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.

Thursday, 20 April 2017

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

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One Man and his Catheters: Blue Lights, Morphine and a Resuscitation Room

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