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


3 June 2010

The mito is back with a vengeance...

I went down to Bournemouth this week to see the bf, although not the holiday I intended! As soon as I went down there, i was coming back home 3 days of no sleep, hardly anything to eat or drink later because of my mitochondrial condition, instead of going to the beach or going for a walk with the bf, i was bed ridden and stuck indoors because I couldn't do anything myself. My swallowing was the most worrying bit though because id not brought my PEG pump with me on this trip as id been ok and didnt feel I needed to bring it. I went on monday and I was sent an emergency PEG pump to the bf's house but I still had to go home on the weds because i was no better which is disappointing.
I came home and the doc saw me and told me to start drinking some water with sugar and salt in it. it sounds yucky but u cant really taste it! It was either that or go into hospital and do it by a drip. So Ive been on that since yesterday with no food and just the PEG feed. But i seem to be getting stronger every day after some sleep as well. It can be so frustrating at times as i just wanna be strong again! BUT i have determination! I will do it!
I can't be doing without my tea!! i love my cups of tea and i hate it when i cant have it and have to rely on water when im like this. I managed to have a good walk about the upstairs of the house try and strengthen my legs but im not keen on trying the stairs yet!
We also called the newcastle team who said that 5 other mito patients have been said to have had these aches and cant move or swallow. they said it was down to the hot weather we have been having because the sun takes the salt out of your body and dehydrates you so we need to keep drinking water. im just happy enough to have my tea through a straw at mo! and i have carefully eaten some jelly. so thats good for now.
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