Malcolm had experienced symptoms of vasculitis over a number of years but put it down to simply getting older. He was eventually diagnosed with vasculitis manifesting as mononeuritis multiplex.
It was ten years ago in September 2010 that some of the signs started to appear. I had been conscious of losing energy for some time but put this down to getting older. I was 57 years old and had never before experienced ill health.
In the summer of 2010, Amanda and I moved to the country for a change of lifestyle while we prepared to develop our international employment law service. There followed a period of glorious weather, and we began to relax and enjoy the peace and quiet of the countryside. We had long country walks and began to feel and look fitter.
However, there were clues that things were not right. I was losing weight. I had heavy night sweats. My feet were changing shape and beginning to claw. Heading out for a walk one day I realised that my left foot was starting to drag. On another occasion while walking up a hill my legs simply ceased to function and I was unable to move. One night my left foot collapsed. Visits to the doctor produced no diagnosis and googling symptoms produced no peace of mind. With hindsight it seems likely that the condition had been grumbling away in the background for some time.
Overhead the geese came and went and gradually the home that had been so idyllic during the Indian summer turned into the coldest property imaginable during the coldest winter in 100 years. Then the oil for the heating ran out and the lorry bringing a fresh supply was prevented from delivering by snow and ice. We were not cut out for country life.
After hospitalisation in January, there followed weeks of blood tests, analysis of a bone sample and the removal of a nerve from my foot. Treatment started just in time after the results of the nerve biopsy came through and vasculitis manifesting as mononeuritis multiplex was diagnosed. The damage could not be reversed but a course of cyclophosphamide and steroids stopped the condition from developing further. I remain in constant pain with reduced mobility and bouts of fatigue but count myself as exceptionally lucky.
Three of the most important things in life are your health, who you spend your time with, and having something to look forward to. My wife Amanda supported and encouraged me throughout and still does. She has never complained once, but I know that she suffered.
The disease meant that I had to park my international work and for a while I thought I would never be able to work again. However, I set up an employment lawyer network dedicated to making employment law advice more accessible and Amanda and I continue to run that.
Common consequences of vasculitis include loss of employment, financial and relationship problems and mental health issues. It is fulfilling to be able to work with LCTF in assisting victims of vasculitis with tackling employment related problems. My experience gives me an extra level of empathy which can be helpful when dealing with someone at a very vulnerable stage in life.
One of the many positive things about the experience has been getting to know Grant and Adrienne Currie and the work they have done in helping develop more knowledge surrounding vasculitis. They help so many sufferers in practical ways and I have found them to be incredibly supportive and inspirational.
I am blessed to have survived and squeezed another 10 years out of life so far. My philosophy now is that if you wake up and are breathing you are still in the game so that’s a good start. Squeeze every bit of happiness you can out of every day by spending time with the people who matter to you and don’t think too far ahead but give yourself something to look forward to, however small. There is always hope and we are all capable of achieving much more than we realise. I can’t say it has been easy. It hasn’t. However, what matters in life is not the things that happen but how we react to them. Years of practising karate, yoga with deep breathing and transcendental meditation possibly helped tip the balance in my favour not least because of my greatly increased lung capacity. I view my vasculitis as a sparring partner that inhabits the same body and whose purpose is to challenge me, test me and keep me sharp but who won’t win. So far so good.
I have written this on the day that the 10th anniversary Black and Red Ball would have taken place but for covid-19 and the photograph of Amanda and I surrounded by people who have become friends on the shared journey I have chosen to accompany. It was taken at an earlier event and reminds me of how fortunate I have been to share time with such kind and generous people.
My wife Amanda supported and encouraged me throughout and still does. She has never complained once, but I know that she suffered…Common consequences of vasculitis include loss of employment, financial and relationship problems and mental health issues.
As Malcolm mentions, the side effects of vasculitis aren’t always just medical, and can include worries about work, finances and relationships. If you’re going through similar, our wellbeing service can help with advice.
Malcolm himself is an experienced employment lawyer, and can offer advice on Vasculitis and employment.
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