Finding my happy place again

"Life is good, just different", is my oft-repeated mantra. And it's usually true, honestly. Nothing Multiple Sclerosis has thrown at us has got me down for long. Well, maybe the excruciating nerve pain, a bit. And the phase when I was self-injecting every other day, each time basically giving myself the flu for 24 hours. Meh! I have a loving and much-loved family, a loyal, funny and indulgent set of close friends, and dashing good looks. Maybe not the last bit. At least my funky red wheelchair turns heads.

Right now I'm in a bit of a wobbly phase. I am yawning my way through bouts of fatigue, increasing nerve pain attacks and a more-rubbish-than-ever bladder. The less said about that last one, the wetter! A break in the mad bad weather has been a little helpful already. We Brits do love a sunny day or two. Even a week. But it's not so long before we start yearning for the rain that we're famous for, and secretly proud of.

A rain-dance of sorts is all the more important for many of us with Multiple Sclerosis. We are quite simply floored by heat, and just like another symptom, overwhelming fatigue, it is almost impossible to explain. "Yeah, me too," is the constant refrain. Hard to answer that, and harder to quantify. Every MSer is different, but personally on those 'lovely, sunny days', I can move less, I can think and concentrate less, I speak less and I try at least to sleep more. Despite spasming like a jitterbug.

I digress.

Last year we took a momentous decision to leave our dream home and start again by the lovely south coast. The area is beautiful, the schooling here has a great reputation and Mrs W was feeling an overwhelming need to be nearer her family as my condition deteriorated. I was fine with the idea, but really didn't think it through or prepare for it. Overnight I lost an accessible home, as well as my MS 'network' of health professionals and friends. And I stopped being in range of a pressurised 'hyperbaric oxygen' tank for my weekly dose of pure O2. My own family were also suddenly out of 'quick coffee' distance, just as we were all grieving the loss of my sister. All a bit surreal, all a little overwhelming.

I've had to come to terms with the fact my health is a notch or three worse than it would have been had we stayed. Nobody would be able to tell me by how much. No point looking back now, though that is what I have been doing. Slowly but surely, I have rebuilt something of a support network.
I've got a part-time marketing job with upugo.com that I can do from home. Great company, lovely boss.We have a regular stream of very welcome visitors to our abode, and to the brilliant pubs and restaurants overlooking the sea. We're having some great adventures. Too much fish 'n chips and calamari. Our two children are fine, with our youngest in particular absolutely thriving.

So what am I complaining about? Onwards and upwards! (And please keep visiting, lovely friends. You're my oxygen now!)

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.'

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.)

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!

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)

Urology. Rhymes with Eurghh-ology

Urology. The dark arts of investigating malfunctioning bladder and bowels. I doff my cap to anyone who enters or leaves medical studies and says, "I know, I'll become an expert in wee and poo and stuff."

Sadly, like many a person with Multiple Sclerosis, I'm well-acquainted with urologists and their capacity for rummaging around and describing with complete precision the shape and size of my prostate. All the while chatting to me about the time of day or this afternoon's weather.

And the title of my blog, "One man and his catheters," may just indicate one routine I have to follow three or four times a day. The first time I did it, the nurse training me, (no, she wasn't young, Swedish or gorgeous), told me she feared I would pass out. It really is rather scary at first poking something up your willy. But it soon becomes as routine as brushing your teeth. And much quicker. Best not mix the two jobs up though...

Usually a urology check-up lasts a few minutes at most. This afternoon, as a result of my recent morphine-hazy hospital stay with a stonking bladder infection, I'm in for a thorough examination. Could be up to four hours they tell me. I'm wincing thinking about it. And I won't be reporting any details back, thank you.

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...

Grief is Like a Box of Chocolates...

So my wonderful, beautiful sister passed away last week aged just 46. She leaves behind a brilliant husband and two great - and I think resilient - boys, 10 and 11 years old. Her death wasn't unexpected, but she struggled on so very bravely at the end. Three weeks in intensive care, with the NHS throwing everything at her and trying every possible solution to help her pull through. Close, so very close, but tragically no cigar.

Ironically, I was for a while in the same hospital, at the same time. Just not in intensive care.I was having my own tough little stay, but paling into total insignificance, as I knew very well I was coming out. Twice I was wheeled one floor downstairs to say what I thought might be 'adieu'. I put on a brave face the one moment she was vaguely conscious, and the last visit I was sobbing and breathless with despair as I knew this was the last time I would see her alive.

I loved her from the moment she was born, and she loved me back. Perhaps mum would correct me, but I don't recall a single cross word between us. Ever. Even when I came back one day and found my Action Man dating her Cindy Doll. Even when the majority of my early girlfriends got the cold shoulder and the death stare because they - apparently - didn't reach the exacting standards required for her brother.

This picture dates from 1988. I drove through Europe with a German friend and my sis joined us when we reached our final destination, Greece. We had run low on funds and were surviving on a diet of olive oil, salt and tomatoes, together with stale bread for dunking, bought cheap or begged at the end of the day from bakeries. Her arrival and shameless fluttering of eyelids and cheeky smile won us endless free helpings of calamari and ouzo from beach barmen desperate to win her affections. None of them did.

I miss her desperately. I'm still sending her texts and when I feel brave, calling her mobile just to hear her voice... I'm crying at the most random of things. Today among other moments it was looking at the blue sky and wondering where she was up there. And Eva Cassidy played on the radio floored me.

Mrs W and I have always talked about two moments that shaped our life together irrevocably. A fire in 1999 that destroyed everything we owned. We were left with some window-boxes, their geraniums and the clothes we were wearing. And my diagnosis with multiple sclerosis in 2007. From the fire, after the initial shock, we learned that material 'stuff' matters so much less than we think. And that only photographs are precious. From my diagnosis we learned to live life to the full, to fill our days with happy memories and to love those special people around us all the more. I usually remember those lessons, though MS frequently manages to get in my way.

Fire? Multiple Sclerosis? Right now they feel nothing compared to the passing of a loved one.

What have I learned from my sister's death? I don't know. It's all too raw at the moment but for now I'm hugging my children more. And through the fog of grief, I'm feeling lucky to be alive, I'm determined to appreciate the little things, and to hang on to all the amazing, happy memories of life with a cheeky little sister.

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.

Death sentences and Life sentences. The blue pill or the red pill?

Hurrah! I'm out of hospital after a total of 13 nights fighting a bladder infection and temperatures twice steaming scarily over 41 degrees.. My ward routine that started around 5am with a rude awakening for blood pressure checks and a refreshed IV drip is no more. It's been replaced these last mornings with a gorgeous 6.30am start, the time my two much-missed children are allowed to start bounding around the house before school. I'm utterly exhausted and I'm blissfully relieved...

My last five hospital nights were spent in a ward of four chaps including myself. One stubborn but lovely old gent of 89 also recovering from an infection. A big nose, a big smile and capable of humongous, prolonged noises when sitting on a commode thrice daily.

Another, a bushy-haired, goatee-bearded Scouser, was trundled in a few hours after me with increasing back pain and a hacking cough. It had come out of nowhere. When he arrived he was extremely and forever uncomfortable. By the time I left he was the colour grey, in agony, on constant oral morphine and had been diagnosed with at least three cancers, including bone and the esophagus (throat, roughly). It was terrifying to see him worsening what seemed by the minute, and torture every night listening to his suffering. He had a wicked laugh and kept it going through all the bad news and grimacing. He made a special effort for the constant stream of worried family and friends dropping in. Heartbreaking.

The last of the four was a 6 ft 7in East Londoner, loud and sweary of mouth. Never stopped talking but most of what he spouted was great fun. Like me, he has an 11 year-old son. He came in knowing he was two years into pancreatic cancer, but with a newly bloated stomach. It was drained of over 4 litres of fluid one morning - Charming, but I was delivering not far off that via a catheter, so each to his gruesome own. One morning, a posh-looking consultant marched in and drew the blue curtains around his bed. Those blue curtains are handy enough for privacy during a clothes change, a bed bath, or a musical sit on a commode (see above). But they're hardly the best way to deliver devastating news. I tried not to listen, but it was impossible not to. Right there, three metres away from me, he was told firmly but with compassion that he had three to six months to live. He hyperventilated, he wailed, he swore like never before, while I cried quietly to myself taking it all in.

As the curtains drew back, I considered pretending to be asleep, but instead took a deep breath, and asked him how he was. I let him pour out his grief and confusion, and slowly he came to a calmer place. He called his wife in and gave her the news. More counselling, more gnashing of teeth. Given I was feeling bloody awful myself, and with Scouser possibly facing a similar fate, these were perhaps the hardest, most intense few days of my life.

I have a life sentence. There is no cure for Multiple Sclerosis, and there's unlikely to be one in time for me. Indeed probably not for a long time after. At my MS Centre, I meet lots of cancer survivors who come in to use our Oxygen tank to accelerate the healing process. I learn so much talking to them. They are usually in remission, and hoping that they'll stay that way. I look at them unable to comprehend what horrible treatments they have faced. They look at me, permanently disabled. More often than not, I know they are glad they have 'only' had cancer. And I'm glad I 'only' have Multiple Sclerosis. We frequently and guiltily say it out loud to each other.

The guys in my ward were cruel extremes, but definite Life Sentence or (potential) Death Sentence. Which would you choose? I hope you never have to.