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 February 2012

Rare conditioin day...

Today is rare conditon day to spread awareness of rare conditons such as my mitochondiral conditon. I have sent several copies of my story to newspapers and magazines and tv programmes in the hope they will print them and get more awareness out there i am showing this pic on facebook to get more awreness out there. Hopefully it will and get more out there!

23 February 2012

Cyst op...

Today I went to the local hopsital with mum to get my cyst removed from my eyelid. We got up at 7 even though the appointment wasnt til 10. i had a cup of tea when the ambulance came at 8 to take us there. I just  about finished my wheatbix!n We got there and we waited for about an hour before we got in. 
She put in a local in my eye lid which i got used to after the brow suspensions so it wasnt too bad! she removed the cyst and gave me 4 dissolveable stitches. Im to keep it clean and dry for 2 days.  My eye is blackening up a bit more now. Needsless to say my poor mum felt faint and had to be given an ice pack because she hates needles. This is why dad came with me for the brow suspensions!! But its all fine and another op done with. Just gotta chill out!

21 February 2012

Pancake day!

It's that time of year again! Pancake time! I love mine with sugar and lemon! Dunno why I dont have them any other time but its like a rite of passage to have them on pancake day!

My difference in weight...

It's taken a lot of eating snacks and food and the help of the PEG feeds overnight but im finally at a healthy weight you can see the change below

Ive gone from 5st to 10st 4 pounds in 2 yrs

17 February 2012


Today I attempted zumba  on the wii with my friend Victoria, It was funny watching Victoria doing it but when it came to me doing it I was ok but losing my balance here and there maybe try it again next week and see how it goes then. I will move the table out the way so i dont crack my head open! But i have an appointment to see some one at the local football stadium about doing exercises and see where that goes. Needless to say after 15  mins of zumba i was knackered! But still its excercise! I will try and do a bit every other day.

A new dietican came on Monday to reevaluate my diet since I'm putting the weight on. She is happy with what i'm eating and has taken me off the feed every other night so can have a break from it.  I weighted myself this morning and I was 10 st 4 pounds so ive gone up a pound lol. Hopefully the excercise will balance it out!

12 February 2012

Gaining and gaining...

Well, the feeds to my PEG overnight every night are diong the trick i've ballooned from 8 stone to 10 stone and 2 pounds! Although the weight gain is great  and i m happy to be this weight and be healthy but I dont want to get any fatter!! My dad has started making pregnancy jokes...
The dietican is coming on Monday to assess my diet needs and maybe change from calories to energy feeds over night.  Its a different dietican to my usual one because my usual one is on sick and its hard to find a good dietican round these parts!

other than that my N5 is going great after 2 repleacments. The first one had smartsound on it and kept going quiet in loud enviroments and the 2nd one kept cutting out. Third time lucky! Im also have problems with the hook digging in the top of my ear. i wonder if my centre has a  plastic cover to go over the hook to be more comfortably. ill try some vasaline in the meantime.

i found this picture on a blog which is intresting.It shows the generation of CI's of which I am familliar with some of them. CI's have come along way since the box ones i used to use at junior school.

I have been on the look out for mito people and I struck lucky when someone added me to a mito group on facebook. We now meet and chat on skype every Thurs and saturdays to get together and chat about mito or anything we may want to talk about. Its good to know there's mito people out there even if its not the exact same as my mito conditon. But mito conditons affect people in different ways so its good to have support and also help others with advice. I even disovered that  someone knew Professor Turbull who I  see at Newcastle  because hes known for his research into mitochondrial research.  Its a samll world!

5 February 2012


I took a tumble in the bathroom last night at 3am. Must have been tired. I had basically crawl to my bed to get myself up! i now have a sore elbow and 2 bruised knees. i dont even know what happened! sometimes i dont pick up my feet enough to walk. Pick myself up and move on!