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 June 2010

Friends's op...

My friend emailed me yesterday and told me that his brow suspension lift operation went well and hes recovering at home now. He 's told me how it all went and how the pain and sweliling would be like etc..
He also said he would send me pics in a few days and see what it looks like. I am more worried about the swelling and the local which would sting than the actual operation! He said he had a problem due to some scarring on his forehead from a previous eyelid lift operation but he said as i dont have that, mine should be straightforward. I;m glad i have someone to talk to and tell me all about it. it makes me feel a bit more confident about doing it myself.

i am feeling i might actually do this! it's scary but I feel it needs to be done for my vision to be better. Lately all i see is my world through my eyelashes and closing one eye! Im hoping it will make my vision less double vision-y too.

on other notes, I am enjoying the sunshine we are getting and i can just relax in the garden on our swing chair! I've actually had my cochlear implant stick to the bars a few times due to it being metal!! So i always sit in the middle!

24 June 2010

The letter...

Got the letter from Newcastle from the eye doc explaining everything I already knew basically and when i read it, it gave me a few scary feelings. When he wrote I would experience bruising and swelling etc. i hate pain! and don't get me started with having a local for it! It's been in the running for 2 years now and I think this year may the year I finally go for it. JUST because I need it. I may not b looking forward to it but it has to be done!
the guy i have been writing to about the brow suspension will be having his op tomorrow. Im hoping he will tell me it doesnt hurt as much as it sounds! but ill wait til he gets back to me on it and then get the ball rolling. after all theres still 6 weeks to get all ready for it! ohh can u tell im freaking out about it??
Im sure ill be fine!

14 June 2010

Strong again!,,,

I think i am now totally back to normal! WOO! I'm glad to be moving about more easily and no aches! Well apart from eyes because they have been going totally funny lately... like i have just washed my face and water hasn't gone from my eyes yet then I either blink a few times or give them a rub to focus them again. I am seriously considering the eyelid op now because I'm fed up of not being able to see at times when they go all squinty, then I have to close one eye to focus too. It's strange though because different days, its a different eye bothering me. If it's not one eye, its the other! I'm still waiting on my friend who I emailed who is having the operation done at the end of June and as soon as he gives me a note of how it's all gone, I'm just gonna go for it coz I'm sick of the docs asking and my mum saying how pretty my eyes would be if they were more open..
I've only just started eating the normal stuff I eat now after being on the feed pump every night since I came off the holiday so I'm pleased about that. Although I did have an incident where I nearly choked on a midget gem!! But I'm glad I was strong enough to cough it out!!! It sure made my eyes water!!
I'm also avoiding any football apart from the england matches! Go England! I dont see the point in watching the other matches though!! haha my brother is religiously watching it and has his wall chart! Also I'm so glad I cant hear those trumpet things everyone seems to be complaining about. My parents keep saying it sounds like a drone of bee's but I seriously cant hear it! just the crowd noise on TV.
Right back to my crafty pieces!

7 June 2010

Getting stronger...

i am getting stronger every day now, woo hoo i have been having my feed every night and going to bed early coz I am basically shattered of the energy I've been using up during the day. I am now able to walk about unaided and go up and down the stairs unaided which I am happy about because stairs scare me when I'm weak with no energy. I always seem to have one weak leg that might just " go" if you know what i mean. i couldn't even put my own cochlear implant on because I couldn't lift my arms up enough to do it. I can do it now thankfully. Mum never knows where the magnet actually goes and with the hair in the way, the coil kept falling off!
I haven't managed to eat anything full yet apart from the usual water and jelly which is making me frustrated because I want to get back to eating something yummy such as my cakes and snacks! At the moment, i tried a skip * the crisp snack type* earlier but it didn't go well as I coughed when I swallowed it. So I tried a custard yogurt and that went down more easily. I have some antibiotics to clear anything on my chest that might stop me swallowing properly. I'm still happy that I can have my cuppa tea though ahh even if it is through a straw! Its been a frustrating couple of days, but I'm getting somewhere now! ON my feet and doing what I usually do! :D Thank god for my family and the bf! Dunno what i'd do without them!

4 June 2010


argh now i have RSI which is repetivie strain injury from constantly texting mum when i need her because I am confined to my room at mo and cant really go anywhere what with not being weak on my feet at mo. Its getting very frustrating and im having to keep taking breaks every minute during this. I cant even keep my head up either.. urgh please be over soon!

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.