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

6 November 2008

Intensive memories...

I was watching a children’s hospital documentary programme on TV tonight and there was a teenager who had got meningitis and was in intensive care. She recovered from the awful meningitis but was left in Intensive care for 4 months when the meningitis affected her walking & left her weak.She was having a moment where she was fustrated about stuff and just wanted to go home and it brought back memories of the time from when I was in intensive care last year and suddenly found myself shedding a tear for her because I know just how hard it was to go through all that. I may not have had meningitis but I still had a life threatening condition where I felt all these emotions: How bloody frustrating it was to spend so long in hospital and you just want to go home, the learning to walk after being in bed for 6 long weeks, feeling so weak I could hardly stay awake or being so exhausted from the times I couldn’t sleep at night that I would cry. Feeling so weak that you can’t ever feel comfortable in bed because you can hardly move yourself and that you have to rely on nurses to look after you. Having too much time to think about things that you drive yourself mad! The torment I put my family through while I was on life support and the fact they had to come to say good bye. The confusion of bits and pieces that my family told me about what happened.

I really do not know how I got though it all and I cannot tell you how fantastic the intensive care nurses are! They really do cope with a hard job and the fact that they were so nice and were always smiling, had a laugh with them got me through one more day…
I was asked if I wanted to go back to look round intensive care and see it from another point of view about a week after I left but I said no because I had already spent 6 weeks there and felt it wasn’t necessary. Although a few months after I left hospital and I had to go for a check up, we bumped in to some of the intensive care nurses and they were really pleased to see me looking so much better than I was while I was there.

Some days, my mum reminds me how lucky I am to even be here and you know, I think she’s right.
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