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


29 September 2008

Failure...

There are times when I feel like I’m a bit of a failure because of the way I am now. I know my family put up with a lot with me and how my OCD is and that makes me feel bad about myself because I just can’t snap out of it although I really wish I could. I see friends or my brother going to university and I can’t help but think “did I miss out on that?” “Was I put in the lower classes at school because I was deaf or because I wasn’t smart enough to be in the higher classes?” or “What are all my qualifications from school and college for if I can’t cope with a job?” I love my volunteering but sometimes I wonder what it would be like to earn my own money and work my way up in something I really want to do, but I know at this point in time, I could never cope with the responsibility of a part or full -time job because I’m so tired and I have my hospital appointments. Most of my friends that DO work wish they had my life because I don’t work, have lie ins and basically have all the time in the world to do what I want to do but where does that get you in life? Nowhere!
Maybe one day I’ll learn to be responsible for myself and learn how to pay bills and things like that and come to the point where I might be able to live independently and not rely on my parents to look after me as I feel like my mum is my carer rather than just being my mum, I don’t see that coming anytime soon yet though. I can wash up dishes, clear up after myself, just about make a sandwich but I could never live on my own. I would find it so lonely and I like company to distract me. I know I’m so lucky to have such great family and friends who would do anything for me. I love them all very much but I don’t want to be seen as a nuisance to them and feel they HAVE to look after me. Sometimes, I rely on my friends to look after me because even though I’ve lived in my town my whole life, I don’t know every part of it and I can go places on my own but because I don’t know where some places are, I like to go with my mum first or someone I know first then I’ll go on my own after that. I would have to trust a friend very much if I was to go somewhere out of town with them and I have never been abroad with anyone else but my family. I always found it hard to go on a train in case I miss a stop, because I can’t hear announcements of where you are and what the next stop is as they aren’t very clear because they have an echo to them. I can cope if there’s like visual announcments on the trains that tells you what the next stop is but not every train does that. Oh well, I’m sure I’ll learn…
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