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

8 August 2008

PEG Worry

Tonight I had a conversation with my parents about my PEG and the things that come with it. I worry that I may need my PEG in the long term rather than the short term. Obviously my dietician wouldn’t let me off the PEG till she is sure that I can maintain the weight I have at the moment. I don’t wish to keep the PEG the rest of my life but I need to show my parents and my doctors that I can be able to keep this weight on. I do worry that once I am off the feed full- time that I will start losing the weight again which is exactly what we don’t want to happen! Over the last year or so, I’ve gone from 6 stone to 8 stone and look much better for it. I don’t want to go back to the skinny person that I was and the PEG can be a good thing when I’ve not had much to eat during the day but I don’t want to feel I have to rely on it to keep my weight maintained.

I love my body as it is now and has made me confident and happier at how I look at my body. As I am a fussy eater, it’s not that easy to change the habit of a lifetime! I often have to be reminded by my parents to eat as I spend a lot of time on the internet and can forget to take time out to get something to eat. I hope that I will be able to get into a routine that I can eat regularly and maintain my weight or maybe put some more pounds on. Just as long as I don’t go back to the skinny person that I was because I hated it and the way people commented on it. I know I did look awful and skinny at the time but my condition affected that and I wasn't having the right nutrients. I will hopefully learn to try new foods now and again after spending most of my life eating sandwiches and easy things that I could swallow. Although I’m not ashamed of the fact I have a PEG but at some point I would like to have it taken out and have a normal natural body without this freaky contraption coming out of my stomach! I think it’s important to have a sense of humour about these types of things as taking it seriously would only make you feel a bit depressed and sorry for yourself.
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