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

19 September 2008

Understanding me...

Understanding me is not easy! I have many people ask me various questions about my life when I meet new people and why I can’t do certain stuff. Maybe I don’t explain it well enough, I don’t know but when I talk to new people I go through the same stuff over and over again such as why I need to sleep a lot and why I don’t go out as much or have a job and basically why I am how I am! I can sometimes send them this blog but not many people have time to read it all my posts or basically skim through it and I can understand that if they are busy people but if they don’t read the blog, I wonder why do they want to ask me Qs about it if they have this blog with everything on it! I have a combination of 5 things all at once and it gets incredibly annoying to be like this & coping with it.
I can get upset about it all because I feel other people and my friends are doing what they want with their lives and I can understand that because they are healthy, why should'nt they? then i think what i am doing with MY life because I can’t even summon myself to go in the garden because of a dustbin?? or worry about going out in case I need to use the loo (because i need a disabled toliet with bars that help me get up off the toliet) Every couple of weeks or months, me and my family go through the same thing with me where I get upset about it all and I’m feeling I’m not achieving anything in my life because of those 5 combinations of things. I have a lot of new people call me lazy when I tell them that I need a lot of sleep and etc, I try and laugh it off but sometimes it can hurt my feelings the way some new people say it. I do hate being at home ALL the time which is why I volunteer but it doesn't help when some new people saying "you need to get out more" because it's really not as easy as that!!!

The 5 combinations I’m coping with at the moment:

1. Multiple mitochondrial DNA deletions: (a condition I was born with meaning my energy genes don’t work) the reason I went profoundly deaf, need a lot of sleep & get tired a lot, have droopy eyes and fussy eating habits, weight problems, get tired walking long distances as I’ve no energy

2. Cochlear Implants: have had two CI’s separately because I went profoundly deaf at the age of 8 because of Multiple mitochondrial DNA deletions. I now have just one after losing one to a bad ear infection.

3. Raynaud's syndrome: I get cold more easily than usual so I like to be nice & warm!

4. OCD (obsessive compulsive disorder) and anxiety attacks: I have suffered from both since I was in hopsital in 2003 when I had a routine op and it went downhill after ending up staying in hospital for a month/and worry a lot. I hate it when this happens but i have good and bad days as does anyone.

5. PEG (Percutaneous endoscopic gastrostomy): I was given this in 2007 when I had trouble putting on weight due to Multiple mitochondrial DNA deletionsand get fed 3 nights a week at present. It also ended in me spending 5 weeks on life support due to contracting Pneumonia & Septicaemia. Due to the PEG I have gone from 5 stone to a healthier, curvy 8 stone. (size 8 to size 12-14) and feel more self confident with my body now.

Now all of these are what I am coping with at this one time and you can’t expect me not to be a bit stressed out or depressed or even a bit CRAZY from time to time!!! This is all why I don’t have a job or have trouble with some things. I don’t expect people to change their ways for me. I expect them to understand where I’m coming from and respect WHY I’m like how I am!
I have my ways that I always have been like staying in with the family and don’t like to get drunk which is nothing to do with the combinations. I am just simply like that and like to sit in my chair talk to friends online, or watch a TV/DVD with a cuppa. Take it or leave it, that’s me
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