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

7 December 2008


I'm sitting in my bedroom at the PC, instead of my usual couch with laptop at the moment as I'm confined to my bedroom as my parents sleep!

The reason

I can't get out of my sofa chair in living room where my laptop is when my body feels stiff as it's too low

Parents wanted to go to bed so I had to come upstairs to my bedroom the same time they did as they have to assist me by walking behind me up the stairs should my knees buckle and I fall down the stairs...

You may ask why can't I do these simple things which is because of the mitrochdrial condition and it makes bits of my body weak when I've done too much in too little time hence the christmas fayre at the school yesterday which I was on my feet from 1pm til 6pm doing errands and things like that. The thing is I don't hurt when doing whatever I'm doing at the time, the aches just sort of creeps up on me later on in the day! I came straight home from the christmas fayre at 6:30pm, made a cuppa and collpased in my chair! I dont think I had anything to eat since I had some food and snacks before setting off to the school at 12:30. God knows walking up the little hill to the school cripped me when I get off the 10 minute bus ride there as I normally get a lift off my brother or dad to the side of school.

My parents have enlisted me to have a walk everyday even if its just to the post box down the road to strengthen up my leg muscles and whole body. To be honest, I haven't felt like this since I was in ICU and I was learning to to get on my feet again after being laid up for 5 weeks...!

It's such hard work to do the littlest thing such as go to the toliet or just put some clothes on because I can hardly lift my legs up when I'm standing! If I bend over to do it, my knee is gonma buckle and I'll end up in a heap on the floor! I've cried several times today out of fustration and I can't rest til I'm sat down somewhere safe and won't fall over. My parents have been forcing me to do things myself such as getting out of the low sofa chair!

Hopefully it won't last long, hate being like this!
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