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 January 2010

Get that sunshine out of my face...

Get this scene
I'm all set to walk wrapped up warm in the freezing cold to the bus stop, with my mum for my volunteering at the school and then out peeks the sun but it's enough to blind me from seeing whatever is in front of me when my head is upright. so I grab my mum's arm to guide me along the pavement while I'm following it with my head down. If i look up, its too much light going in my eyes that it makes me have shut my eyes or put my head down so i'm looking at the floor.

Spring and summer can be hard with bright sun BUT I make sure I walk on a shady side, probably why I'm so white with no tan ha!

Sun can make me disorientated and make me veer to the sides as I follow the floor with my head down. Today i almost veered into the road, i didn't have anyone or anything to hold on to, to guide me down the hill. I have to use all my concentration just to walk down a hill but it was freezing cold and I was finding it a bit hard. I got home safe though!

Sunglasses can be hard for me to wear as they are lopsided when I put them on due to my cochlear implant surgeries and plus it can get a bit sore on my cochlear ear with the bone going in. I opt for a hat instead.

26 January 2010


Our TV broke down this weekend which we could receive no picture, just audio, which i could hear. We then brought our old TV back in from the shed. There was a very big difference in sound. The TV which broke was stereo sound and the old TV from the shed was mono sound.
The next day we bought a new flat screen with stereo but my brother didn't get a chance to set the TV up in audio etc as he had to rush off to work. So whenever people said their S's, it was a high pitched ssssssssssss at the end of when someone spoke. My parents could hear it too but it wasn't as high pitched to them as it was to me. Whenever it did it, it made my ears hurt! My boyfriend was here at the time and he tuned in the audio thankfully! What a weekend with lots of different TV changes and sounds of the TV! I have now got used to the new stereo sound again! I'm glad not to hear them "sssssssssss" sounds again!

My mum also got a new telephone too! grr so lots of beeping from the phone and her trying out the new ringtones! She's finally sorted the ringtone because it was SO loud!

These techy gadgets take some getting used to with their sounds! haha! :)

18 January 2010

Operation go...?

I have been thinking a lot over the last few months (i do that a lot... i should stop overthinking!) about the eyelid operation. I have weighted up the pro's and cons with my family and I'm noticing my eyes a lot more because they are getting strained a lot these days, when I'm just reading or watching TV. I also have to close one eye to focus sometimes and balance out the double vision, it gets worse when I'm tired too. I have been going to bed earlier a lot more coz I just want to close my eyes and rest them.

am going up to Newcastle in March to see the eye doc as well as top doc in my condition Dr Turnbull. Another round of tests that I have each year, i can get a bit fed up of it at times but I know I'm doing a good thing, doing these tests as I am in a kind of medical survey thing which lets docs know how mitochondrial conditions progress. Since I have multiple DNA mitochondrial and it is rare in someone as young as me so they want to see how my deafness, my muscles, my eyes and feeding, basically everything and see how it is getting on each year. I think everything has stayed the same apart from my eyes.

So i think my next priority is my eyes and getting them sorted out before they get worse. It will be scary but I need to do it because its going to get done eventually. I'm sure it will help me in the long run. I have many Qs to ask the eye doc about this op!

I have also been re-pegged today! Thankfully it wasn't as bad as getting the tube one out and its even teeny! So thats me pegged for another 3 months! :)

16 January 2010

My painting...

I finally finished my painting last night. Hope you like it.

10 January 2010

Cold begone...

I'm finally over the worst bout of cold I've had for a long time! I still have a very sore little nose and cough but that's better than feeling bloody sick and feeling so crap and not having a temperature anymore! The cold was actually a good help to that!

Hopefully, the nurses can get here tomorrow for the PEG change due to the snow. Id rather have it done sooner than later, get it over and done with and not see the nurse for another 6 months i hope!

7 January 2010

"snow" way...

The big freeze is not to my liking... my feet are tingling a lot, I don't really know if thats good or bad. I am supposed to start back at the school volunteering but I have been suffering from a horrendous cold so I have had to email in and tell them I am coming in next week instead. I am having to put extra feeds on to keep my energy up because I really don't feel like eating and my throaty cough is scaring the hell out of me and its taking all my energy just to clear my throat and cough. I haven't really had much sleep either which is not helping matters. On another note, I have been admiring the lovely view of our back garden after all the snow fall!

3 January 2010

Expectations of a CI...

A few people have asked me what to expect of the cochlear implant whether it what the sound is like or what ear they should do etc..
I do try my best not to get their hopes up because a cochlear implant sounds completely weird at first and takes a lot of practice and listening to get to the point where you start hearing "almost normal as possible" because a Cochlear implant is not totally perfect hearing. It is as good as you can get it as you are getting used to each programming map. BUT you DO get used to the map eventually if you keep wearing it and it gets better.

If you wear it every single day and listen to everything and anything, and after several mappings after every other month, you will begin to see the benefits.

it is also better to implant the worse ear, or in my case any ear since I am profoundly deaf.

Everything takes lots of practice with the first few stages of the switch on, and you will get to a point where you hear more clear and hear music, the phone. doorbell, voices.! the list is endless!

The operation is just the first hurdle of a cochlear implant.

1 January 2010

New Year 2010

This new years went rather good for once, better than the last two years. I have made no resolutions this year either. I plan to have a good year though, despite the upcoming eyelid situation...
I also am starting volunteering again at the school since i left last summer, that will be a good chance to get out there and do something even if it is just one day a week at the moment
I'm trying not to think about the eyelid thing at the moment which is going fine at the moment, I shall deal with it when it comes!
Also, this january, I get my button PEG changed, i hope it doesn't hurt too much when the nurse pulls it out... it shouldn't do, the nurse at Newcastle said it would only be a scratch and its over, not like when I got the tube PEG pulled out which was awful pain! (but then again i think nurses lie!)
I have my family and friends and the boyfriend for support for which I feel so lucky!
I have also been wasting Christmas/new year time playing crash banidcoot -mind over mutant hehe, i loved the game on PS2 when I was younger. :)