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 March 2009

Here we go again...!

I was woken up at 6am! 6am!!! OHH! I was getting up this early for Newcastle Hospital appointment I woke up and my eyes were funny, sort of double visiony and blurry. I rushed downstairs in a panic to tell mum and I cried because that day of all days, I would be seeing a eye doctor at Newcastle! She gave me breakfast and a cup of tea to calm me down and my eyes gradually went back to normal but god it scared me! I dont know why they went like that :(

We set off at 7:30 to make the 3 hr journey up to the hospital. Dad was trying out the Sat Nav for once to see if he could find a faster way there! I listened to the calm songs of JJ cale and Eric Clapton on CD in the car, trying to stay awake! I can never sleep anywhere else put a bed or a comfy sofa!

I texted a few friends along the way too to keep me occupied including my cutie :) and saw the Angel of the North again! I do like seeing that!
We finally got there at 10am, where me and my parents walked endless corridors from the car park and in the hospital, that is one big hospital!! I was to see the eye doc first so we went there and we were waiting for like 2 hours... we got fed up and dad decided to go and get the food from the car! I saw a nice lady at first who checked the basics of my eyes and any problems I have with them which is the double vision when reading or if im tired etc... I then saw another Japanese doctor who told me results of the scan I had on my eyes and vision and what he thought etc... He said my vision is good although my droopy eyes are the problem of what is makeing the double vision and gave the suggestion of the eyelid lift again which I'm a bit against at the moment!

We had a bite to eat and a well earned cuppa before going down more endless corridors to see Prof Turnbull. I saw an Italian doctor first who tested my reflexes and my eyes and pretty much prodded and poked at me! She also gave me a series of Quizzes to answer concerning my health and lifestyle.

Finally, Prof Turnbull came in and told me about more results and outlook etc... The nice nurse we see with him took 10 little bottles of blood from me!! 10!!! My god they are vampires! haha! They wanted more blood for more genetic testing to see how I have got this and if there's anything that can be done! He again mentioned the eyelid lift but he wanted to explain about it... but i am scared about the proedure after what happened to me after the last "routine" operation I had!

They did mention it is only an option should my double vision get worse because they mentioned as I get older, my eye lids MIGHT come further down but we dont know! We dont know what will happen! It's just basically a wait and see game!

Afer being at hospital from 9am til 3pm, we could finally set off my nana's in Middlesbrough! She gave me a piece of nice victoria sponge cake! :D hehe and some Quality street for easter for me and my brother to share. We had a good chat too! hehe

I got home finally at 8 pm very sleepy! :) I was pretty glad to just sit down and curl up on the sofa in front of the Tv with a cuppa! oo and talk to my cutie on skype! :D

Thats Newcastle done for another year!

23 March 2009

Spring is here...!

I'm glad that Spring is finally here! I am enjoying all the flowers that have been popping up around town :) I shall be planting sunflowers soon! I love planting giant sunflowers to see how tall they will get! Yippee!

I have been enjoying the volunteering a lot these days, I feel very useful and i find some of the things the kids come out with funny! it has been a while that I've felt like this because anything i did before wasn't enough to keep my mind occupied and happy that i'm busy!

I find it nice that I can see the little group of people that i see at the school and i really enjoy helping the kids and I find that i use my instinct to do the things and no longer have to rely on the teacher I am helping to tell me what to do, although I do ask if they would like me to help them with anything, otherwise it's just me doing my own thing in the lesson and going round the kids seeing if they are ok with their work.

I'm still happy thanks to a certain someone and forever having a grin on my face at the moment! :)

I am not at volunteering on Wedsnesday since I am to go to Newcastle for hospital. I'm not exactly looking forward to it, since I have to see an eye doctor! I have seen eye docs before but they were always for glasses etc.. I am worried because I'm afraid that they may want to do something ie some kind of op... I'm hoping it will be maybe a bit of advice or a change of glasses? I tend to over think these things about hospital which cant be good because I lose a lot of sleep! I'll probably be having the usual tests such as blood tests! (argh!) I'll be pleased to see my nana again though since I havent seen her since christmas! I really wish I could see her more so i could be closer although we still have a laugh over the phone because she goes on about the maddest things! :) she worries about my health a lot bless her! :)

18 March 2009

Busy few days...

I changed days of my volunteering from Weds and Friday to Monday and Weds as its much easier for my mum to wake me up as I can never wake up on time when I have somewhere to be!
Today was a gorgeous day lovley and sunny! First time its actually been warm after winter even if it wasn't THAT warm but compared to the very cold winter we had, it's been a long time coming! My brother took me and my mum to the village where I volunteer and mum went to the shop and walked home since it was a nice day! He dropped me off at the school where I could hear happy kids playing! It's a nice sound :0)
Today was mostly a music lesson so lots of viewing the kids with their musical instruments as we learnt notes and songs!
At one point, there were just so many kids clapping and playing different instruments at different times what with being in small groups, it jumbled my brain!! I nearly had to switch off at one point coz it was soooooooo loud! Lots of drums, keyboard, xylophones all playing at once and with kids with their fiddling about and bickering who's going to what instrument all at once was a bit much for my little cochlear implant to take! But before I could switch off, teacher calls for silence ahhhh bliss! :) There was a fair bit of singing which was nice too :)
I finally felt content to look after myself and catch the bus home because my brother couldn't pick me up as he was busy at university which was kinda cool because it was a nice day so I wasn't very bothered about it. If it had been raining, I probably would have panicked as I had no coat! I really like days like today, just sunny and a little bit of breeze blowing and you can just chill outside, read a book or just sit on my little swing chair and listen to all the birds and feel the sun on your face! :) and maybe thinking of that certain someone! hehe
I am off to Newcastle next Weds for to see the Professor! You can just imagine him wacky white hair and a white coat! which is exactly what he's like! haha! Will be good to see my Nana and Aunt too on the way back via Middlesbrough!
Yes all in all, its been an awesome day!!! :D

14 March 2009


I stayed up watchin comic relief last night til 3am so I am very sleepy today despite getting some sleep! Comic Relief is a day that happens every year in the UK! It's a chance to be silly to raise money for charity! The school I volunteer at had a non-uniform day and we all wore red!! There was a sea of some red sprayed haired kids across the playground! hehe
I also bought a red nose and a badge! :D
I am finally content with how life is at the moment and im happy! It is mostly down to someone who keeps making me smile all the time! The internet is the most greatest thing invented to meet new people! :D
I am currently listening to music this saturday evening and I will have a good night in as usual with the parents watching good old Saturday TV including Harry Hill's TV burp! :D It never fails to crack me up! Ok maybe a lot of things make me smile! IM HAPPYYYYYYYYYYYYY! :p

10 March 2009


I am now available on Twitter! If any of you are on there and would like to follow me! Tweet Tweet! x

7 March 2009

New Look...!

Since Spring is nearly round the corner, I decided to brighten up my blog a bit from the darkness of winter!!! Thankfully I didnt have to readd everything on for this change of blog woo! I have also added a new blog pic too! Enjoy! :)

4 March 2009

There's just nooooooooo high calorie foods....!

In this day and age, most people are trying to diet and therefore theres lot of healthy foods in shops etc...
So for someone like me who needs high calorie foods to help put on weight, I can't find the things that dieticans tell me to eat with high calorie things in such as certain yogurts. My dietican told us of a yougurt thats packed with calories but they don't have them in shops anymore because so many people are trying to lose weight, that there's only low fat things!
So I stick to eating crisps, chocolate and cakes!! ( yes I know you're probably all jealous now!) but sometimes craming all the junk food makes me bloated! I do also eat healthy stuff like fruits and low fat yogurts as well as the high calorie ones!
You just cant win!

3 March 2009

Up and Down...!

My weight is on a rollercoaster at the mo! Up and down! I have been all eating, doing my PEG feeds 3 nights a week and excercising once a week on Wii Fit! I don't really see my dietician anymore becausse of new stupid health policies that say they dont need to see me in person and keep an eye on me over the phone. How is that a good policy? I could go down to 6st again for all they care and they wouldnt know it??
At least I have my family keeping an eye on me and my weight! :0) and I'm pretty much happy with how life is at the moment! I'm enjoying my volunteering at the school despite regular changes of classes but I kinda like that change because although I like routine, I also like a variety of things to stop me getting bored easily!
We had a power cut this monring too so i had no net arghhhh worst night mare ever! So in the very long 2 hours that the electricity was off, I started the book Twilight and even though I've seen the film, id like read the book too! :D