Monday, 27 February 2017

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!

Friday, 17 February 2017

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...

Thursday, 9 February 2017

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.