Marine Biologist in the Making #MyMSKStory
Dodgy days and a love of sharks
Ever since I can remember I have had Juvenile Idiopathic Arthritis, or JIA, in my hands, wrists, and legs. I was diagnosed at 1 year old after falling and hitting my knee on a fireplace.
In primary school I coped with my movement issues relatively well. However, there were times I was wheelchair bound, and once I remember thinking ‘why can’t I walk but they all can?’. Regardless, it was usually the school restricting me more than the arthritis. I wasn’t allowed to do contact sports, but I’d sneak in the games and play when my helper wasn’t watching me. I dreamt of being a marine biologist, because I’d formed a love for sharks watching my mother’s old 80’s videos and going to the aquarium. I really wanted to learn how to scuba dive, so I could follow this dream.
I was used to getting stubborn left knee flare-ups that required steroid injections and fluid removal under anaesthesia, it always seemed to fix it and the medication would be effective for at least a year at a time. However, this time was different.
During my GCSE’s, the time when you start to plan for your future, find yourself, and where setbacks can feel like they will impact the rest of your life, I started to get flare-ups which would return within days. My methotrexate medication was increased, making me feel even more ill whilst not solving the problem. The flares were relentless. Nothing was working. The inflammation was like a wildfire throughout my joints, destroying them at such an important time for growth. My joints were always stiffened with fluid. I couldn’t stand up straight anymore. I would struggle getting up from seats and walk hunched over, I needed help to get dressed, and could only eat softer foods as the arthritis had now, for the first time, spread to my jaw. Even more worryingly, it had spread to my eyes as uveitis.
During this, I had to re-learn my techniques for moving around, especially as I had put on a lot of weight from steroid tablets. One particularly useful one was learning which furniture I could use to leverage myself up off the floor. Using a thick, wooden chair, and a wooden table, I learnt how to get up from the floor without the use of my left leg. This technique I can still use today if I get dodgy days.
Eventually, I was put on to a new type of medication called an anti-TNF (a drug that helps stopping inflammation). Finally, the flare-ups stopped; however, I’m left with permanent joint damage including in my knees and jaw. I learnt how to study independently during that time and am now finishing a master’s degree in tropical marine biology. Additionally, this summer I am enrolled on a scuba diving course! It may have taken longer than usual to get here, but I got here, and it is possible to still do what you love with arthritis.
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