Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story


25 August 2008

Muscle Pain...

Today, I am feeling extremely weak and I’m laid up in my cosy seat trying to keep my head up as I write this. Every now and again, I have to relax and rest my head on the top of my seat to take the strain off my neck. I hate days like this because I can’t do anything without something hurting because I’m just exhausted and weak so I spend a lot of time in my chair trying to regain my energy. My OCD is no help either because it makes me feel a bit crap about myself and having to get things perfect before I can relax. I was in bed till 12pm today and when I wake up, I know if I’m going to have a good day or a bad day. Think of it as spending all day at the gym doing weight which means you can’t move for days afterwards! I don’t know how long it lasts for me. It can be a few days up to 2 weeks and I always feel very helpless during these times and I rely on my family a lot. My mind feels exhausted too so I’m always tired and just want to sleep but I can’t because I’ve just got up! I spend a lot of time stretching out my legs and my arms etc when I feel like this to keep my muscles moving
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