• Electric Will

Accepting that I have Duchenne

A year last January is when I finally accepted to myself that I have Duchenne muscular dystrophy.


Until then I hated talking about my condition, didn't want to go to the hospital appointments, in fact the only clinic I going to, was for my breathing. Tried getting out of that one all the time, hated seeing my breathing slowly get worse every year. I should have also been going to the neuromuscular clinic at the Hallamshire, and even more importantly the heart clinic at the Northern General. The anxiety levels of going to chest clinic was so high, even with taking Citalopram. That I could only imagine me having a panic when I had a echo test on my heart. It was my dad who didn't really want to go to the neuromuscular clinic, because of a bad experience we had with a doctor. It's also probably didn't help that in 1996, doctors at the sheffield Children's hospital wanted me to have tendon release surgery. Which I did, and was a massive waste of time, it actually damage my legs and they didn't do the surgery properly. A hospital near Manchester who specialised in Duchenne had to fix what they did. so my dad didn't trust Sheffield hospitals with my condition


Anyway, so a year last January is when I decided this was so stupid, what was I doing putting my health in danger? I talked to mum about wanting to go to the neuromuscular clinic first, to sort my health out. so she made an apointment and we went in May. When we got there, we saw a doctor, who said I should get my heart checked , then we saw a neuromuscular care advisor, (which was new to me). This turns out to be one of the best things for my health. Because last December I went to the heart clinic, had the echo test and found out my heart was weaker, also found out that I have heart palpitations. The good news was, I could take medication that takes pressure of the heart and beta blockers for the palpitations. I can honestly say I feel like a new person! This also boosted my confidence to talk about my condition with other people, and decided that I want to live my life as best as I could. This is also why I need a fresh start in my own home, with 24/7 care.


www.musculardystrophyuk.org/


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