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...
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...

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.

Monday, 30 January 2017

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

Friday, 20 January 2017

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

Friday, 13 January 2017

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!”

Saturday, 7 January 2017

On Kadeena and cotton wool

The amazing Kadeena Cox. In 2014 she was diagnosed as having suffered a stroke. Not so long after that, she was diagnosed with Multiple Sclerosis. A national-level athlete beforehand, she's now a Paralympic, trailblazing legend.

Kadeena won Rio gold in two very different disciplines - cycling and track. A silver and bronze in relay events too. Holds some world records. Flag-bearer at the closing ceremony. Awarded an MBE. Shortlisted for Sports Personality of the Year. Appeared on a celebrity version of Robot Wars. She won that too. Also appeared on Celebrity Mastermind. Flunked her specialist subject on that one. (just goes to show you can't be perfect at everything. Mind you, serves her right for choosing Arsenal FC as her topic). Thoroughly lovely person, rarely without a smile on her face. It looks to me like she's having the time of her life, seizing every opportunity that comes her way.

Despite all this, she stayed - in relative terms - below the public radar. Then she announced she was joining the line-up for this year's 'The Jump' on Channel 4, where celebrities train for and compete in various winter sports disciplines, and at least in previous series, some of them get injured along the way. And all hell broke loose.... Her elite status sports funding was withdrawn for the duration of the programme. Various experts and celebrities piled in to question her wisdom in taking the 'risk' of competing in The Jump.
Kadeena gets more kudos points from me for sticking by her guns and for her frank response. "Imagine living life as a ticking time bomb," she tweeted. "MS has changed my outlook on life, so I'm gonna enjoy skiing."
"Go Kadeena (MBE)!" I shout...

Multiple Sclerosis is the most common disabling neurological condition in young people in the UK. There is no cure. Whilst it won't kill us, (it may shorten our lives a little, but hey...), from the moment we are diagnosed our life is one long stream of uncertainty. How fast will our condition progress? Nobody knows. Which symptoms will I develop ? Nobody knows. There's a huge smorgasbord of symptoms MS can choose to dole out to us after all. They call MS the 'Snowflake Disease', because no two of us are the same. Kadeena could have years, maybe decades ahead of her without any significant worsening of her condition. But there's a chance she won't. Time to seize the moment and live life to the full.

I'm a year or twenty older than Kadeena. I'm in a wheelchair most of the time, and can hobble a few wobbly yards on crutches when I'm not. I have a huge bucket list of things I still want to do, to achieve. And a sadder list of regrets that I try hard to bottle up. Things I wish I had done whilst I was able. Other things I wish I could still do but are now denied me. 

Please don't wrap us in cotton wool. We are still desperate to live, to laugh and to love. Lots of us still have ambitions. Maybe radically different ones because of mobility, pain, fatigue, fuzzy thinking, vision issues. Whatever. I know my limits, I know the boundaries, though I push against them as best I can.

Kadeena Cox shouldn't be denied this latest, fabulous, slightly bonkers opportunity. I have never watched 'The Jump', but I'll be tuning in this year.