Finding my happy place again

"Life is good, just different", is my oft-repeated mantra. And it's usually true, honestly. Nothing Multiple Sclerosis has thrown at us has got me down for long. Well, maybe the excruciating nerve pain, a bit. And the phase when I was self-injecting every other day, each time basically giving myself the flu for 24 hours. Meh! I have a loving and much-loved family, a loyal, funny and indulgent set of close friends, and dashing good looks. Maybe not the last bit. At least my funky red wheelchair turns heads.

Right now I'm in a bit of a wobbly phase. I am yawning my way through bouts of fatigue, increasing nerve pain attacks and a more-rubbish-than-ever bladder. The less said about that last one, the wetter! A break in the mad bad weather has been a little helpful already. We Brits do love a sunny day or two. Even a week. But it's not so long before we start yearning for the rain that we're famous for, and secretly proud of.

A rain-dance of sorts is all the more important for many of us with Multiple Sclerosis. We are quite simply floored by heat, and just like another symptom, overwhelming fatigue, it is almost impossible to explain. "Yeah, me too," is the constant refrain. Hard to answer that, and harder to quantify. Every MSer is different, but personally on those 'lovely, sunny days', I can move less, I can think and concentrate less, I speak less and I try at least to sleep more. Despite spasming like a jitterbug.

I digress.

Last year we took a momentous decision to leave our dream home and start again by the lovely south coast. The area is beautiful, the schooling here has a great reputation and Mrs W was feeling an overwhelming need to be nearer her family as my condition deteriorated. I was fine with the idea, but really didn't think it through or prepare for it. Overnight I lost an accessible home, as well as my MS 'network' of health professionals and friends. And I stopped being in range of a pressurised 'hyperbaric oxygen' tank for my weekly dose of pure O2. My own family were also suddenly out of 'quick coffee' distance, just as we were all grieving the loss of my sister. All a bit surreal, all a little overwhelming.

I've had to come to terms with the fact my health is a notch or three worse than it would have been had we stayed. Nobody would be able to tell me by how much. No point looking back now, though that is what I have been doing. Slowly but surely, I have rebuilt something of a support network.
I've got a part-time marketing job with upugo.com that I can do from home. Great company, lovely boss.We have a regular stream of very welcome visitors to our abode, and to the brilliant pubs and restaurants overlooking the sea. We're having some great adventures. Too much fish 'n chips and calamari. Our two children are fine, with our youngest in particular absolutely thriving.

So what am I complaining about? Onwards and upwards! (And please keep visiting, lovely friends. You're my oxygen now!)

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!

(Un)Happy Birthday to me!

21st. 30th. 40th. Decent excuses to party, nothing more... I've never really worried about milestone numbers as my youth boogied and boozed its way into the distance and middle-age snuck wearily and grey-flecked up on me.

But I'm 49 as of this week. And the fact that in less than a year I'll be 50 is... is, well, it's weird. No matter that I've already got a disabled badge. That I can only manoeuvre my way around the house with a fetching NHS walker. That venturing outside requires a wheelchair and that I have self-catheterised for years. 50 will be a strange one. Probably.

I got seven cards, two text messages, seven 'phone calls. So far so normal for a 49 year-old. I also got 120 Facebook messages, seven messenger messages, five tweets, 49 on Linked In (where did that bizareness come from? I got none last year to my recollection...). How the world changes, eh? 'When I were a young lad,' etc etc, said in a croaky 49-year-old voice.

Anyway, am marginally grumpy about it all because:

- 49. See above

- Our plans for a nice day out were scuppered the night before by one of our two cats. Coco took a glancing blow from a car (we think) and did some nasty damage to his jaw. Mrs W raced him to the surgery and didn't get particularly encouraging signals from the vet. Hefty bill though.. A nervous night followed for us as we constantly woke to check if he was breathing. He was, and by morning he was bouncing round right as rain (albeit with some bone exposed and on some heavy antibiotics, he's not been given any all clear yet. We'll pay some more bills before that, no doubt.). The happy result of Coco being unexpectedly alive was that we were exhausted, and neither did we want leave him alone. A pyjama family birthday ensued.

- This was my first birthday without my sister, who passed away almost exactly six months ago. Hadn't expected that to strike me so hard, but it did. I'm learning that grieving doesn't follow any pattern you expect it to.

- This was also my first birthday in our new (rented) house. Not the most disabled-friendly. We'll fix that soon, but in the meantime, bah humbug!

- On the plus side and to end on a positive note I'm still here and still working. Statistically I should have been cast on the scrap-heap by employers bemused or uncaring about my MS. I work for humans, and brilliant ones at that. Yay!

- On a double-triple positive note, dear friends, also celebrating a birthday, are visiting this weekend. We can chocolate cake it in style, and try not to look Coco too closely in his rearranged face.

Grief is Like a Box of Chocolates...

So my wonderful, beautiful sister passed away last week aged just 46. She leaves behind a brilliant husband and two great - and I think resilient - boys, 10 and 11 years old. Her death wasn't unexpected, but she struggled on so very bravely at the end. Three weeks in intensive care, with the NHS throwing everything at her and trying every possible solution to help her pull through. Close, so very close, but tragically no cigar.

Ironically, I was for a while in the same hospital, at the same time. Just not in intensive care.I was having my own tough little stay, but paling into total insignificance, as I knew very well I was coming out. Twice I was wheeled one floor downstairs to say what I thought might be 'adieu'. I put on a brave face the one moment she was vaguely conscious, and the last visit I was sobbing and breathless with despair as I knew this was the last time I would see her alive.

I loved her from the moment she was born, and she loved me back. Perhaps mum would correct me, but I don't recall a single cross word between us. Ever. Even when I came back one day and found my Action Man dating her Cindy Doll. Even when the majority of my early girlfriends got the cold shoulder and the death stare because they - apparently - didn't reach the exacting standards required for her brother.

This picture dates from 1988. I drove through Europe with a German friend and my sis joined us when we reached our final destination, Greece. We had run low on funds and were surviving on a diet of olive oil, salt and tomatoes, together with stale bread for dunking, bought cheap or begged at the end of the day from bakeries. Her arrival and shameless fluttering of eyelids and cheeky smile won us endless free helpings of calamari and ouzo from beach barmen desperate to win her affections. None of them did.

I miss her desperately. I'm still sending her texts and when I feel brave, calling her mobile just to hear her voice... I'm crying at the most random of things. Today among other moments it was looking at the blue sky and wondering where she was up there. And Eva Cassidy played on the radio floored me.

Mrs W and I have always talked about two moments that shaped our life together irrevocably. A fire in 1999 that destroyed everything we owned. We were left with some window-boxes, their geraniums and the clothes we were wearing. And my diagnosis with multiple sclerosis in 2007. From the fire, after the initial shock, we learned that material 'stuff' matters so much less than we think. And that only photographs are precious. From my diagnosis we learned to live life to the full, to fill our days with happy memories and to love those special people around us all the more. I usually remember those lessons, though MS frequently manages to get in my way.

Fire? Multiple Sclerosis? Right now they feel nothing compared to the passing of a loved one.

What have I learned from my sister's death? I don't know. It's all too raw at the moment but for now I'm hugging my children more. And through the fog of grief, I'm feeling lucky to be alive, I'm determined to appreciate the little things, and to hang on to all the amazing, happy memories of life with a cheeky little sister.