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.

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.)

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.

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.