My name is Michelle Rivett, and I have a connective tissue disorder called Ehlers Danlos Syndrome (EDS). My condition is progressive and can be difficult to treat, it is regarded as a rare disease. Clinicians would categorise EDS as a type of musculoskeletal (MSK) condition of which there are many different types such as osteoarthritis, rheumatoid arthritis, lupus, fibromyalgia, gout and many others.
Exercise is an important part of my health management. I need to build muscle and exercise connective tissues to minimise joint dislocations. Exercise also help with symptoms of dysautonomia – I’ll explain what that is later!
My partner Kev introduced me to Cardiff parkrun in 2010, I have now completed more than 300 parkruns at 180 venues and volunteered on more than 30 occasions.
In May 2016, I wrote an article for the parkrun newsletter about how parkrun, running, walking and volunteering had helped me manage my condition. This is still very much the case, in fact parkrun has helped me to get through a very difficult period recently. In May 2017, I became very unwell with dysautonomia, this is where the automatic functions of the central nervous system don’t work as they should. For me, I experienced problems with my blood pressure, heart rate, breathing, digestion and bladder function. I was too ill to attend work and was struggling with everyday living. My condition is rare and there was no local medical services that could help me, specialist input needed funding from my health board and the process is slow. I had support from others with the condition and read up on ways of managing the symptoms. I had to make significant lifestyle changes, I read about the importance of exercise for dysautonomia. So, even though I felt terrible, I persevered with exercise including my beloved parkrun.
I found that the exercise did indeed help, in fact parkrun particularly provided a reset function for some difficult aspects of my dysautonomia. I was determined even through my lowest times to have the best life I could and stay positive. My life has changed, and although my health takes more management, I have a better life in other ways. I now have a less stressful job, and a new level-access-home near the sea – which provides great running and walking on the beach!
parkrun has helped through some difficult periods of ill health and recovery, whether I am walking, running, volunteering or watching. parkrun gives me a sense of achievement, it enables me to socialise with others and make new friends. There have been times that, if it wasn’t for parkrun, I would have been totally isolated.
Experiencing the benefits that parkrun can bring to people, like myself, with MSK conditions has made me determined to encourage others with similar conditions to participate more at parkrun. I was therefore delighted to recently be appointed as one of parkrun’s volunteer Outreach Ambassadors for Arthritis and MSK Conditions along with two fellow parkrunners; Ai Lyn Tan and Jonathan Leech. We aim to reach out to non parkrunners with arthritis or other MSK conditions to let them know what parkrun has to offer.
We’ve set up a Facebook group for parkrunners with Arthritis / MSK Conditions. If you, or anyone you know, is living with such a condition we’d love to have you join us in the group so that we can all encourage each other and share our parkrun stories.
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