Moving on. Grief and relief in equal measure

Phew! Yesterday was my first day out of work in decades and I've survived. Coffee and pastry in bed courtesy of my gorgeous, hard-pressed wife. Bit of aimless internet browsing. Ordered some mouthwash and a boxed DVD set. A lot of chat and 'wowness' reacting to the overwhelming tide of support and love flooding in from social media. Twitter, Facebook both busy. LinkedIn bonkers, absolutely bonkers. 450,000 views when I last looked, and I only posted two days ago. Lovely, lovely comments to warm my confused and doubting heart. Confused and doubting because even yesterday, I really wasn't sure I had done the right thing. For me or for the family. More coffee by the sea to reflect and breathe. Multiple visits to the loo as a result.

My LinkedIn post was something of a eulogy to Dixons Carphone and how the team have treated me during my time there. After all, I strolled in twelve years ago oblivious to the fact I had MS. And rolled out in a wheelchair. All the time, from diagnosis through to departure, I have been so very well treated, and I won't forget it. Should be the norm, but it isn't....

I've been rather quiet on my blog, and indeed on social meeja, while I wrestled with the idea of leaving my safe, cosy job full of great colleagues and handy benefits. (Handiest of all, pay). Change is hard and scary at the best of times, but when I genuinely don't know what's next, it's just terrifying! Who'll pick up the phone to a bloke in a wheelchair? How long will my fuzzy brain stay not-too-fuzzy-most-of-the-time? This growing feeling of grief I have felt these last few weeks at the thought of leaving, and of missing colleagues. Will it go?

It's been perhaps six months of angst since it dawned on me - and Mrs W - that maybe I should move on. I was working harder and harder. A bit to prove to myself I was still functioning. A lot because I needed to just to keep up. Some point soon I was going to let someone down, and I was exhausted.

And 2017 didn't help at all in the whole process. It was far and away our 'Annus Totalus Grieficus'. Losing my beloved and beautiful younger sister. Leaving my own small hospital ward at exactly the same time, knowing that two brave, cheerful guys in it would soon be dead from aggressive cancers. Moving out from our dream home (and away from a dream group of friends) to kick-start a new existence by the sea. Experiencing a 'faux grief' when our then 11 year-old ran out in front of a car and was hit full on at 40mph. He was out of hospital the next day with only deep cuts, bruises and a bit of internal bleeding. A miracle, but the 'what if' hangs over us every single day, even now. And to cap it all, our kitten dying the very next week to bring everyone's trauma - especially our son's - flooding and wailing out... Oh, and then our gardener briefly disappeared down a gaping sinkhole that suddenly opened up. on our lawn Turned out to be an abandoned well, but made for a good story and summed up our year perfectly.

Grief, grief, grief.

So how do I feel now? Relief relief relief. Looking back, Dixons never put a jot of pressure on me. Hopefully because I was doing a half-decent job. Partly perhaps because they appreciated what was happening. The pressure was all me. Already I am getting back on an even keel. Now I have time to stretch and exercise. Moments to nap. And on the flip side, the phone-calls and emails haven't stopped with juicy opportunities to explore. So much so that I have pushed everything back to next week whilst I take it all in.

Leaving Dixons Carphone was a surreal and painful thing to do. Leaving colleagues I have kinda grown up with was awful. But now I know my body and the winning 51% of my befuddled brain was right. And Mrs W is always right. Onwards!

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.

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...