Next Meeting

Latest News

PMRGCAuk Video: What is causing GCA?
Full 11 min version in PMRGCAuk In ...more

My Story

John Robson

In May 2013 following 5 months of feeling lethargic with extreme unbearable pains I was diagnosed with Polymyalgia Rheumatica. I've found having PMR is weird but at the same time wonderful. I've learnt so much about myself and others as I've climbed my own personal mountain. I haven't fought the illness ... I've worked with it. People suggest I'm lucky to be a man and only 51 years old when my new friend Polymyalgia came to visit my body ... and "yes" I was but there are other important things to consider before I went on my "personal expedition". I've found having PMR is like climbing a mountain. The Fire and Ice Team has a motto "Invenium Vium aut Facium" which means "I'll find a way, or make a way" ... which is true for Polymyalgia sufferers.

So, here I was, a 51 year old, very fit and active Fire Officer, ex-PE Teacher, who has run 22 marathons and climbed many high altitude mountains around the world, signed-up for the next London Marathon and due to go on another challenging expedition to Ama Dablam in the Himalayas. In my spare time I enjoyed challenging myself mentally and physically, always been involved with charity fund raising, Fire & Ice expeditions ... and raising a family. I didn't quite "fit" with the typical PMR sufferer! I'd just been climbing in the French Alps the summer of 2012, survived a small avalanche and mudslide where we got airlifted off the Mer de Glace glacier down to Chamonix. I damaged my right knee descending from the Aiguille du Midi, had my 4th knee op and by Oct/Nov 2012 was back to running Hadrian's Wall. By January last year I had some weird swelling on my knee which my physiotherapist called "sinister". This time I was on crutches for a good 6 weeks before my 5th knee op last March (54 weeks ago) - I'd already stopped driving and couldn't perform operational duties as a Fire Officer. Unknown to me I had a little visitor already in my body eating away at my upper body muscles.

After my op I just couldn't recover - in a matter of weeks I lost 2½ stone and went down to 8½st, all my upper body mass, lethargic, etc. At 6.30am on the 22nd April, when I should have been looking forward to the London Marathon, I said to Ruth, "I can't even lift my arms off my legs now!" It was so surreal - I couldn't operate a light switch, flush the toilet, hardly get out of bed and started using a wheel chair. I should have been running 26.2 miles around the streets of London!

After binning my GP, the new doctor immediately got me admitted to RAMAC (Rapid Access Medical Assessment Centre) at University Hospital of North Durham, and after 5 weeks was put on 20mg Pred. ... and so started a weird and wonderful chapter in my life. I took my medicine, slept in the afternoons, listened to people, had a wonderful summer in the sun ... and started to research PMR. And I realised I had turned into a 72year old lady overnight - you just had to laugh!

Over the summer months in 2013 three things helped me as I climbed my personal mountain - my biggest challenge yet. I reckon had a head start as I already had a very strong and fit body; I was a positive person - I never questioned "why" - I just used our motto of "Invenium Viam aut Facium". There was an acceptance as I worked with the condition not against it; and finally I had lots of wonderful, mad friends and a great supporting family. By September 2013 when my son Jack ran the Great North Run (GNR) for PMRGCAuk North East Support I'd attended Therapy Centre for a couple of weeks, started hydrotherapy and physiotherapy, maintained my PMR timelines, and started my health & fitness log. By this stage I'd met and listened to the advice given by the PMRGCAuk North East Support group. I focussed on working with PMR and what my body could do within the parameters of the condition.

What a weird and wonderful 18 months I've had since being diagnosed - I've followed the steroid reduction programme and am at 1.5mg. I run the 5km Parkrun's every Saturday morning proudly wearing my PMRGCAuk North East Support performance tee shirt. I've been to the Queens Garden Party, organised the Durham Raft Race and a massive Cabaret Ball, climbed in the Lake District and the Cuillin (Skye) ... and run the Great North Run in 1 hour 51 minutes! I'm looking forward to the future as I gradually climb towards my personal summit and regain my health for my retirement. I've had a weird and wonderful 18 months but if I hadn't got PMR I wouldn't have met so many wonderful people ... and I quite enjoy being regarded as a "phenomenon" (as recently quoted in Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide).
"Keep running free with a smile, folks"

Back to Our Stories

Valid XHTML 1.0 Strict Valid CSS!

Site by Desktop Solutions