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 

https://www.mssociety.org.uk



"Catheters? Oh alright then"

Mark
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

Friday, 14 July 2017

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.

Friday, 9 June 2017

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...


Friday, 19 May 2017

"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)

Monday, 8 May 2017

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.

Sunday, 30 April 2017

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.