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Wednesday, 30 May 2018

World MS Day. Celebrating my Multiple Sclerosis?

So today is World MS Day. It's been trending on twitter, hurrah! It's also World Otter Day, and now that's trending. Sounds much more fun. Hip hip hurrah and a round of applause!! And since I know of no cases of otters with MS, I can happily mark both without compromising my beliefs.

I'm glad awareness of MS seems to be on the rise and I try to do my bit. I'm blogging here after all, I've had a wee waffle and the odd exchange on twitter. I've updated my professional LinkedIn Profile with the new skills 'nodding off' and 'pretending I'm ok'. Unfortunately I haven't come up with a genius idea like the Ice Bucket Challenge, which did so much to raise awareness for Motor Neurone Disease. Maybe next year.

So today, to celebrate MS Day I welcomed a specialist nurse into my home. You'll find no 'young Swedish uniformed blonde' jokes here whatsoever. Rather grimly she visited to re-educate me about self-catheterisation - which I have to do three or four times a day - after my latest bad infection had me in hospital and on morphine for the second time in just over a year. Turns out I am doing everything right and maybe I'm just prone. Bah! She left me after just half an hour with a whole set of new-to-the-market catheters to try. How exciting is that? Up there with our 12 year-old's latest video games probably.

And to see in World MS Day early - because it's so exciting obviously - I spent yesterday evening in moments of excruciating pain while my nerves played havoc for a couple of hours with the inner workings of my left thigh. I can best describe it as intense electric shocks, or perhaps red hot fireworks, shooting down my leg at random intervals. Sometimes seconds apart, sometimes a minute or three's respite. Ouchy anyway, and given it was nerve pain, not a lot that drugs can do. C'est la MS vie.

So, am I celebrating today? Not really. I'm tired. Knackered. Looking at catheter brochures. Good news is, tomorrow's another day, and hopefully I'll sleep like this baby otter tonight. Happy otter day each and every one of you!

Friday, 27 April 2018

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!

Tuesday, 3 April 2018

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.

Monday, 19 March 2018

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.

Monday, 5 March 2018

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.'

Wednesday, 14 February 2018

Paying love and kindness forward - How the world should work

'Be one of the good guys'. That's one of only two life rules I give our young sons, (the other being 'work hard'. Not sure how good I was at that when school age). 'Be one of the good guys' plays well I think as an overall philosophy, but also as a parent, it works suitably loosely when I need to haul them over the coals for any - rare of course - transgressions. These two rules might not make them rich, but I'm hoping it will make them, and others, happy. Far more important in my book.

Yesterday, on Valentine's Day Eve, I received a fabulous note, via a stranger on LinkedIn of all places, reminding me of a kind, 'go the extra mile' gesture I had made over twenty years ago. At the time I worked for Disneyland Paris, as I had done since it opened in 1992. It was a magical, surreal time in my life, and on a daily basis I was able to do and witness amazing things. A hug with Tigger; a quick roller-coaster ride in my lunchtime; watching show rehearsals and testing new rides before any guest got anywhere near them; meeting 'A list' celebs, and Z list ones too, (most of them nice, honest); drinking gallons of Long Island Iced Tea in a Country 'n Western saloon in the presence of genuine cowboys and native Americans. Yeehah!

I had completely forgotten, but the message on LinkedIn was from a US-based chap. He was letting me know that I had organised for him to access an out-of-bounds balcony, (also after park closing, equally naughty!) at the iconic 'Chateau de la Belle au Bois Dormant. This gesture, doubtless breaking countless rules along the way, allowed Eugene to propose to his then girlfriend. 21+ years on, and with their 20th wedding anniversary looming, he was letting me know what I had helped him do, and what it had led to. I was incredibly touched that he found me and contacted me after all this time, and very moved to hear what a special memory I had contributed to.

Life as a disabled person, life with a progressive illness is tough beyond words, but I try to convey it as best I can. You'll read in the newspapers and online, on social media and via our shouty campaigning about what we are missing, what we are losing, what injustices we are subjected to. This is painfully true and I'll continue to scream it. But the other absolute truth is that millions of people out there are capable of overwhelming selflessness, thoughtfulness and kind gestures. Without these people in the world we would struggle to last a day.

Only late last year, a dear friend of mine launched a Crowdfunding campaign to buy me a funky off-road wheelchair worth a stupid amount of money. Donations piled in, and by January, the target was smashed! There were some amazingly high single contributions by individuals and companies, (thank you!). But I was equally touched by the many 'Anons' who contributed, or friends of friends and total strangers who did so. Or those who clearly couldn't afford it and shouldn't really have felt it necessary to help. But they still did. (Thanks in spades, thank you all!).

I understand that governments and oil and business and banking and corporations and all that malarkey are a big part of what makes the world go round. But rather than buying into Bitcoin, I would prefer to invest in kindness and empathy, as I have always aspired to. On second thoughts, maybe I'll invest in Bitcoin too, so we can contribute to other fabulous Crowdfunding causes.

Please be one of the good guys, the payback can be enormous... (Feels a bit preachy, sorry. I'm on a mini high thanks to Eugene, Sleeping Beauty's Castle, and a wacky wheelchair with a red seat that is on order.)

Friday, 2 February 2018

Moving on. Grief and relief in equal measure

Phew! Yesterday was my first day out of work in decades and I've survived. Coffee and pastry in bed courtesy of my gorgeous, hard-pressed wife. Bit of aimless internet browsing. Ordered some mouthwash and a boxed DVD set. A lot of chat and 'wowness' reacting to the overwhelming tide of support and love flooding in from social media. Twitter, Facebook both busy. LinkedIn bonkers, absolutely bonkers. 450,000 views when I last looked, and I only posted two days ago. Lovely, lovely comments to warm my confused and doubting heart. Confused and doubting because even yesterday, I really wasn't sure I had done the right thing. For me or for the family. More coffee by the sea to reflect and breathe. Multiple visits to the loo as a result.

My LinkedIn post was something of a eulogy to Dixons Carphone and how the team have treated me during my time there. After all, I strolled in twelve years ago oblivious to the fact I had MS. And rolled out in a wheelchair. All the time, from diagnosis through to departure, I have been so very well treated, and I won't forget it. Should be the norm, but it isn't....

I've been rather quiet on my blog, and indeed on social meeja, while I wrestled with the idea of leaving my safe, cosy job full of great colleagues and handy benefits. (Handiest of all, pay). Change is hard and scary at the best of times, but when I genuinely don't know what's next, it's just terrifying! Who'll pick up the phone to a bloke in a wheelchair? How long will my fuzzy brain stay not-too-fuzzy-most-of-the-time? This growing feeling of grief I have felt these last few weeks at the thought of leaving, and of missing colleagues. Will it go?

It's been perhaps six months of angst since it dawned on me - and Mrs W - that maybe I should move on. I was working harder and harder. A bit to prove to myself I was still functioning. A lot because I needed to just to keep up. Some point soon I was going to let someone down, and I was exhausted.

And 2017 didn't help at all in the whole process. It was far and away our 'Annus Totalus Grieficus'. Losing my beloved and beautiful younger sister. Leaving my own small hospital ward at exactly the same time, knowing that two brave, cheerful guys in it would soon be dead from aggressive cancers. Moving out from our dream home (and away from a dream group of friends) to kick-start a new existence by the sea. Experiencing a 'faux grief' when our then 11 year-old ran out in front of a car and was hit full on at 40mph. He was out of hospital the next day with only deep cuts, bruises and a bit of internal bleeding. A miracle, but the 'what if' hangs over us every single day, even now. And to cap it all, our kitten dying the very next week to bring everyone's trauma - especially our son's - flooding and wailing out... Oh, and then our gardener briefly disappeared down a gaping sinkhole that suddenly opened up. on our lawn Turned out to be an abandoned well, but made for a good story and summed up our year perfectly.

Grief, grief, grief.

So how do I feel now? Relief relief relief. Looking back, Dixons never put a jot of pressure on me. Hopefully because I was doing a half-decent job. Partly perhaps because they appreciated what was happening. The pressure was all me. Already I am getting back on an even keel. Now I have time to stretch and exercise. Moments to nap. And on the flip side, the phone-calls and emails haven't stopped with juicy opportunities to explore. So much so that I have pushed everything back to next week whilst I take it all in.

Leaving Dixons Carphone was a surreal and painful thing to do. Leaving colleagues I have kinda grown up with was awful. But now I know my body and the winning 51% of my befuddled brain was right. And Mrs W is always right. Onwards!