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

8 December 2011


this morning i had the dietian round for a check up. i am finally at a perfect weight of 9 stone 7! i know i was shocked myself! its  been a while since my dietian has been happy with my weight and shes finally happy! i am enjoying being curvy since i have been able to find closed to fit me!

on other news
i have a halper come round every thursday and she doees what ever i want to do like make cakae with. she gets paid to spend time with me but i dont mind as shes my age and she is a nice to have   company with.

16 November 2011

fed up of doca

ever since i have been ill i have been checked up on by docs weekly which im really fed up of now i wish they would leave me alone as i feel ok now. on another note i have my n5 which im still getting used to. Bradford are sending me a new one because of the smart sound which i dont like. the current one is mufffly and im finding it hard to adjust to. so fingers crossed that the new one is ok

10 November 2011

new n5

hello sorry ive not wrote for so long as ive been ill with depression. ive been in and out of hospital getting the right medicatioin.

on a b etter note i have got the n5 and its nice black sleek one. i got my old programme on it ane im still getting used to using it/ it came with a laptop bag of goodies  il let u know how i get on!

13 August 2011

out of hospita

i had to have medication for my condition as i was depressed at my condition so i had to go in to hospital to be kept an eye on i am out not and looking forwrd to my birthday tomrw

21 May 2011

update on Newcastle...

Three weeks after newcastle, I feel crippled from backpain from the walking i did there and i saw all the docs. they have began an intensive support to me in the way of depression towards my condition and things that have been happening since christmas such as my chest infections. My doc Mr Turnbull has been in touch with various other docs regarding my breathing, depression, my energy fatigue dietian etc..
i had been ok energy wise but going up to newcastle i dont know what happaned to me up there either bad hotel beds or the walking long car journey up? or the the worrying?  but something has clicked in my head and makes my body think my body is weaker than it is
 i do wish my body was the same as it was before newccasle at least i could do stuff easily such as things i cant do now.
im kinda worried for the future now as i worry about my aches and pains.
its even clouding the things i enjoy doing such as chilling out watching tv browsing the net and doing everyday things. sleeping isnt too good either BUT I am determined to get back to how i was at least before newcastle. 
I have been doing my physio exercises at home hopoefully they will help.  although it doesnt help that i have a new mattress to get used to which crippled my back again. its not easy recovering when you keep getting a bad back!!!
anyway thats all updated for now and hopefully the  next blog will be more positive!  

4 April 2011


Apoligies for not writing on my blog for a while. I've been recuperating still from my viral infection.  Yes, i STILL have it! lol
I have been given more meds from my GP with the help from Newcastle docs via phone to try and get over this.  Ive been having a lot of sleepless nights therefore not been up to doing much except want to stay in bed all day because the  viral infection has been messing with my PEG feed too making me feel very ill. i just hope in time i will begin to feel better.

24 February 2011

3 different medications, 2 visits to the doc and lots of coughs...

This has been going on far too long now! i feel im maybe starting to get somewehre now even though im exhuasted and tired from sleepless nights and lots and lots of coughing!
called my GP several times who has prescribed me 3 different medicenes and im now on the 3rd see if it helps.
ont he 2nd medicene prescribed we were told we could put it through my PEG once it has dissolved but it blocked it. we had to call out our district nurse who had never seen a button PEG like i have before.   she had to call my hospital in newcastle before attempting to change the button herself because my PEG nurse was busy elsewhere. Newcastle talked her through it and she almost struggled to get it in but it finally popped in! i was like thank bloody hell for that otherwise id have to stick with a catheter tube in there til the PEG nurse came.  Now the new peg button was in, she checked to see if it was unblocked and i could continue my peg feed since ive been ill and have needed it more than usual. I feel very tired and sinus are affected by sore eyes.
hopefully the 3rd time lucky medicene will do the trick! watch this space!

9 February 2011


I had the physiotherapist over yesterday for a reivew on how they can help me. We had a long chat about my muscles and how/where they ache/stick and the history of my mitochondrial condition.
She gave me some 3 excercises to try once a day to build up my strength in my muscles. She said it wasnt about being flexible or fast but to try and strength up the tummy core parts so it can help me to use my back and the bottom half of my body more because the physio told me im using more of my upperbody to get up and down etc or do things. she was also concerned about the way i walk because of my feet when they are relaxed sort of flop forward rather than stay upright so she hopes the exercises will help that.
other thatn that i found out im suffering from a viral infection and the doc doesnt have a time stamp on how long it will be before i get better. he gave me medicene for the mucus thats sticking in my throat. i also emailed Newcastle to let them know and they replied back saying the GP told me all the right thingjs and i just have to wait it out and continue my feeds over night.

5 February 2011

Touch phones,...

My phone is falling apart! oh nooo. its been a while since i lookied for phones since ive had my trusty phone for about 2 and half years and now the keypad is falling off!! too much texting?
Anyway, i looked at the latest phones and most of them seem to be touch screen kinda phones and ive never really been a fan of them! i want ny phone to look like a phone! I ususally went for sony erricson for the way it sounded clear when i take a call or cal someone.But now even sony erricsons seem to be going into touch screens too1 I worry aboutt touch screen side of things because of my cochlear implant.  ive never touched touch screens and then touched my cochlear implant but if they are anything like tv screens i worry they will scramble my MAP so ive sent an email to the cochlear implant centre to see if they are safe to use with cochlear implants.  if they are ok, i may consider one and enlist the help of my brother to help me look for one! anyway apart from that the left eye still feels strange and i keep closing it to foc us but ill ask about that at my next hospital review!

18 January 2011

Dissolve, stitches, dissolve...

My eyes seem to be getting there now. the right is fully healed but the left still has some tiny stitches that are refusing to budge and dissolve! They arent sore or anything but wondering why its taking so long for them to come out. Even the local nurse didnt want to attempt to take them out!
Last night i was awake half the night with a very sore chest after all the coughing ive been doing, it was so bad it felt like heartburn and didnt go til the monring when i had some paracetamol but at least i had some sleep.
im not sure how im feeling about how the eyes look so far. yes they are open and im seeing ok (although still closing one eye to focus) theres not any double vision unless im tired and they tend to get achey easily.
i havet had open eyes since i was a kid, even when i was a teen i never really noticed that my eyelids were over my pupils til a doctor pointed it all out at 18. im not too bothered about how they look anyway. the op was required to keep them open rather than make them look better but im happy with them anyway, i can see. i can hear (with the ci) and am happy.

9 January 2011

Fed up...

I am fed up of feeling ill now, over christmas and new year I have caught every bug going and i havent even been anywhere apart from one trip to the docs!  My brother has given me the latest bug and i have a killer sore throat feel tired all the time because I cant sleep! its so annoying.  I have'nt had a decent nights sleep since the beginning of december i could cry at times!
Ive had non stop sniffers, vapour rubs, head coolers but Im thankful I had the flu jab and its not gonna get any worse than this?!
ive resorted to writing on notepads to "talk" since its hurts too much to actually talk.
it reminded me of being back at school when i lost my first cochlear implant and i relied heavily on written notes to help me through my GCSE's.
On another note, my ledt eye is getting there, its still sore due to the lack of sleep and the longer recovery time due to the complicated op so im on my 3rd batch of anitbiotic drops but its starting to feel more "normal"
I've taken many a paracetamol over it over the headaches and the pain i got from it but now hopefully its all over.

3 January 2011

Happy new year...

Happy 2011 to you all in the blog world.
I dont have many resolutions for this year but just hope it will be a good and healthy year!
I started off new years with a bloody cold but am feeling a bit better!
The eye ops are officially over (i hope!) just have to get used to them!! The left eye is the worst. The rght eye has recovered well although my left is "seeing" a bit funny with blurryness or double vision but then again it was a complicated eye to work on my doc said so we will see what the new year brings