Recipe for living life to the full with RA

Good relationships with your healthcare team, medication, exercise, stimulation of the mind and lots of laughter; One man’s thoughts on how to live a full life with RA. 

Adrian Essex: As long as I can remember, I’ve been sporty. At school I was usually in the team, running or football or whatever. As a young man I played rugby and all through my middle years (1973 – 2002) I cycled to and from work. In my fifties, I took up running, some days in place of my bike ride to work. So the symptoms of rheumatoid arthritis in 2014 were very unwelcome. 

I am also a very bad spectator, having only on rare occasions been to watch a Test Match or top-class rugby, and never, I’m pleased to say, have I ever paid to get into Association Football. I’ve had a bash at many sports, and my favourites would be rugby football, skiing and athletics. All those years cycling to work in the West End and City of London must have helped keep me fit, and luckily I managed to survive the traffic. So the thought that perhaps I was about to be crippled by failings in my joints was not a pleasing prospect. 

The first big clue there was a problem came on a summer evening at a concert given by the Crouch End Festival Chorus in Southwark Cathedral on 17th June 2014. Both my hands swelled up and turned blue. I was scared witless. I thought; next, they’d go black and drop off. Looking back further though, there had been minor symptoms in May and June – discomfort in my hips and shoulders mainly, and perhaps the few months of dry eyes (Sjögren’s syndrome?) whilst wearing contact lenses were related. So I set about getting the NHS to work on my behalf. 

I’d had a fair bit of recent experience with the NHS, though not for myself, so I knew the drill. The NHS moves at its own, glacial, pace (though glaciers are reputedly speeding up). Don’t try to rush it, and do follow its protocols. My GP duly referred me to a rheumatologist at the local hospital, and blood tests and x-rays followed. Of course, my own investigations had me suffering from a terrifying range of diseases all of them entirely attributable to the internet, the famous Dr Google! I think lupus and gout were my particular favourites. But it was actually not very long before I got a definitive, accurate, not based on the internet, diagnosis of rheumatoid arthritis. I had all the markers and based on those alone; the prognosis was for the trickier end of the scale. On 1st August, I was given a shot of steroids in the bum, and things started to improve. Well done the NHS. 

Along with the steroids, I was given advice and other drugs. To start with, I was offered methotrexate, but before I was able to start taking this, the team at the hospital must have had a conflab and offered hydroxychloroquine as perhaps a less scary alternative. This seems still to be working. Well done the NHS. 

I keep a diary of incidents of joint pain. Fortunately, these incidents are, so far, with treatment, mild and not too frequent. Phew. Well done the NHS. 

The major advice I was given by the rheumatologist was to keep up a regime of exercise, which is perhaps slightly counter-intuitive. On the one hand, you might think that if you’ve got dodgy joints, you should give them a rest, so as not to wear them out, but on reflection, you realise that iffy joints allowed to atrophy will pretty damn soon stop being iffy and become completely useless. So I do still exercise—yoga, decathlon and cross country, mainly. And I cook, from one of those companies that deliver a box of ingredients and three new recipes each week. So nutrition is taken care of. And I write odds and ends like this on a blog. So mental stimulation is taken care of. And I do like repeats of Dad’s Army, and watching minor celebrities on television eating unpleasant animal’s private parts to a commentary from vindictive Geordies, so laughing out loud is taken care of. And I’ve tried internet dating, so some other personal needs are taken care of too, thank you very much. 

So that’s probably it. My recipe for living life to the full is: 

  1. accurately (accuracy is very important) identify the problem 
  1. strike up a good relationship with a capable set of medical practitioners. 
  1. do what you’re advised (mainly) 
  1. get lucky with the treatment 
  1. get on with it – carpe diem 
  1. laugh out loud every day – nil desperandum 
  1. write things with lots of Latin tags in – quod abundant non-Obstat (what is abundant doesn’t hinder; It is no problem to have too much of something.) 

Of course, such a recipe does not arise out of nothing. As well as the immediate rheumatoid arthritis problem, there’s the rest of my life which has influenced all this. The context and the inspirations that have led me to be where I am today. These include inspirational friends, the benefits of Yoga, my ambition for a touring holiday on my far too big motorcycle and especially my family. An amazing mother of 90 who I struggle to keep up with whizzing around Morrisons and my three daughters, one of whom has just produced grandchild number 1, all who spoil me and look after me. Oh did I mention a lady friend, say no more, nudge, nudge, wink, wink!