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

5 November 2008

C.I.N fun...

I woke on Monday to find I had no internet! I hated being without the internet since it’s my gateway to the outside world most of the time. I speak to my friends online a lot as well as doing my blog & being addicted to facebook! It has been a longest boring 2 days of my life since I’m always on my laptop.

However I was out of the house on Monday because I had an appointment at hospital for my mitochondrial condition so that took having no internet off my mind. It took an hour and 3 buses to get to Bradford to St Luke’s hospital. I bought a magazine to read on the bus but 10 minutes from setting off, I got a headache; I never could manage reading or sleeping anywhere else but a bed! even with my C.I switched off. I also got some ringing in my ears when I was on the bus so I switched my C.i off for a few minutes as the ringing went because it made my hearing go funny& distorted. It rarely happens but I think it’s because I’ve had a few knocks to the head so it’s fair enough that I’d get some ringing in my ears!! It mostly when I’m tired or in a vehicle like a bus or car. At worst, the ringing sort of gives jerks my head when it starts.

Well, the appointment itself went fine, I chatted to the doc about some of my concerns towards the PEG I have, such as how longer into the future I would have to have it. I’m just getting frustrated at having the PEG in my body now but I’ll just have to cope with it a bit longer! Me & mum had a bit of a joke about it with the doctor but all he is happy about is that I am looking well and better than I was in 2003 and have come a long way since then, what with going through 2 bad long stays in hospital in 2003 and last year when I ended up on life support. I also had a chat about my eyes as I was worried because as my eyelids are droopy, they tend to alter my sight like I experience double vision on close up items such as if you put something close to my face, I would see 2 of them! I am ok on items that a further away but it also depends on how I tired I am. Sometimes, when I’m talking to someone, they always seem to go for my ear or come as close to me as possible so they think I can hear them when really, the best way for me is if they were a bit further away from me so I can see their face, although not too close otherwise I will be seeing double and I have so see their mouths and lip-read so I don’t miss anything. Mostly, if people come too closely, I just take a step back but if they keep moving closer, I have to tell the person I’m talking to stay where they are because I can’t tell what they are saying because I don’t want them to think I’m being impolite by moving away from them when they are talking to me!! I also weighed myself while I was at the hospital too and I was just about still over 8 stone so was pleased about that because as long as I’m still over that 8 stone mark, my body will still look healthy than it was at the 5 stone mark.

I’m really enjoying “Celebrity Scissorhands” which is on UK television on BBC3! It’s a TV show that has celebrity’s try to train to be hairdressers and also do beauty treatments under the a real hairdresser, Lee under for 4 weeks, The salon is treated as it is a real salon and each celeb has to do their own creative cut & the best two go head to head to determine who will win on the live show on 14th November! People can apply to go to the salon while it’s open & whatever treatment they have, they pay what they think that treatment is worth. It’s all in aid of charity “Children In Need” which is an annual day, always on a Friday in November which gives everyone a chance to dress up or do silly things! You can get sponsored by people and the money goes towards it! Although what I’m slightly annoyed by is that for the last few years, I’ve heard that that the charity were going show a short video about cochlear implants (because it helps children to hear) on TV live which is on all night but they never do! I spend all night waiting for the video to come up but they never let the video go ahead because it’s slightly controversial… I did complain about it once and that’s what they told me….! I think I will probably expect it to come up on 14th November but I don’t think it will.

Looking forward to Bonfire night display on Saturday woo!
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