Drumming, Dodgy Digits and Doctors

Living with arthritis isn’t always much fun.  Being a drummer with active rheumatoid arthritis can be a bit of a challenge!

Well, I’m calling myself a drummer as if that’s all I do – it’s not.  I work full-time, I’m married with 3 kids, mortgage, cars and pretty much everything a 40 something guy with a young family has.  I play in a covers/party band, I sing backing vocals, I do sound and I carry a lot of gear!  If I could make drumming pay, I’d do it full-time.  That was always my dream as a teenager.

Arthritis, however, really cocked up any chance I had of making it as a pro, but it’s not been impossible to continue playing (and keep improving too) it’s just been difficult!

I’ve played drums since I was 11.  I started playing side drum with the Boys Brigade and quickly became their lead and solo side drummer in the bugle marching band.  That was a great introduction but rock drumming was where it was at for me!  I credit Stewart Copeland and Phil Collins as the people who really taught me how to play.  I spent months with my small kit, in the front room of my parent’s house, playing along to The Police and early Genesis, learning technique and making a bloody noise!

Then my Dad converted the attic and put me in it.

I joined my first real band when I was 14 and played my first gig when I was 15.  Education took a backseat and the dream of making it big took over!  I joined more bands, did studio sessions and just had a blast for the next 4 years.

When I was 19, the middle finger on my left hand swelled up quite unexpectedly.  I thought it was the result of trapping my hand in the bonnet of a car I’d been working on, but I didn’t remember it being sore when it happened.  I started to wake in the night with an elbow, knee, wrist or shoulder in excruciating pain and sweating like crazy.  I’d fall back to sleep eventually and wake in the morning with nothing wrong.  My GP was less than helpful.

Over the next 18 months, these nocturnal episodes happened occasionally, I didn’t really think much of them and visits to the doctor became pointless.  Then, 3 months after my 21st birthday and after I moved to London to work, painful joints started to disturb my sleep almost every night.  This became so bad that I tried not to sleep.  During one of these fitful nights, I had a vivid dream that I still remember.  In the dream a doctor told me that I had rheumatoid arthritis.  Three weeks later, a blood test confirmed it.

A confirmed diagnosis opened the flood gates, as if it gave me permission to be unwell and 2 months later, I had become very ill.  My weight had dropped to seven and a half stone, I was in an isolation room on the orthopaedic ward in Lewisham Hospital and was suspected of having AIDS.  This was 1987, little was known about HIV, medical staff were paranoid, the doctors couldn’t believe that just arthritis had made me this ill, all of my used bedding was incinerated, people gave me a very wide berth!  I KNEW I had little to worry about but the blood test to check their diagnosis took 8 days and, with plenty of time on my hands to think about people and stuff, I went a bit mental!  When my doctor turned up to whisper the result of the test – negative – I fell apart.  I had wound myself up to the point of being convinced (and scared) that I was going to die.

That was my darkest hour.  There have been many dark times since but none as intense as that time.

The whole experience was defining.  I found myself.  My wife doesn’t really believe in this sort of spiritual thing but does admit that she’s never had that kind of epiphany.  In a moment, I understood who I was, what my place in the world is, how I fitted and that I would never allow myself to be defined by my disease.

I have been comfortable in my own skin since that moment.  I can deal with what I have, I push myself to be active, to do more, improve more, be great at some things or at least good at most things.  I fill my life with stuff that stretches me and I will never give up!

People have often said to me that I’m so positive about how I deal with my arthritis.  That’s mostly true (how else would you deal with a chronic illness if it wasn’t with a gargantuan amount of positivity:  if you don’t laugh you’d cry, etc, etc) but it’s not completely true.  I have had loads of crappy times, ‘why me’ times, depressing times, I’ve been scared at times and I’ve given my family a lot to worry about!

Like the 4 operations I’ve had on my left hip, the serious flare up I had in 2005 around the time my twin girls were born and I was barely able to help my wife with all that work, the meltdown I had in my consultant’s room when I felt I couldn’t take any more, the horrid, pus squirting, necrotising infection I had in my wound after my last hip operation, which could have been extremely serious (and needed even more surgery) and the times I’ve had to spend in hospital and away from work.

My goal in the last 7 years (yes, they’re 7 now and my oldest is 11) has been to get back to the state I was in before 2005, when I was in remission.  I do feel that I’m only just getting better now and I believe that it’s mostly down to what I eat!

I’ll tell you more in a mo.

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