When were you diagnosed with myasthenia?

I was diagnosed with myasthenia over a year ago and in September. I had a thymectomy (my thymus removed), however like 50% of young people who have had the operation, my symptoms continue although have improved.

How did you feel when you were first diagnosed?

When I was first diagnosed I decided to adapt my diet to gluten and wheat free. However I didn’t give this new adaption a fair chance to work as other factors in my life such as drinking too much, smoking and not getting enough sleep. But between then and now, my diet has been healthier than ever before by cutting out the sugary snacks and eating a balanced diet, which is making me feel physically really strong.

How does myasthenia affect you physically and mentally?

When my first symptoms showed, I allowed them to stop me from socialising, couldn’t look my partner in the eye and let the negatives consume me. But over the course of a year, I have fought back and forced myself to make new friends and to take on challenges of the body and mind. Physically, my condition affects my eyes and my vision (partial tosis) or ‘squint eye’ and when I get a cold my symptoms can flare up. My speech and swallowing can also be affected.  

Tell us about your blog?

My blog - 365 days of myasthenia - was set up to capture my day-to-day life living with myasthenia. I will post a photo or video every day for a year in the hope that it’ll raise publicity for the condition and also for the charity, Myaware, who have supported me since being diagnosed. Every time I smile for the camera and publish a photo on my blog, this is an act of mental strength.

How do you deal with living with myasthenia?

One of the common symptoms in myasthenia is double vision. When my symptoms flare up, I try to not let them stop me from doing my usual day-to-day things. I keep my fitness levels up and eat well. Of all the lifestyle changes I’ve made since being diagnosed with myasthenia, scheduling in time for relaxation was the biggest culture shock, but recently I’ve found pampering with face masks works for me!