (that's eleven year-old speak), precious opportunity I had to share it with my older son. High 5's and fist bumps with him as we both took our turns to 'fly' were more special than he'll really know. I can't be there to kick a rugby ball about. Or fight a Nerf gun war. Or chase seagulls on the beach. I wasn't there to teach him to ride a bike. But I was there to share some silliness in a gusty concrete block in Milton Keynes.

Freedom!

(PS, He got all his mum's good looks)

Ten Years... Happy Diagnosiversary to me!

Tuesday May 1st 2007. It was cloudy and a bit miserable I recall. Perhaps some drizzle.

For the previous three or four months I'd been going through a barrage of tests for those clever-ologists to find out what was going on.

My brand new neurologist, a bookish little chap with small round glasses, had made me do various eyes-closed tests, touch my nose, touch each finger to each thumb in rapid succession, and some creative variations on walking in a straight line. He had also poked my feet with a pin a few times. I hadn't realised how numb they were until that point. Still a bit ouchy though.

My new urologist, meanwhile (the waterworks specialist), poked me and rummaged round in rather different places. Though fortunately not with a pin.

Off I was sent for a scan of my brain and spine (MRI). Strange, unpleasant, buzzy. They forgot to scan my spine so I had to go back. Strange, unpleasant, buzzy again. I blogged about one recently, trying my best to describe the awkwardness of it all... http://onemanandhiscatheters.blogspot.co.uk/2017/02/my-oh-my-oh-mri.html
And a lumbar puncture, otherwise known as a spinal tap in the USA and in the world of pop... It's truly horrible, lying side-on in the foetal position and having a doc drill millimetres away from your spine to extract a few drops of liquid. After the pain-killers, the sensation was a 'grinding' one. But it hurt like buggery for three or four days afterwards.
Finally a very strange test - as if the others weren't bizarre - where I had to watch some dots on a screen while receiving constant mild electric shocks to my hand. Ours not to reason why...

Weeks had passed by while the experts scratched their chins knowingly. Or more likely while my file sat in a sky high in-tray gathering dust. And all that time Mrs W and I sat there with rising blood pressure, biting our nails and wondering what was wrong with me. Joining the dots, we suspected it might be serious... Constant pins and needles; weakness in my left leg whenever we went for a walk or a run or a bike ride; bladder issues, with many a quick roadside stop, many a tree and bush enjoying my emergency visits; and 'blue pill' sales doing very well thank you...

A neurology appointment letter finally crashed onto our doorstep, but it was set for a month or more away. We just couldn't wait that long. Suspecting our GP might already know, we booked a hasty appointment with him. Big mistake. Huge. Our GP did know, but did he care? Had he thought about how to to tell us I had an incurable disease?  That MS symptoms vary from person to person and that the disease can be just as extremely mild as it can be extremely serious? Of course not.

The conversation is hazy in my mind, but I remember the GP's attitude. Relaxed, chatty, arrogant. As if he was telling us I had a verruca. He sent us off with no information or reassuring words whatsoever and I remember his closing nonchalant farewell, "Good luck old chap!"  Grrr... If he wasn't retired now, I'd find a way to get him retired. The rest of the surgery is great so I won't name and shame.

Home we drove in a daze and after a tearful hug, onto google I headed. Another big mistake. Huge. Within minutes, because it's usually the worst cases that make the headlines, I decided I had only a few years to live at best, and effectively my life was over.

Happily, I couldn't have been more wrong. Life is good, if challenging on a daily basis. With the love and support of family, friends, colleagues, carers, charities, volunteers, social media, health professionals and my amazing employers, I'm ok, honest. I need a wee though. And maybe a nap.

I dedicate this blog to incompetent GP's everywhere. Thankfully they are in the minority.

And they all lived differently ever after

Once upon a time (exactly 25 years ago in fact), 12,000 young, enthusiastic and adventurous people descended on a mysterious location one hour east of Paris. And all these youngsters were magically transformed into 'cast members' by passing through a special little school called Disney University. We came out smiling and laughing, excited about a wondrous new place about to open called EuroDisney. We were immortal.

And lots of us were given jobs like room-cleaning, popcorn-selling and heating up french fries. Some of us got super lucky and landed once-in-a-lifetime jobs like driving a steam train, playing a famous character and dancing in parades, performing as real live cowboy, or looking after VIPs and celebrities.

I landed that last job. I genuinely did have a wonderful other-worldly experience in the company of the likes of Gloria Estefan, Kevin Costner, Clint Eastwood, Eva Gabor. And Michael Jackson. Here's me front left in a garish blue uniform, and MJ hiding at the back after we mobbed him with dozens of characters and a marching band.

Also in the picture is the best Mary Poppins I ever met. She was played by Ali Flavell, cheeky and in character enough to turn to Michael Jackson and ask earnestly, "And who might you be young man?" He loved it...

We were having a whale of a time. Or so we thought.
Ali (aka a supercalifragilisticexpialidocious Mary Poppins) was about to be diagnosed with a brain tumour, whilst I was showing the first, mild signs of multiple sclerosis. Ali underwent some seriously aggressive treatment back in the UK, and made a pretty good recovery after six months of rehab. Meanwhile. I blundered on, oblivious to the ticking time bomb in my brain and spine, the protective sheath around my central nervous system being quietly chipped away by my own immune system.

I wasn't diagnosed with MS until 15 years later, Ali started getting unsteady on her feet over time as the ravages of her radiotherapy treatment kicked in. Both of us are now in wheelchairs.

12th April 2017, Ali and I met again at the 25th anniversary celebrations of EuroDisney (now Disneyland Paris.) Here we are, neither of us any good on our feet, but both happy as Larry. For the avoidance of doubt, I'm the one on the left, and she's the pretty one on the right.

Life goes on. Both of us are married, both of us are parents to two boys. I live a happy, if very different life to the one I imagined. And in times of doubt, I fear very much for what my future holds. I can't talk directly for Ali, but every single pic I see her in, she has a beaming smile. And when I talked to her last week, she was full of plans for the future. And just like 25 years ago, she remains blessed with an enormous sense of fun.

I came away elated from bumping into Mary Poppins again, and more determined than ever to live life to the full. Who knows what's around the corner? We're both rather better off than Michael Jackson after all...

Carer creep - The other side of the coin

Before my very eyes - or more poignantly, before my amazing wife's eyes - I am turning into an utterly cliche 1950's man. Just sit me on a rocking chair, lend me a woolly cardigan, pop a pipe in my mouth and I'm there. Perhaps a pristine copy of the Daily Mail would complete the picture. (Headline of the day - 'For goodness sake stay seated men! Why housework is good for women')

As my mobility, my balance and my dexterity reduce, so does any semblance of independence. I can hobble a few yards around the house with a walker, though I'm only really safe in a wheelchair or sitting down. I can't carry food or drink, I can barely prepare anything, and there are times when I can't get up out of bed. Or more scarily up off the floor after a tumble.

More and more, my wife, and sometimes my children, are edging towards becoming my carers while I just perch in the corner like some feudal Lord of the Manor. I hate it with a passion, while Mrs W and the children bear it with amazing love and patience. Glass of water? Yes sir! Plug my iPad in? No problem! Can you turn the lights on? Of course! What would you like for dinner tonight? Do you need the chair moving? Can I move the walker nearer? Need any help? Are you alright? Need your legs lifting? Put your socks on?

It's all the more painful for me that I have to lord it over the household because I always aspired to be quite the opposite as a husband. I'm seventeen years into a wonderful marriage and when I first met the future Mrs W, I instantly felt I was punching way above my weight. Still do. Almost overnight - this was 1999 - I reinvented my philandering, selfish, slobbish, lazy self to become Mr Modern Man... I cooked most of the meals, I did the washing and washing up, I made the bed and changed the sheets. Hey, I even did the ironing and cleaned the house. She was the beautiful and brilliant career woman, I slotted in merrily as the proud, devoted partner.

Every single one of those chores is now beyond me. Sigh... (I know there's the odd jealous person reading this, but believe me, it hurts). My greatest physical weekly achievement is to sort the sock pile, and even that usually slips to fortnightly.

I think I first became aware of 'carer creep' three or four years ago when the Sunday night job of putting out the bins began to be too much for me. I 'only' used a walking stick at the time, but I was always determined for the bins to be my job and my job alone. Thrilling I know, but as your everyday world is slowly and subtly stripped away, these teeny, symbolic things are important. Every so often those three or four years ago I would find that Mrs W had already moved the bins. It had probably taken her 30 seconds, whilst it would have taken me five stumbly, awkward minutes. And slowly as the months went by, it became an unspoken rule that my wife had assumed that chore. Many, many more have followed.

Carer creep. Perhaps the biggest and most unquantifiable symptom of Multiple Sclerosis is guilt.

On Porridge and Patients…

So my escape from hospital was brief by any depressing standard. Out Saturday evening in time for a delicious Thai takeaway, shared with my equally delicious wife. All the ‘deliciousier’ after five nights of beyond bland (‘they try their best’) hospital food. A lovely lazy Sunday with the family. Blue-lighted back in on Monday evening with another raging temperature, paralyzing cramp, and a brand new sensation to take in, a bladder in spasm! Indescribable but most definitely bizarre and thoroughly horrible.

Usual routine of an overlong stay in A&E and a confused couple of nights in an Assessment Ward. Then out into exactly the same ward as last week, and happily, a new selection of three different chaps to share the endless, relentless and often degrading routine of 24/7 hospital life.

I say ‘happily’, because alongside two pretty much unconscious patients last week, I was plonked opposite a truly odious man. He was the spitting image of politician and loudmouth George Galloway, complete with scowl and arrogant air of superiority. A bit skinnier and possibly older... I remember his real name, but I’ll call him George. George’s main sin was to be abusive to pretty much every member of staff. From cleaners to doctors, nurses to caterers, he always found a reason to take umbrage at their reasonable requests and routine questions. He shouted back, sneered back, complained to anyone in or out of hearing range, and generally tried his damnedest to make everyone’s life more miserable than his. The National Health Service is far from perfect, but it is full of overworked, underpaid staff, nearly all of them straining and multi-tasking as best they can to make life comfortable for patients. And in return they receive too little thanks, far too many snipes, and an astonishing level of verbal and physical abuse. ‘George’ was far from being the worst offender, but he was definitely the blackest cloud in shouting distance of my bed. And he was forever in my line of sight.

Having thoroughly grated my chattering teeth with his attitude, George further managed to wind me up with his insatiable hunger. Overnight, from 10pm and every couple of hours, he would emerge from deep sleep to shout out for breakfast and some biscuits. I would lie there suddenly awake and seething... When breakfast finally arrived he would order five Weetabix, a bowl of porridge, and two pieces of toast. Then demand more porridge. The rest of the day was spent in similar style, pursuing the next meal, and nagging for biscuits in between. 24 hours of non-stop evil foraging. I hated him, and that’s a phrase and a sentiment I try to avoid.

Just as I was due to be discharged – for the first time at least – I discovered George was in hospital with a brain tumour. When sufficiently healthy, he was due to leave his own house forever and move into a nursing home. I don’t know his prognosis, but I know he had a right to be miserable. And I know a brain tumour could have subtly or unsubtly changed his character.

I’m regularly reminding people that Multiple Sclerosis is often an invisible disease. Yet here was I having very very bad thoughts about poor old George with a brain tumour. I've learned my lesson I hope, and can only electronically wish George well. Must not judge, must not judge…

(His bonkers breakfast order still winds me up though) 

Blue Lights, Morphine and a Resuscitation Room

OK, so there's me booked to speak on Wednesday to 500 health professionals at the thrilling 'Infection Prevention and Control 2017' event. Lots of clever, senior medical people in the line-up And little old me, who wouldn't know his Metatarsal from his Metabolism. I was there because I'd been on the other side of the fence, twice hospitalised by bladder infections, or UTI's. Urinary Tract Infections. I do know that hokum phrase at least.
Here's proof I was on the line-up. I had 20 minutes to talk about my bladder. Rock 'n Roll...
Infectioncontrol2017.co.uk/speakers
So of course I had a blog lined up in my mind. How fun it was to say 'willy' at a medical conference. How when my first bladder control symptoms emerged I lived in France, so I could pee anywhere. That sort of thing.

And then guess what? Sunday night before my grand outing I felt weird, Monday too. And by the evening with a raging fever and painful cramps setting in down my left-hand side, I knew I had another UTI. The two nice paramedic chaps knew I had a bad case too and blue-lighted me to my unfortunate home-from-home, Luton & Dunstable Hospital. I was whizzed through from A&E into my own hideaway, disturbingly called the Resuscitation Room. They assured me this was just about speedy availability, but I did wonder just how serious this was going to be.

The team had a nightmare undressing me, as the fever had already paralyzed my left arm 90 degrees at the elbow, and was scrunching my hand into a painful, immobile claw. Removing my shirt around me was like a puzzle, though I did let them know they were welcome to cut it apart, so desperate was I start being pumped full of whatever.

Whopping catheter shoved in you-know-where, canular inserted (in my arm!), blood and urine samples carted off, UTI confirmed. But the pain in my cramping left elbow and hand were off the scale now. I was breathing fast and short, and my heart was pumping like a mouse's. I heard the word 'morphine' mentioned, and once that happened, I wouldn't stop nagging those around me to do the deed. It felt like hours, though was probably a matter of minutes. Morphine, marvellous morphine, intravenously. Almost instant, glorious pain relief and some freeing up of the tension. My fingers could move enough to take a crap selfie.

A whoozy two nights in an Acute Ward, with further odd morphine doses as the antibiotics grappled with my gremlins and my temperature - over 41 at one point... And early Wednesday morning a transfer to a normal,  four person ward. That three night stay has a whole other blog in it.

Suffice to say, I'm out and alive. Grateful to the overstretched NHS for acting so speedily, and for filling me with so many needles. And this visit, on at least two occasions, the morning toast was warm. A butter-meltin' miracle...

And now the unpleasant waiting game to play with Multiple Sclerosis. How much damage is done, how much can I recover? Right now I'm awaiting a home follow-up visit, then I'm back off to bed... No morphine though, but that's because there's no pain, hurrah!

My, oh my, oh MRI...

Bzzz, click, whirr, tock, bzzz, bzzz, silence. Click, click, Pacman-like beep, click, bzzz, more bzzz. Silence. Long Bzzzzzzz. Silence. Then a bzzz that sounds a bit like a vibrator. Apparently. I wouldn't know, obviously.

The endless, seemingly random set of VERY LOUD noises DESPITE HEADPHONES that overwhelm you as you endure your MRI scan. I've done three now, two a decade ago (the second quick on the heels of the first because they scanned the wrong bit the first time!), the third last Friday evening at precisely 7.10pm. What a lovely start to the weekend that was. This last was 'just' thirty minutes, the first two were close to an hour. Each of them bzzz'd like a lifetime. Everybody asks what music I listened to, but that wasn't an option for my MRI. Just noise, and the thoughts racing unchecked through my head.

MRI stands for Magnetic Resonance Imaging. I had to look that up. It's a narrow chamber that you'e trundled into. A clever bit of kit that uses magnetic and radio waves to zap right through you and take a precise 2D image of whatever part(s) of your body the clever medical people want to inspect. Apparently it avoids the risks associated with X-Rays though it doesn't feel like that at the time. It's entirely painless, though you mustn't move a muscle, (difficult when you are prone to spasms), and of course you can't deal with the inevitable itches that crop up. Every sound effect feels of doom, of illness, a little of despair.

I know what they'll find when the images of my brain and the top of my spine come through in a week or two. It'll look like someone has spilt tippex on little areas of my grey matter. It only makes sense to the neurologist: where they are, how many they are, and if any are active. That is to say, are these squidges currently doing further damage to central nervous system, or not? They just look like evil bubblegum to me.

I had this new MRI as my Multiple Sclerosis is progressing fast right now, with my mobility worsening fast and a newish symptom, neuropathetic pain, getting seriously ouchy. Seriously. My neurologist wants to see what is going on. Not sure what he will conclude or if he will offer me any new treatments, as I'm already at 'defcon 3' in what I'm taking to try to slow progress.

Hey ho. Has anyone found anything useful from having MRI's? I'm not convinced, but I generally do what I'm told...

Matt Dawson, me and Motor Neurone Disease

Matt Dawson (ex-England Rugby Union captain, British and Irish Lions star, sparkly Strictly Come Dancer, long running captain on TV's Question of Sport, rugby pundit and commentator and probably 'much, much more'...). Met him this week at the #PowerPartTime '17 event, celebrating people who manage to hold down a senior job 'despite' working part-time. He was on the list for 2017, I was class of '16. Nice chap.

He didn't know me from Adam as I trundled up in a wheelchair, but he was polite and smiley enough to indulge me. But I knew him, and not just from the telly. I fixed him with a steely eye (not really), and told him we were from arch rugby rival schools. Matt from the dastardly RGS High Wycombe, me from the mighty Aylesbury Grammar School. More than that, we had once played against each other. I was the proud captain of our 1st XV, he was a super-talented 16-year-old, catapulted into his own senior 1st team two years early.

It's ironic that with multiple sclerosis playing havoc with my short-term memory and concentration, my long-term memory is crystal clear, perhaps even amplified. Matt doesn't remember a jot of it, but he kindly listened to my 29-years-ago recollections. We'd trampled and trounced our way to the previous fixture: a 40-4 win at home. So despite now playing away and having lost all our star players - I wasn't one quite frankly - we were confident we could put up a good performance. And indeed on a gusty day and with the wind behind us in the first half, we were solid enough. One dropped pass away from a certain try, me kicking away in defence when we might just have run and scored. Meh. 3-0 to us at half-time. The second half was a different matter. We turned into the wind and 40 minutes later, trudged off as losers, 17 points to 3. I have a vague memory of an annoyingly zippy scrum half. Oh dear.

Enough decades-old rugby banter, pleasant though it is to reminisce about my once healthy body that could run and run. And run some more. And then drink five pints and stagger around in a comedy foreshadowing of my future self.

This week also saw the passing of a South African rugby legend Joost van der Westhuizen, after being diagnosed with Motor Neurone Disease some six years ago. Matt Dawson knew him well as a rival and a friend. He wrote a great tribute to Joost for the Beeb... http://www.bbc.co.uk/sport/rugby-union/38884906

Joost himself was very humble, upbeat and philosophical about his diagnosis, approaching MND with good grace, humour and a twinkle in his eye that lasted right until the end. He worked hard to raise awareness and he worked harder just to live. There are very few diseases out there that I know for sure would be worse then MS, but MND is one of them. It kills a third within a year of diagnosis, more than half within two years. MND (or ALS), is the one you all did the ice bucket challenge a little while back and it's cruel beyond words. At least most of us with MS can expect to live a nearly normal life-span. Maybe a year or three shaved off, and a chance of a rather icky, bed-ridden end. Not really looking forward to that bit.

But the death of Joost van der Westhuizen and so many other stories I read in the papers or online every single day remind me just how lucky I am. Sure, I've got MS. Sure, it's progressing a bit too fast and scarily for my liking. But there's so much misery and poverty and war and terror out there. And illnesses worse than mine. I reserve the right to whinge and to have bad days. But I'm not going to complain while there's worse out there.

I'll quote Joost in a 2013 interview I saw. I love his philosophy and I share his take on life. "I'm happy on the roller-coaster of emotions", "I have a family and two small kids, I'm fighting for them", "Two things we take for granted as human beings, health and time", "[when you are diagnosed], then you realise what life is all about."

Like Joost, but with more time to do it, I owe it to my family and to my friends to live as good and as fulfilling a life as I can. And frankly, what choice do I have, what route do I take? I'm doing my best to pursue the obvious. Happiness, love, fun. I'm doing my best.

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.