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.

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?

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.

(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.

A guest blog I wrote for the lovely

people at the MS Society 

https://www.mssociety.org.uk

"Catheters? Oh alright then"

Posted on 27 Jun 2017 at 6:50PM by Mark Webb

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: onemanandhiscatheters.blogspot.co.uk

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.

One Man and his Catheters: Oh Flip. PIP... The document of doom...

One Man and his Catheters: Oh Flip. PIP... The document of doom...: It had to happen eventually... I've been dreading it since it was announced, and a hefty envelope finally crashed down on our doormat, t...

One Man and his Catheters: Matt Dawson, me and Motor Neurone Disease

One Man and his Catheters: Matt Dawson, me and Motor Neurone Disease: Matt Dawson (ex-England Rugby Union captain, British and Irish Lions star, sparkly Strictly Come Dancer, long running captain on TV's Qu...

One Man and his Catheters: My, oh my, oh MRI...

One Man and his Catheters: My, oh my, oh MRI...: Bzzz, click, whirr, tock, bzzz, bzzz, silence. Click, click, Pacman-like beep, click, bzzz, more bzzz. Silence. Long Bzzzzzzz. Silence. Then...

One Man and his Catheters: Blue Lights, Morphine and a Resuscitation Room

One Man and his Catheters: Blue Lights, Morphine and a Resuscitation Room: OK, so there's me booked to speak on Wednesday to 500 health professionals at the thrilling 'Infection Prevention and Control 2017&#...

One Man and his Catheters: On Porridge and Patients…

One Man and his Catheters: On Porridge and Patients…: So my escape from hospital was brief by any depressing standard. Out Saturday evening in time for a delicious Thai takeaway, shared with ...

One Man and his Catheters: Death sentences and Life sentences. The blue pill ...

One Man and his Catheters: Death sentences and Life sentences. The blue pill ...: Hurrah! I'm out of hospital after a total of 13 nights fighting a bladder infection and temperatures twice steaming scarily over 41 degr...

One Man and his Catheters: Carer creep - The other side of the coin

One Man and his Catheters: 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 m...

One Man and his Catheters: Grief is Like a Box of Chocolates...

One Man and his Catheters: 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 resi...

One Man and his Catheters: And they all lived differently ever after

One Man and his Catheters: 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 ho...

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.

On Porridge and Patients…

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

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

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

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

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

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

(His bonkers breakfast order still winds me up though) 

Blue Lights, Morphine and a Resuscitation Room

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

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

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

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

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

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

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

My, oh my, oh MRI...

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

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

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

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

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

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

Matt Dawson, me and Motor Neurone Disease

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

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

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

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

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

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

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

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

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

Oh Flip. PIP... The document of doom...

It had to happen eventually... I've been dreading it since it was announced, and a hefty envelope finally crashed down on our doormat, throwing up dust, desperation and a smidge of depression. I'd been unhappily sitting in the queue with all my other disabled 'colleagues' in the UK, waiting to receive the 'document of doom' (said in a deep, echo-y voice). And now it's my turn to fill in a scary monster of a 'Personal Independence Payment' booklet to justify my disability to the ever-so-caring powers and bean-counters that be.

Once upon a time I was awarded a modest 'Disability Living Allowance' (DLA) to help us with the cost of living with disability. Gadgets such as a travel scooter to stay relatively mobile. Odd-sized shoes to fit my different orthotic foot support thingies, (Size 14 on my left foot. That's big.You know what they say...). Ready meals because I can't safely prepare anything more than a sandwich. Endless trips to hospitals and treatments. Drugs and vitamins not on prescription. Higher insurance. And and and, etc etc etc... This 'DLA' was supposed to be for life. Like too many other conditions, Multiple Sclerosis has no cure after all, and is generally progressive, so why shouldn't it be permanent?

The four-weekly payment was never enough to cover the extra outgoings needed for our family in dealing with my condition, but it was (is) extremely welcome. And whilst I'm still in a job, it has allowed us to put extra cash into my pension, knowing that one day soon, MS will summarily decide I can't work. And that in retirement, I'm likely to require increasing support, care, maybe even hospice time... I'm lucky, so lucky to still have a job and have understanding employers and bosses at Dixons Carphone. Many don't have that 'luxury', and DLA is their only lifeline.

My DLA (awarded for life remember) is now being withdrawn. I have to apply for it's replacement. PIP. PIP has been dressed up as a way to recalibrate the system and to ensure those who really need support get it. But guess what? It also arbitrarily redraws the boundaries and measures used. It saves the Treasury a teenie wedge of cash, but of course shows what a jolly good, determined job is being done in reducing the Welfare budget. And plays nicely to the audience and certain media convinced that we're all scroungers, a waste of space, an awkward, embarrassing blot on the landscape.

As the process goes on and more of us receive that lovely envelope, less people are receiving PIP payments. Most of them thoroughly deserving of, and desperate for, support. And a life. Many of those that have been stripped of their 'permanent' DLA payments are now marooned at home without any means of transport. Cutting back on heating. Or food. They're isolated, depressed, suicidal... Decisions appear to be random, or based on a tightened noose of tickboxes that need you to be really, really disabled instead of just really disabled.

Enough whining. Now I need to work my way through the questionnaire, laying myself bare with my MS Symptoms. To a pen-pusher with no medical training. Can you dress yourself? Can you wash yourself? Which bits? How far can you walk? Can you prepare complicated meals? Simple meals? How do you manage going to the toilet? Any disasters? Do you cope with social occasions? It really is great fun trying to show off about your disability, outlining all the ickiness we live with.

The 'document of doom' (said in a deep, echo-y voice) is complete...

#multiple sclerosis #chronic illness #disability #MS Life

Car Crash Multiple Sclerosis

So this week I had my first hand control driving lesson. I survived, as did the car, my instructor, and Dunstable. Hurrah! After 30 years of 'normal' driving - which Mrs W would tell you was pretty crap anyway - it's a very counter-intuitive way of getting around. I'm pretty sure nature didn't plan for this. I can only pray I get used to it.

In my instructor's version at least, a big handle - about the size and shape of a brass door knob - is attached to the steering wheel, and I use my left hand to steer with that. On the right hand side is a push/pull mechanism. You hold onto it constantly, pushing to brake, pulling to accelerate. A tiny switch on top of that lets you indicate. Perhaps I can pretend it's a bit like James Bond's eject button?

I confess I haven't yet got full control of the braking. It is overly sensitive, so more often than not as I pull up at a junction or a roundabout, I pretty much emergency stop. Or I totally emergency stop. Oops... And given I'm constantly holding onto the push-pull thingie and the steering wheel, I haven't yet figured out how to scratch my nose, or how to wave thanks to other drivers. May have to bribe passengers to do that.

I was already considering trying out hand controls before being forced to, knowing that the time was drawing nigh, with my left leg useless, and my right leg quickly heading that way. I't's been three or four years I've only been able to drive automatics, but my hand was forced - pun intended - by a whopper of a prang I had in the Autumn, Nobody was hurt thank goodness, but I wrote off the car in front of me (their air bags blew too), while the car beyond that got a small dent. All my fault - a lapse of concentration as I passed an interesting-looking pub. But there's a part of me that suspects I could have emergency stopped if my right leg had been that bit stronger...

There's a lot of inward sighing and harumphing as I take this on board, but just as when I finally started using a wheelchair and a mobility scooter, I know the cringe phase will pass and actually life will be more comfortable and safer for me and those around me. And just as with the chair and scooter, I'll actually be snatching back some independence from that dastardly MS. My shrinking world will flourish again just a bit, maybe only for a while. And I'll wish I did it yonks ago...

Four to six lessons apparently, then an assessment (yikes). So if in the next few weeks you see a dashingly handsome middle-aged man nervously frog-hopping a learner car down Dunstable High Street... Best give me space.

#multiple sclerosis #chronic illness #disability #MS Life

A 'meh' week at the MS office...

A mixed milestone in my surreal disabled world this week. Mixed because I should have caved in and done it months ago. I finally took delivery of a 'walker'. Once upon a time, it would have been a Zimmer frame but nowadays, they're plastic, they have wheels and they have brakes. Rock 'n roll, eh...

It’s another icky marker in the ‘progress’ – what an ironic way to describe what is happening – of my illness. Every one of these moments knocks me back a bit, and some blows are bigger than others. In no particular order: a new symptom. First time in a wheelchair; first walking stick; crutch; two crutches; first use of a mobility scooter; first catheter; first fall in public; first fall when alone; losing my permanent driving license; moving down to a four-day working week; self-injecting daily; booking assistance at an airport; first ambulance called out; first hospitalisation. Quite a lot of body blows and smacks round the chops when you add them up.

My walker, and another one I fought off for far too long, 'submitting' to a walking stick, were very much blessings when I finally accepted the inevitable. Partly because I was suddenly less of a danger to myself and others, bouncing as I was down corridors and grabbing random bits of furniture, and occasionally people, like I'd had two bottles of wine and a vodka chaser. Mostly though, because your average human being recognises the clear signal I am disabled and is so much more understanding and considerate. Sometimes it can get too much – I still want to do everything I possibly can for myself – and I certainly don't want sympathy. But from day one I appreciated the mini 'parting of the waves' as I hobbled down the street, the opening of doors, carrying stuff on my behalf etc. Hey, I never have to clear the dinner table any more, hurrah! Silver linings and all that.

Sometimes these ‘milestones’ are MS developments or MS-related incidents. Sometimes they are seismic decisions we reluctantly take because of MS. Whatever they are, these days are the tougher ones to deal with, and the biggies can take a long, long time to get over.

Sometimes I sneak a little cry, often I go into a slightly morose shell for a while, but at some point, I get used to my new level of disability. I get the hang of whatever new gadget or medicine or lifestyle change is forced on me, and settle into a ‘new normal’. And that can go on for weeks or months. Sometimes I opt for some counselling to help wade my way through. You can hardly forget about the disease, but you learn to cope with its new ‘level’ and carry on with life. Adapt and overcome, adapt and overcome.

Then, wham! Multiple Sclerosis decides you are far too comfortable with this level of chronic illness. “Here, have a new challenge to deal with. See how you like that!” it cackles. “I might leave you with this new conundrum for a day or two. Probably longer. Maybe forever. Ha!”