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Friday, 8 December 2017

Bad news I was expecting still hurts

So almost on a whim it feels, we've moved house, moved counties, changed everything. We've trundled down the M3, leaving behind one of the most landlocked areas of the UK, and rented ourselves a chalet bungalow while we sell our own. The new one is just a farmer's field away from a cliff overlooking the sea and the Isle of Wight. Dazzling sunsets, blustery nights and the distant crashing of waves. Some bleating sheep chipping in from time to time. We've left behind fabulous friends - though it's been brilliant to have so many visit already (thank you!). We've swapped one set of family for another, and found two new schools for our boys.

Change-averse curmudgeon that I am, I'm learning to embrace our new life as well as I can, and that challenge is made so much easier because our children love it here! Coco the cat is purring too, though not sure the dwindling local vole population is as chuffed. I miss our old life desperately, especially my family and the MS support network which was so important to me. I've yet to re-establish that here and I know my health is suffering as a result. I'll get there. We've found a favourite pub, a favourite restaurant, a delicious Thai takeaway. Not quite the perfect chippie yet, but decent enough, and research is ongoing to fix that particular shortcoming. All in all, not a bad start.

Based on first impressions, and oh so important to us, the NHS set-up here seems just great. Lovely local surgery, prompt, polite, on it. Equally great hospital. An occupational therapist who cares, a few home physio visits booked, and a neurologist who is time-pressed (aren't they all?), but knows her stuff. We had our first meeting with her this week, and she ran me through the usual pile of questions and tests. Push against here, balance there, clench this tight, pull that. Bla bla bla.

But then the prognosis. I knew it was coming, I've feared it but felt it, and my last neurologist had already suggested it. Sadly, both the old and the new brain gurus are confident my MS has moved into a new and uncomfortable phase. Where once I was 'Relapsing Remitting', I'm now 'Secondary Progressive'. Complex wording for a complex development in my MS life. Essentially though, my condition will gradually worsen (well, it does that anyway, scarily fast right now), without some of the relapsing peaks and remitting troughs of yesteryear. An overhanging but small risk that I could worsen fast. No big deal. But the bad news, the really bad news, the bit I can't yet get my head round: there is now little or no medication to stem the relentless downhill journey of 'secondary progressive' MS. And not a great deal of advance out there in research terms.

I feel a tad bewildered. Most of us with this illness shout 'Cure MS' or similar battle cries to keep us going. We know it's unlikely, but just like the lottery, there's always a chance isn't there? Frankly, my new diagnosis means the odds of anything meaningful happening in my lifetime just dropped off a cliff. I've moved into the minority group of MSers. Drugs companies glaze over at the very mention of Secondary Progressive because there are less of us to make their millions on. Experts shrug because we're too far gone and our condition is even less understood than 'Relapsing Remitting'.

I'm a little lost, and it doesn't make life any easier for the long-suffering Mrs W. Hey ho. I'll cling to the fact our boys do like to be beside the seaside. And I'll live in hope we can find some decent chips.

Monday, 13 November 2017

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?

Friday, 20 October 2017

When your son gets hit by a car

Spoiler alert: he's ok!

23 medical professionals of all shapes and expertises were waiting for our eleven year-old when he was airlifted to Southampton hospital. 23. Mrs W, also emerging from the helicopter, counted them methodically in her surreal and terrified state as they swarmed around the patient.
It had all started as a bog-standard, bright and breezy Sunday morning. Team Webb and another family staying for the weekend, had popped out for a bracing stroll to the beach, giving me space and time to go about my slow-motion getting washed and dressed routine...
Twenty minutes later, in burst Steve, the other dad, gasping and flustered after his half-mile run back to the house. My hasty assumption that he had popped back for a phone or a wallet was quickly cast aside when I saw his startled, pained eyes trained on me. He struggled for breath and to gasp words out as quickly as he could, but I soon understood that our son had been in an accident. And whilst I was repeatedly being told "he's ok", I sensed Steve was somewhat 'white lying' to keep me calm.
After all, as I later learned, our son had waited for one car to pass only to run out in front of the one behind. He took the impact on his hip, was tossed onto the windscreen, casually cracking the windscreen with his head on his way onto and over the roof, then tumbling to lie motionless in a ditch on the other side of the road. He was briefly unconscious, so remembers only the impact, then waking up on the grass, surrounded by concerned family, friends, bystanders and a seriously traumatised driver.
I could only look on helpless and sobbing as I watched the Air Ambulance lift my son and wife to Southampton hospital - a nine minute journey as it turns out. Our agonising one, following in the car, was closer to an hour. Being reunited with Samuel in hospital and seeing him conscious and whole was heart-burstingly emotional beyond anything I've ever experienced. A long hug from Mrs W too. Bonus.

Long story short, Samuel miraculously got away with deep cuts, bruises, some internal bleeding, shock and concussion. A combination I think of luck, a sensible driver and superb care from the paramedics, then the wonderful team at Southampton Hospital. He was out in 24 hours, and doing a phased return to school just ten days later. The outcome could have been so different, and we're all still coming to terms with it.
A post I put up on LinkedIn, in praise of the NHS front-line response, has gone a bit (a lot) bonkers. 4.5 million views, just short of 50,000 Likes. And one troll, long since hounded off. Hundreds of comments, some heartbreaking, many moving, about care received.

I know we are quick to complain about wait times for appointments, hours lost in drafty hospital corridors. That's more often than not about resources. But when the chips are down, bloody hell, there are some amazing people working in the NHS. Thank you, thank you, thank you.

Tuesday, 26 September 2017

(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.

Friday, 1 September 2017

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.

Saturday, 19 August 2017

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.

Thursday, 27 July 2017

A guest blog I wrote for the lovely

people at the MS Society

"Catheters? Oh alright then"

How help from the continence clinic finally gave Mark some relief from bladder accidents.
A lovely warm evening in 1995. A team outing, yay! I was living in France, and working for Disneyland Paris, as I had done since its 1992 opening. After a few glasses of champagne, a crowd of us hopped merrily on a bus.
During the journey I suddenly felt the need to pee. Not the slow, rising need everyone normally feels after a few drinks. No, a sudden switch. From no need at all to total desperation. Like a hand hovering ominously over a tap, about to turn it and start the flow. But not prepared to tell me exactly when.

Where’s the loo?

We only had a couple of minutes to our destination so I did all the usual stuff. Crossing my legs, biting my lip, staring out of the window. Staring at my watch, complete with Mickey Mouse image, as if that would get us there double-quick.
We pulled up at the entrance. Phew, made it! Where’s the loo? I had nervously edged my way to the front of the bus and was the first to scramble off. I took a few steps towards the restaurant entrance, trying to be ‘casual but fast’. And lost control. Not a little dribble: all that champagne, right through me and soaking my left leg. And worse, I was wearing cream-coloured trousers. One leg was now dark beige.
I ‘got away with it’ by getting myself seated ever so promptly, and later claiming I’d spilt a carafe of wine down me.

Bladder gurus

This, and other milder symptoms popped up on and off for years without me suspecting a thing. I thought the odd bladder accident was ‘normal’ and just an unspoken secret. Probably just among men. And anyway, I lived in France so I could usually pee anywhere and continue to ‘get away with it’. 
Skip forward to 2007. Back living in the UK and going through the MS diagnosis process, which for me included a urology consultation. Urologists are the bladder gurus basically. Mine was friendly with a relaxing manner. I had to pee into a special loo to test my flow; he had a good rummage around my prostate; and I had a scan, like the pregnancy one. I wasn’t pregnant, but Mr Urologist confirmed I wasn’t emptying my bladder properly.

Using a catheter

Soon after that my MS was formally diagnosed, and I first heard mentions of ‘catheters’ and ‘continence clinics’. I resisted for a while, cutting down on caffeine and alcohol. That improved things a little, but sadly I couldn’t stem the flow. Literally.
One day, after yet another incident, I took a deep breath and got myself referred to my local clinic. And after some more rummaging and pregnancy scans, I was gently persuaded that catheters were for the best.
The first time, with the helpful and expert guidance of a nurse, was awkward. Weird. Embarrassing. Icky. All that. But it didn’t hurt, honest. And the relief! I had totally forgotten what an empty bladder felt like. The next few times were tricky too. But soon it all became as routine as brushing my teeth. Though best wash my hands in between…
I self-catheterise three or four times a day now, following a strict cleaning regime each time to ward off bladder infections. A doddle in general. And each time, blessed relief!
About Mark: Mark lives on the Dunstable Downs in Bedfordshire with his wife Joanne and two boys, aged 11 and 6. Mark works as Head of Group Social Media for Dixons Carphone plc. He was diagnosed with relapsing MS in 2007. He is writing a book. Slowly. Visit his blog: