Below. I’d like to get it published, but just writing it has really helped me comes to term with being PPMS. Thought it best to reveal something about myself. Any thoughts, criticisms or suggestions you might have would be gratefully recived. Many thanks;
"When the pint glass smashed on the stone floor of some gastro pub one early spring evening, splattering various posh frocks in the process, I knew something must be done. I had only had two sips of beer, was completely sober and engaged in a slightly stilted conversation with some chap about the England cricket team. The glass just disappeared from my left hand, and the ensuing noise generated unwelcome attention and lots of ‘how many’s he had, bit early isn’t it?’ looks.
I eventually toddled off to see my GP in November 2012, roughly six months later. I then catalogued over six years of symptoms including problems balancing and walking in a straight line, stiff leg, keep tripping over and knocking into stuff, climbing stairs becoming a nightmare, needing the loo all the time, problem raising my left arm above my head, occasional vertigo etc… Yep, 6 years of this and not one GP visit, but this was the first glass smashing incident and I was not keen for a repeat performance. I know plenty of doctors and surgeons, all of whom advised me politely that this is all part of getting older, and my line of work processing insurance claims means I know too much about the travails, aches and pains of the ‘worried well’. So I thought why bother the GP when I can just do more stretches and let nature take its course. And like most young blokes I have an aversion to going to a GP surgery and would rather just battle on than fret about anything sinister that might or might not be happening to me. Things never got better, cue 3 different private physiotherapists who all did their best, but ended up scratching their head and suggesting I see my GP. In the meantime my wife, who works in a hospital, finally caved in to my moaning and arranged an x-ray of my hips, as she suspected this might provide the answer. It revealed mild osteoarthritis. Hurrah, I said to myself. Now I know what the problem is I should just stop worrying, get back down the gym and do even more stretches, perhaps take up Pilates. Eat more fish, take supplements, that kind of thing.
Except that having hip arthritis doesn’t make glasses slip from your hands or your legs to spasm all night so that you can’t get any sleep. Or make it impossible for you to run for more than 30 seconds (I used to run marathons), jump or stand on one leg without falling over, or pull so hard with your right hand when on the rowing machine that both sides of you go all numb. Nor does arthritis, or any other middle-aged bloke generic joint pain, mean that doing up your tie, buttons or shoelaces becomes impossible, and that you keep having to apologise when out for dinner because of ‘issues’ to do with cutting food.
A four month round of GP and hospital appointments, MRI scans, lumbar punctures and interminable literature searches finally confirmed what I had I recently come to suspect: primary progressive multiple sclerosis (PPMS). That makes me one of the 10% of MS sufferers who have this sub-type of the condition, and one of the 0.0001% of the UK population to have it. Fifty/fifty male-female split, age of onset typically 35-50. So I’ve probably had it since I was 36 even though I was not formally diagnosed until I was 43. As the name indicates, the condition gets progressively worse with no drugs or medication yet available for cure. It’s all about symptom management with us 10%ers, rather than cure, meaning we start to rely on certain types of pills so that we can sleep, walk and eat. I’d be a wreck without baclofen!
But what still troubles me is the feeling of isolation. As any MS sufferer will tell you, the ‘take care, see your GP if anything new happens, and I’ll see you for a follow-up in 12 months ’ line given by most Consultant Neurologists on newly diagnosing someone does leave you feeling very alone. Nearly one year post diagnosis I have yet to meet in the flesh anyone else with MS, let alone PPMS. Online stuff is great, especially for practical advice, but it’s not the same. I’ve heard lots of ‘friends of friends’ stories about people with MS, usually involving youngish females who keep blacking out or have difficulty speaking.
In other words they belong to the other 90% of MS sufferers, ‘mostly’ women under the age of 40, with Relapsing Remitting MS (RRMS): as the name implies they can be fit as a fiddle one week, bed bound the next. Jack Osborne is a celebrity example and the media tends, quite understandably, to portray this sub-type as the norm.
Which is why being a sporty bloke in early middle-age does not tend to fit into the public stereotype of an MS sufferer. This sense of otherness I am used to, as being a house husband in your 30s looking after two young children whilst being married to an Orthopaedic Surgeon hardly makes me an everyman either. But warming on the Australian beaches this Christmas (heat I crave, cold I can’t tolerate anymore, yet another symptom) led me to the conclusion we are all, as MS sufferers, totally unique. No one case of the illness is the same and whilst I might still be able to drive and do some stuff at the gym seven years after my symptoms started in earnest, there will be others whose glide-path to severe disability has been more rapid and pronounced. I’ve been moved by stories of folk who’ve found themselves needing a wheelchair only two years post diagnosis, and I’m not sure I’d be able to cope with the sensory hell that RRMS sufferers have to deal with.
We MS sufferers all have weird stuff going on in our brains. Every time I’m on a train platform and the tannoy announces delays caused by signal failure, I allow myself a wry smile because that is basically what the disease is, regardless of subtype. I often try to picture my big lump of grey matter re-configuring itself to produce a new me because, in all honesty, I’m still in mourning for the old me. Anger wells up every time the man goes red when I’m only half-way across the road, when I can’t even manage being goalkeeper in a kickabout with my son, or having to avoid concerts, plays and other events because I worry about needing the toilet all the time. All the while, friendships get neglected and I feel increasingly trapped. Even trying to return to my old profession of teaching was not possible; I couldn’t even hand out bits of paper and kept tripping over and knocking into desks, getting increasingly paranoid about creating an ‘incident’. Yet more reminders that I am now a very different person.
So, slowly but surely the gremlins inside my head are chiselling the old me out of the grey cranial matter and I now speculate about what sort of raw material is going to fill the gaps. A more reflective, rational and intellectual being, I hopefully predict. Less testosterone, perhaps a dash more empathy. A chronic illness affecting your movement naturally creates a laser-like focus on the workings of your mind; it’s just as well that I’ve always loved reading, history, politics, religion, economics, arts and culture more generally, as these passions can’t be taken away from me (yet). Nor my sense of humour, which is now so deeply ironic that most Americans would probably find me just plain rude.
I’ve no idea what the future holds but, hopefully soon, the new me will finally blossom along with some new friends and others who can clearly relate to what I am, and have been, going through. We could meet up for drink. I promise not to use my left hand…."
Clucker Pigeon, January 2014