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

28 December 2009

So fast...

Christmas has come and gone really fast this year... I guess when you are a kid it takes agesss before Santa comes and you just want to open your presents! I had a nice time during Christmas but it just went by very fast this year for some reason. I have been keeping myself preoccupied with a painting kit I got for Christmas.

My eyes have been very tired over the christmas period and I'm feeling I must do the eyelid lift procedure and that I must at least give the doc a chance to talk about it and what it involves. even if it scares the bee jeebies about of me.

A New Year A new start.

24 December 2009

Merry Christmas Everyone! hope everyone is well and having a good "hearing" christmas! I am planning to spend christmas with the family and it will be a fab day :)

21 December 2009

Snowy Feet brrr...

As the snow arrives, I am trying to keep warm as possible. I have been out in the snow on outings to my friends and family some near some far away and the car has been freeeeeeezing! My body seems to warm up apart from my feet. My feet take a while to warm up even with 2 pairs of socks on! At least it has stopped snowing for now and the roads are getting gritted! I am looking forward to spending christmas with the family and doing the usual xmassy things! :D

14 December 2009

Silly hospital confusions...

At least some good news for Christmas, I don't have to see the nurse every Monday til January because my mum knows how to unfill and fill my balloon in the PEG. My mum has seen the nurses do it themselves plenty of times even though they don't have a clue about this type of button PEG. They actually have to look through instructions on how to do it. I don't know why my mum can't do it all the time and have a check up of the nurse on the phone?

Then in the mail today. an appointment for me to have an eye check up in Newcastle in January when I'm due to go in March?? When the agreement was to go up to Newcastle in March to have my check up on my condition, my eyes AND my PEG. yes it's always one long day there... mostly sitting around waiting to actually see them then it's loads of tests (which I'm quite used to that it's become a drag...) I assume they wanted to discuss the eye lid procedure. (which I'm still freaking out about) but I will listen what the eye docs gotta say but in MARCH! Even though I'm freaking out about it, I know I have to do something about my eyes. Even if I don't like the fact it's surgery near my eyes, but i'm hoping it will be the LAST procedure I need doing because of the condition. Then I can relax for the rest of my life.... maybe... I hope...

Either way I'm looking forward to christmas and forgetting about my medical worries have just have funnn!

11 December 2009

Shake, Shake...

Last night I was watching a documentary on bbc3 about a man who had been paralyzed from the neck down. At one point of the documentary, these nurses had to shake him on the bed laid down to get any fluid off his lungs. I had totally forgotten about when I had that done too when I was in ICU in 2007 and I had pneumonia. Even with a drain in my lungs to get any fluid out my lungs, I had to do this shake too. The nurses put your hands on top of your chest and shake up and down once or twice. I hated having it done because they had to push very hard on my chest and it wasn't very nice at the time but eventually it did the trick and got the fluid off my lungs. Like i say I had totally forgotten about that part... Some parts are quite clear in my mind and other times I see something that reminds me about that time. I am very grateful for it though for the docs and nurses at the ICU unit at Bradford Royal Infirmary.

6 December 2009


Every now and again, I get ringing in my ears, even with the CI on. It's usually set off by lots of different noises going on! Such as a loud TV and my parents trying to talk over it. Or a disco and lots of people talking at once. When I get this ringing I don't when it will stop , things can make it louder such as running water out of a tap or if i switch my cochlear implant off. Which I find strange.. you switch the CI off, it gets a bit louder but when you switch it back on, its still there but quieter. It can go on for a long time or a short time.
Last night It was set off by the TV having to be turned up because my dads going deaf... old age.. hehe I tell him to use the subs but he doesn't he can be there going TURN IT UP! TURN IT UP! And I'm there going "It's loud enough!" How ironic! :P
Anyway, the ringing went on til 3am after the loud TV and parents talking over it. I eventually got to sleep, but I still have it at the moment, hopefully it will it fade out soon.

5 December 2009


With my eyes getting strained, I am experiencing headaches more. I can have good days and bad days. With the bad days, where i have to go rest my eyes and have a sleep. Hopefully if i have the eyelid op, that will solve that part that i don't have to strain my eyes anymore. But I know that the eyelid lift wont be for a while yet, maybe late 2010.

But today I have been listening to Christmas songs! And all the christmas fairy lights are up! The Xmas tree will be later this week. :)

1 December 2009

Funny CI moment...

I put my Christmas socks on this evening, hehe with little santas on, and when ever I walked around, there was a *tinkle tinkle* I knew what it was. But when I'm sat down, and it *tinkles* I'm thinking what the hell is that! Then I'm aware I have BELLS on my socks! hehe Silly me!

In spirit of Xmas..

I have changed the background of my blog! only 25 days left to christmas! :) Bring on the families, festive food, Xmas music and presents! woooo!