In December 2021 Robin Healy got into winter water every day of the month, 31 days in total, to raise money for Arthritis Ireland. We are so grateful to him for sharing his story with us and for the fantastic awareness and funds he raised through his icy cold challenge! This is Robin's story:
I am one of the nearly one million people in Ireland currently living with arthritis. Diagnosed at 19, I have spent the majority of my adult life living with ankylosing spondylitis (AS), an inflammatory disease with no known cure, that primarily causes pain, inflammation, and stiffness in and around thejoints. This condition affects around 0.1 - 0.2% of the population and like most diseases, occurs on a spectrum from mild to severe.
Nothing has had a more significant impact on my life than my AS diagnosis and I very rarely talk about it but sharing my experience might help others and it may give people some perspective about what it’s like to be an AS sufferer.
The onset and development of my disease followed the typical trajectory of severe AS.
It started in my left hip (sacroiliac joint), with painful inflammation (sacroiliitis) whenever I extended my leg – this ended my involvement in sports. Within a month the pain and inflammation had spread to both knees (patellar tendonitis) – this made daily activities like picking things up off of the floor and tying my shoelaces a challenge. Next, it affected both of my heels (plantar fasciitis) - walking for an extended period of time became an issue. Finally, it reached my right hip (sacroiliitis), and then the burning flares of pain and stiffness started in my neck and my spine (by far the most debilitating, 0/10 would not recommend) – worst in the morning and then improving as the day went on.
In just under six months I went from being highly active to barely mobile. By the end I had developed a morning routine for days when it was particularly bad to help me get by; wake up and take one of my prescribed anti-inflammatories and wait for it to kick in – then I could get out of bed; jump into a hot shower for about 5-10 minutes – this helped further ease the pain; finally, go for a quick swim & aqua jog in the UL arena pool – this helped restore some of my mobility. Although I still had a limp, this was enough to let me attend my college classes and get around campus. All of this time I was undiagnosed and terrified about what was happening to me.
The average time to diagnosis for AS in Ireland is ~8 years; I was fortunate enough to be diagnosed in just over six months. My treatment, weekly injections inhibiting my inflammatory response (thank you Pfizer), started soon after diagnosis. I was caught so early that there was minimal, if not negligible, damage done to my joints. Most of my symptoms disappeared practically overnight with my new treatment apart from some very tolerable lower back stiffness and the occasional flare up in my neck and lower back.
I am now 30 years of age and my AS has never been better! I am more active now than I wasas a teenager and my flare-ups are rare and very mild.
December Dips was my way of raising funds for an organisation that has helped and is continuing to help other people, young and old alike, get diagnosed sooner; get better informed about possible treatments; and get support while living with arthritis.
I can still remember my 19-year-old self, standing in a hot shower or swimming in a heated pool completely unaware of what was wrong with me, convinced I wouldn't be able to walk by 20. I am incredibly grateful that, as a 30-year-old, I can wake up every morning knowing that my disease is almost completely under control and I can look forward to getting into very cold water instead!