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

4 September 2008

Moving on...

I have been feeling a bit sorry for myself lately so I’m going to do my best to try and pick myself up again and get back to the confident girl I used to be! I know my friends have their own lives, careers and friends going on so I’m always trying my best to make more new friends. I spend most of my time being at home watching TV or being on the internet talking to friends, so I think I may just start doing another latch hook rug to keep me busy! I’ve been staring at the same 4 walls at home now for some time and its becoming my safe area where nothing will hurt me but that’s where it’s going downhill because its giving me time to think too much and make myself worse! I need to find a way to get out of the house and my predicament before I go even more bonkers! I may write to my old junior school and see if they want any help with the kids which is a good start because its familiar territory . I don’t want to spend the rest of my life sitting at home while everyone I talk to is out there doing something worthwhile with their lives! I may have gone through a lot but my family always tell me there’s always someone worse off than me and just as well because I feel very stupid and guilty at that point! I hope to look forward to the future from now on and try not to think too much about what might happen.
I’ve always felt like if I lost my cochlear implant, my world might end because I’m so used to it now and I wonder what might happen if It ever did lose the one I have now but I don’t ever want to think about that! I don’t know if there ever might be a possibility of having another cochlear implant depending on what happens, for example, I lost my last cochlear implant because I caught an ear infection which led to lots of exploratory operations over the years and it’s left the inside of my ear a bit screwed up plus a bit of scar tissue behind the outside of my ear. Although, the ear infection that led to me losing that cochlear implant was a freak accident and it should never happen again. My mum is always telling me she thinks my cochlear implant was dislodged when I ran into the exit door really hard at Sainsbury’s when we were shopping, and me being stupid, I ran into the door at full speed thinking that the automatic door was going to open but it turned out to be the exit door and you had to walk through it the other side for it to open, I don’t know if that might have caused it or not but at the time when I found out it had to be taken out after an exploratory operation, I was so devastated. I moved on because of the possibility of another cochlear implant in my other ear so because of that, I occasionally wonder what would ever happen if I lost the one I have at the moment too. I know my condition (Multiple mitochondrial DNA deletions) was a factor that I couldn’t fight off my ear infection but because I didn’t find out the condition till I was 19, i can’t help that wonder if my CI surgeon knew that I had the condition when he found out about the ear infection, it would have saved me all the trauma of the exploratory operations. I don’t have any regrets about the choices I made to have those exploratory operations because at the time, I didn’t know I had my condition and I thought my ear infection would eventually clear up. All that said, I hope I will be able to move on from everything that’s happened and concentrate on living life to the full!
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