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.


(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...
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.

Thursday, 20 April 2017

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

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