Every so often – and somewhat inevitably with what is a progressive disease – something comes along to knock you backwards and sideways and to the floor. I spend most of my Multiple Sclerosis life comfortably in an ‘acceptance’ phase. I laugh, I love, I have silly adventures. I eat cake. I hang around my wife like a puppy, hoping against hope for a sloppy kiss. Mwah!
But right now I’m back to ‘floundering‘. Is that an official grief stage? Well that’s where I am in any case, and I’m feeling a little beaten up. I am now a rather bemused operator of a ‘suprapubic catheter’. I’ll tell you a story to see if that cheers me up. This fable is based on an entirely fictional character. No connection to me. At all. Nope. Definitely not, a source close to me confirms.
Once upon a time (1992), a desperately handsome but disappointed Englishman had run away to a land far away (Marne La Vallée, France). Rumours abounded that he had been overlooked in his bid to be the new James Bond. He really didn’t like to talk about it. Pierce Brosnan, pah!
Using far more charm than that scallywag Brosnan ever had, Mark (a fictional name, obviously) blustered his way into a fancy job at a brand new Disney theme park. He would be looking after the rich and famous as they visited this magical new place full of fantasy, fireworks and four foot mice… In later years he never name-dropped Gloria Estefan, or Michael Jackson. Ever. To this day he refuses to mention it. Indeed, such is this made-up person’s tact that whole hours, nay afternoons, can go by without a story from his – apparently – illustrious and pretentious past.
That glorious year, Mark – when he wasn’t hanging around with celebs like Clint Eastwood whom he still refuses to mention – dutifully kissed many many frogs in his attempts to find his princess. Sometimes, often even, he would get rip-roaringly drunk to help him endure the hardship and perils of this quest. His relentless, courageous search would continue until 1999, when he finally located the wonderful, the magnificent, the stupendous Joanne. Again a fictional name, and frankly far too beautiful to be a real person.
Back to our beer-swilling hero – who never mentions meeting Keven Costner – in 1992. Concealed by the rollercoasters, the hugs with Tigger and ‘le beaucoup de snogging’, an evil disease called Multiple Sclerosis was making its first forays into Mark’s life. Pins and needles first, the odd jerky leg movement. Then a literal torrent of bladder weirdness. Zut alors!
But all was fine really. For after all Mark was young, and a bloke and good at denial. He could blame Long Island Iced Tea, wine and excess coffee. And 90s France offered up plentiful street corners, trees and gate posts for sneaky and not-so sneaky wee-wee ‘visits’. La France of that era smelt gloriously and pungently of fresh bread, Camembert, garlic, and pee. Mostly mens’ I think.
Years passed. Mark’s ‘zizi énorme et incroyable’ (that’s French for willy, with a bit of artistic licence to enhance the story), got leakier. It was whipped out far too often for anyone’s comfort, even for the indulgent but increasingly weary Princess Joanne. Our hero took to wearing black trousers and carrying spare underwear. Just in case, and totally fictional, you understand.
2007. Mark was finally diagnosed with Multiple Sclerosis. He and his princess now lived not-so-far-away. Bedfordshire, England to be precise. Life was good. Love-making was plentiful and joyous enough to deliver two children. That’ll be twice then.
2011ish. Visits to the loo – or an English tree, or a road siding – were just getting a little bit silly. Time for Prince Mark to grow a pair, to swallow them (mixing metaphors here), and to visit a Continence Clinic. Much intimate examination ensued, and young Mark – for still he was 21 – felt a little less princely…
In his quest for ‘dry-dom’ and a return to past glories – and finally achieving a little less denial – Mark was trained up in using ‘intermittent catheters’… Shoving a tube up his willy and draining his bladder fully. Charming. Lovely. He almost passed out first time, but soon it became a doddle, and our hero (avec le grand zizi) won a few years’ respite.
Sadly, his bladder tale had no happy ending. Self-catheterisation and, ummm, special pants can only do so much. 2020 arrived. Nothing much was happening in the world that year. A chat, a phone-call, some soul-searching and some worrying in Lockdown, and a decision was made: Prince Mark of Dunstable Downs moved to ‘Bladder DefCon 3’.
The NHS whirled into action, as did a small whizzy saw just below young Mark’s belly button. Some pain, some blood, some gritting of teeth and all of a sudden a tube was now permanently protruding from the handsome man’s tummy. And a wee bag. So to speak.
I have been trying to write this total fable for six weeks now. And six weeks on our made-up hero has kinda got used to the whole malarkey.
He can stay fully hydrated at last! Drink it in, pour it out… ?
If you lie him down first, he can get tiddly for the first time in years… Drink tequila, sing songs, pour it out. (If you don’t lie him down he will fall over and hit his head, blaming his MS for the accident).
Famous last words, but no bladder infections to date.
He doesn’t run (roll) off to the loo all the time. He just empties out from a tap. Which is weird.
A wee bit tender down at tummy button level. Probably some of it psychological.
Because Prince Mark, our invented hero, hasn’t managed any bladder infections, he has had no morphine opportunities. He does love a good morphine dose.
He depends on others – including his gorgeous princess – for help on bad days. MS is tough for loved ones. Even the stoic, amazing, beautiful types.
He is dreading the catheter changeover. A district nurse will visit in a few weeks, yank out the existing gadget and insert a new one. He is cringing in writing this. Luckily, it is all made up as we know.
His naked modelling ambitions have taken a turn for the worse, given he now has two dangly bits. One of them right down to his ankle! Maybe there’s a niche website out there?
And we all wee’d happily ever after…
A rather more detailed and grown-up description here: