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

26 February 2010


Newcastle has been postponed til Easter now which i'm feeling pretty rubbish about because I really wanted to get these eyelid op answered by the doc. At least I won't have too long to wait since it's only 3 weeks til Easter! I'll just have to try not to worry about it

Still, i am being kept busy trying to get the hang of crochet! its proving tricky!

24 February 2010

Nerve Centre Visit...

Yesterday, I went along to the Nerve Centre in town, they are a drop in centre for people with neurological disorders and their careers, and they do all kinds of activities such as arts and crafts or games. Me and my mum went along yesterday after finding out about them a few weeks ago.

I wasn't sure what to expect when I got there but they were all so nice and welcomed us and while they told my mum about the centre, I was getting stuck into the crocheting as they had someone who was showing us how to do it. I had been wanting to try crochet but never could get the hang of it! Before you know it, 2 hrs flew by and we went home. I am looking forward to going back!
I can go whenever there's any activities on and just join in! It had just been what I was looking for to get me out of the house! :)

l look forward to the next time i go! and see what else is going on! :D

22 February 2010

Button PEG flaw...

I have found a flaw in the button PEG which I got back in November. Apart from that tiny flaw, the button PEG is brilliant!

I find that the extension tube that clicks into my PEG, when you turn it all the way round clockwise, there's nothing to stop it from going back anti-clockwise so if you are fiddling in bed, it finds its way back anti- clockwise and can come out. It would help if there was a stopper to keep it there while you sleep! It has come out once or twice and I've woke up in a pool of stinky, sticky feed liquid in my bed. Some nights, I can be fiddling with the PEG tube to make sure it's still in and it's still all the way round clockwise! I'm having a few sleepless nights when I'm on the feeds because of that. BUT apart from that the PEG is all great and I haven't had an infection so far!
Plus it's a little dinky think on my tummy and I forget i've got it sometimes! hehe

20 February 2010


I noticed tonight, a sound that has been part of everyday life. You know when you brush your hair on the cochlear implanted side, it whooshes? thats the only way I can describe it, even when running your hands through your hair, its just whoosh, maybe a bit of a crackle if the hair is dry. I've had that sound for over 15 yrs! *i have had implant for 16 but it took me time to get used to sounds give or take a year" Sounds like that have become familiar with me. Every day things such as the telephone or my family talking in the back ground. Mind you, i hate dads snoring! I'm lucky i can switch off and have a silent sleep and not be woken. Although, not being able to wake by sound has its bad points but the sounds of a CI outdo any of the disadvantages of being deaf!

Also, Newcastle is creeping up soon in March and get the eye situation out the way! Ask my Qs that i have written down all ready for it. If i go through with it, and I'll probably say yes this time round because my eyes are bothering me now look wise and vision wise. I just hope i wont have to wait long to have it done or i will be freaking myself out with worry as i always do before an op! But we shall see! (see what i did there! hehe)

9 February 2010


My eyes are now getting on my nerves! I want to read ONE sentence and they wont let me coz of my double vision!!! grrr

5 February 2010

It's come round fast...

I have got this years appointment to go to Newcastle in March for the usual tests I have every year and quite getting fed up of it now but I know it needs to be done to find out how the condition is progressing. I'm also going to try and be brave enough to ask the Qs I have wrote down in my little notepad to ask the eye doc about the eyelid lift op.

i know it may be some time before it gets to the time to do the actual op as I'm not sure about the waiting list. I know it needs to be done now because its affecting my eyes. My eyelids have drooped down so far that my eyelashes sorta cover my eyes and that makes my eyesight funny.

I'm just try not to worry til it actually comes round! THEN I can be scared! :P

2 February 2010

Surgery and Society...

I have been watching 2 documentaries over the last two nights about society and surgery. There were people who got surgery just to fit in with society such as people getting bigger breasts or having a nose job etc

I agree with any surgery that is going to help the person whether it is medical or help give the person the confidence to walk out of their house.

What I don't agree with is people having surgery such as bigger breasts to make themselves more popular or famous or having surgery when there's absolutely nothing wrong with their bodies!

I had my cochlear implant because it helped me to hear, it has taken time to get to where i am hearing wise, i've had a muscle biopsy to help docs determine what my medial condition was and I may in the future have to have my eyelids done to stop them before they droop further or close up all together, but I am doing this for my own good health and to stop my double vision rather than to show off to people how good looking I am.

What ever happened to natural beauty?