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 which I have had since birth but I didnt find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then 15) I lost the 1st cochlear implant in my right ear after 7 years due to a bad, accuring 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


30 September 2008

Curious PEG...

I’ve had people ask about WHAT is a PEG? and WHY do I have it? What is it used for etc? so I have done a Q and A to answer any curiosity about it. It may look freaky, but it's nothing to be scared about. I was unsure about the decision to get a PEG and thought long and hard about it as I was 22 yrs old when I got it and who wants to lumbered with a tube coming out of their stomach but I felt I had to go for it in the hope that it might help me put some weight on and make some parts of me a bit better...


What is a PEG: PEG stands for percutaneous endoscopic gastrostomy shortened to PEG.
What is it used for: It is used for different kind of medical conditions where a person may not be able to eat or swallow for a short or long term period of time.

Why is it used: A PEG is used to help the person using it receive essential vitamins and nutrients that you may not get from not eating or because you can’t eat due to a medical condition.

Where a PEG is placed: A PEG can be used to in 2 different ways. For short term, a tube can be put down your nose and into your stomach which is put there by a doctor. For long term, it can be a tube put directly into your stomach through your stomach wall which is put there by surgery. I have had the nose tube in 2003 for a month & had it successfully taken out. I now have the PEG in my stomach and still eat with my mouthh too.

How long will I have it? It can depend on the person and the situation; a doctor would prefer you to have it as short a time as possible. I have had mine for a 16 months and it has done me the world of good what with my weight although I don’t know how long I will have it in for.
How am I fed: I can still eat by mouth and I get fed 2- 3 nights a week at the moment by a pump that pumps the liquid food in to my stomach through my PEG.

Does it hurt? The nose PEG can be uncomfortable when you have it put down your nose but after it’s in, you hardly feel it. The stomach PEG can be a little trickier as it is done by an operation so you can feel a bit of discomfort in your PEG area afterwards and because it’s an open wound, you can be vulnerable to little infections in the PEG area which can be a bit sore which are rare if you look after it. You are also aware that it’s a tube coming out of your stomach so if it catches on something, it can hurt. I always tuck mine in whatever trousers I have on! My feeding over night is ok too because I don’t feel anything.

Why was I give the PEG: My doctor suggested giving me a PEG because I wasn’t getting enough nutrition and vitamins because I’m a fussy eater due to the way I grew up and ate easier foods due to my mitochondrial condition and the possibility that it might help me put some weight on as at the time I was 6 stone. I’m now 8 stone.
How do I look after it: I look after it by flushing the PEG with sterile water with syringes I get from hospital every morning and night. I also flush my PEG before I put my feed pump on. I also keep the area of the PEG clean so I don't get infections.

What the PEG done for me: it has helped me gain 2 stone of weight and look much better in myself than I did (I’m now 8 stone)and it helped stop my occurring ear infection that I had for years.

29 September 2008

Failure...

There are times when I feel like I’m a bit of a failure because of the way I am now. I know my family put up with a lot with me and how my OCD is and that makes me feel bad about myself because I just can’t snap out of it although I really wish I could. I see friends or my brother going to university and I can’t help but think “did I miss out on that?” “Was I put in the lower classes at school because I was deaf or because I wasn’t smart enough to be in the higher classes?” or “What are all my qualifications from school and college for if I can’t cope with a job?” I love my volunteering but sometimes I wonder what it would be like to earn my own money and work my way up in something I really want to do, but I know at this point in time, I could never cope with the responsibility of a part or full -time job because I’m so tired and I have my hospital appointments. Most of my friends that DO work wish they had my life because I don’t work, have lie ins and basically have all the time in the world to do what I want to do but where does that get you in life? Nowhere!
Maybe one day I’ll learn to be responsible for myself and learn how to pay bills and things like that and come to the point where I might be able to live independently and not rely on my parents to look after me as I feel like my mum is my carer rather than just being my mum, I don’t see that coming anytime soon yet though. I can wash up dishes, clear up after myself, just about make a sandwich but I could never live on my own. I would find it so lonely and I like company to distract me. I know I’m so lucky to have such great family and friends who would do anything for me. I love them all very much but I don’t want to be seen as a nuisance to them and feel they HAVE to look after me. Sometimes, I rely on my friends to look after me because even though I’ve lived in my town my whole life, I don’t know every part of it and I can go places on my own but because I don’t know where some places are, I like to go with my mum first or someone I know first then I’ll go on my own after that. I would have to trust a friend very much if I was to go somewhere out of town with them and I have never been abroad with anyone else but my family. I always found it hard to go on a train in case I miss a stop, because I can’t hear announcements of where you are and what the next stop is as they aren’t very clear because they have an echo to them. I can cope if there’s like visual announcments on the trains that tells you what the next stop is but not every train does that. Oh well, I’m sure I’ll learn…

26 September 2008

I think I'll take a walk...

Today, on a fine sunny autumn day, I went in the garden to feel the warm sun on my face and after sitting on the swing chair for a bit, I decided on the spot that I would go for a walk! (Believe me, it doesn’t happen often!!!)) There’s a cemetery across the road from us and it’s got a steep path upwards so when you get to the top, there’s a great view and it’s really peaceful. There was hardly a cloud in the sky and I decided to take a picture of the view and of Castle Hill which is a famous landmark in the town I live in.











Good exercise going up the steep hill too for me as it works my legs! I took a seat for a bit and took in the view for a few minutes before going back home. It may sound weird that I like walking around a cemetery but I’ve lived opposite it since I was 2 and I think nothing of it, I think it looks all pretty sometimes with all the flowers and the trinkets they have hanging on the trees. I grew up with my parents telling me the dead can’t hurt you, just the living but I would never walk up there at night!!!
Death is never a happy subject but a cemetery is a place where you can reflect on memories, a peaceful place. I also found lots of conkers on the way to the cemetery too!!




24 September 2008

Happy days...

I have had the best day, what with volunteering at the school, which may only be a short bus ride away from where i live but even though its baby steps, it’s making me more confident and independent for the first time since I found out I had my mitochondrial condition in 2004. I’ve been helping out in the classes again and gaining social interaction with both adults and children. I am really looking forward to the Arts & crafts week that we have coming up which will be lots of fun!

I also have my first part of my story on The Deaf Blog, and feeling ultra confident and super happy with my life at the moment as it is now. I have my brilliant family&friends.
I can’t help wonder if there’s a storm brewing though what with my OCD because it’s kind of unpredictable! I don’t know when my cognitive behavioral therapy begins as there’s a waiting list but I’m NOT looking forward to it!

My confidence can be good most of the time till it comes to the OCD which when something happens, it kind of ruins the good stuff that happened that day! So I’m really going to try and beat this OCD although I know it will be distressing and upsetting!

I hope I can maybe have a holiday next year too since I haven’t been on a real holiday with my family since I got my PEG in may 2007 because of the amount of stuff we have to bring with us like the pump and the feed etc. I have only had weekend getaways which I still love like trips to Blackpool but theres nothing like going abroad! Hopefully I will be getting closer to the point of getting my PEG out for good soon but thats down to the docs!!!

Oh and I also changed the blog around a bit so it looks a bit better now. I will hopefully also get a better picture for the blog!!

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
!

17 September 2008

First day Volunteering...

My first day volunteering at my junior school went well! I had to brave a little steep walk up the path to the school which left me out of breath! At least it's some kind of excercise I am getting! At the school, I helped a little boy who has a vision impairment and my job was to help him do some writing work on the computer then for my next job was to help in the classroom, I handed things out to the children and listened to some of the children read their books! It was a job listening to them as it was a busy classroom with lots of noise but I managed to keep on what I was doing! One of the children had a very quiet voice! It was very enjoyable and I got on with the teachers well! I don’t know what I was so nervous about but I’m a born worrier anyway! I’m sure I will enjoy more time volunteering at the school! I’m sure I will gain a lot of social and self-confidence there too. I summoned up the courage to ask about things I weren’t sure about and even corrected a teacher when she got my name wrong over a busy classroom! I learnt that I’m more confident than I think I am but don’t often show it! I hope that things will go just as well as time goes on and my confidence will continue to be on the up! It certainly makes it easier that it is my old junior school because it’s familiar ground and knowing some people who work there.

16 September 2008

A Little Update...

I start my volunteering tomorrow afternoon at my old junior school and got up early today so I can get a good night’s sleep tonight so I'm refreshed for it! When I was putting my cochlear on this morning my brother came in to my room and he was talking his normal tone of voice but my CI was up REALLY loud! Haha I must have adjusted my volume when I was putting it in the protective box last night before bed (I always do that before I go to bed so it gets rid of any moisture & keeps it safe) then when I adjusted my volume back to my normal between 4 and 5, my brother started whispering as to think I put it down too low!! A right joker sometimes my brother!! haha. Once last year, I panicked that my Cochlear Implant wasn’t working one morning- I switched it on and off several times and tried it again and checked I had batteries in (which I did) but I must have left the CI processor switched on all night and the batteries ran out!! DOH I got myself into a right state too because I was meant to go out with friends that day!!! Once of my bad points of having my CI is I worry about losing it after I lost the last one i had but I have peace of mind that my CI doctor is keeping a close eye on it after what happened and at least I and my family know how I lost it in a way (my condition being a factor to the long time I had the ear infection)

A bad update is I’ve been a bit sore on my PEG site on my tummy and I could hardly move without it hurting and it’s like a sharp feeling as if u have a piece of glass in there so it’s not been nice feeling like that! It’s all better now since my mum put some cream and a bandage between my stomach and the little piece that’s stops it going inside my stomach! MUCH relief!

10 September 2008

Old school memories...

I had both my appointment at hospital and interview at my old junior school today (for volunteering see post Moving on) I wasn’t keen on the hospital appointment, but the interview at the school was good. It was great to see my old junior school and how everything’s changed since I left. It has certainly improved since I was there and lots of new teachers! I start next week to see how I get on! Hopefully I can gain a bit of self confidence in myself rather than asking people what I have to do. I’ve always been a follower of people so to move into being my own boss in my head will be different but it should help my self-confidence. I’m going to be helping the kids with their work so hopefully I can follow the lessons!!! It’s been a while since I’ve been at school learning different subjects! My mum has told me I should use my initiative and learn to do things by myself rather than wait for someone to help me! I just hope I can and don’t feel a bit lost!! The head teacher showed me around the school and told me if I miss anything in the class just ask! Also the kids were very noisy talking amongst themselves so I hope I can overcome it all and listen carefully! I think the head teacher was impressed with how I cope with my cochlear implant and my speech!

I also think that I might ask If I could get a lead to connect to my laptop to my cochlear implant so I can listen to music although the problem with that is I will only be able to listen to the music directly to my cochlear implant so that means I cannot hear what is going on in the family house, like my mum shouting me for tea etc. I had a lead on my last cochlear implant but I never used it because I preferred to listen to everything really! The music, the humdrum of my house and family talking basically all the wonderful sounds you can hear with the cochlear implant!!!

7 September 2008

Phone Antics...

Since the topic of the moment for CI’s is using the phone, I have never used the phone much even with my Cochlear implant because I tend to text people more. If you get a good clear phone which you can change the volume, then you are more likely to hear what people are saying on the line. It took me a while to come to use the telephone at home when I got my CI because I wasn’t used to using it and talking to people on it. Although now I can pick up the phone whenever, and call whoever I want, I can still miss what people are saying on the phone even if it’s clear and I have to tell them to repeat what they say. If it’s a new person who doesn’t know I’m deaf, I just tell them that I’m deaf and I can have problems hearing on the phone sometimes and they understand if i have to ask them to repeat what they have said.

When I’m on the phone, I am often told to speak more loudly because I have a quiet voice, although when I’m off the phone I’m always loud! I also sometimes use the speaker phone on my mobile or the land line just because it’s easier! I speak to my nana a lot more now when she calls because she lives in Middlesbrough and I don’t get to see her a lot of the time. I wish she lived closer though because she’s so funny at times and I love her!
Another reason I don’t use the phone to talk is because most of my friends are on MSN and I talk to them more on that than the phone. If they aren’t on MSN, we are always texting!

6 September 2008

The cold creeps in...

Last night and today, I felt the first prang of coldness since September started and it took me ages to warm up once I got to bed! What with summer over now, I now have to prepare to wear more layers of clothes for the autumn and winter. I may have put a stone to my weight, but because I have a low weight than the average person of my age, I tend to get cold at the slightest draught coming in the house or if I touch something cold and it takes me some time to warm up! I tend to wear a lot of layers when I’m cold and then when I finally warm up, I have to take it all off coz I all hot again!! So when I’ve taken it off, I get cold again and need to put my jacket on again! Winter is the worst season for me because I can’t stand to go outside because it’s so cold and my feet seize up and go all freezing when I’m waiting for a bus for 5 minutes! My feet & hands are always the coldest because of circulation so they take longer to warm up! People mostly comment on it and I wonder who will ever want to hold my hand because it’s freezing??

My chair that I sit in at home to use my laptop, it’s by the window so when it’s sunny its nice and warm but when it’s cold its always cold and draughty even when the curtains are shut! It took me a year or so to gain my weight and it has improved my overall look but I only got very warm in summer but still finding it hard to warm up in the colder seasons! I have my wheat bag teddy (its shop name is beddybear but i call it benny bear!) which I can microwave and warm up and hes so toasty and cuddly! He’s a life saver when I’m cold!

4 September 2008

Moving on...

I have been feeling a bit sorry for myself lately so I’m going to do my best to try and pick myself up again and get back to the confident girl I used to be! I know my friends have their own lives, careers and friends going on so I’m always trying my best to make more new friends. I spend most of my time being at home watching TV or being on the internet talking to friends, so I think I may just start doing another latch hook rug to keep me busy! I’ve been staring at the same 4 walls at home now for some time and its becoming my safe area where nothing will hurt me but that’s where it’s going downhill because its giving me time to think too much and make myself worse! I need to find a way to get out of the house and my predicament before I go even more bonkers! I may write to my old junior school and see if they want any help with the kids which is a good start because its familiar territory . I don’t want to spend the rest of my life sitting at home while everyone I talk to is out there doing something worthwhile with their lives! I may have gone through a lot but my family always tell me there’s always someone worse off than me and just as well because I feel very stupid and guilty at that point! I hope to look forward to the future from now on and try not to think too much about what might happen.
I’ve always felt like if I lost my cochlear implant, my world might end because I’m so used to it now and I wonder what might happen if It ever did lose the one I have now but I don’t ever want to think about that! I don’t know if there ever might be a possibility of having another cochlear implant depending on what happens, for example, I lost my last cochlear implant because I caught an ear infection which led to lots of exploratory operations over the years and it’s left the inside of my ear a bit screwed up plus a bit of scar tissue behind the outside of my ear. Although, the ear infection that led to me losing that cochlear implant was a freak accident and it should never happen again. My mum is always telling me she thinks my cochlear implant was dislodged when I ran into the exit door really hard at Sainsbury’s when we were shopping, and me being stupid, I ran into the door at full speed thinking that the automatic door was going to open but it turned out to be the exit door and you had to walk through it the other side for it to open, I don’t know if that might have caused it or not but at the time when I found out it had to be taken out after an exploratory operation, I was so devastated. I moved on because of the possibility of another cochlear implant in my other ear so because of that, I occasionally wonder what would ever happen if I lost the one I have at the moment too. I know my condition (Multiple mitochondrial DNA deletions) was a factor that I couldn’t fight off my ear infection but because I didn’t find out the condition till I was 19, i can’t help that wonder if my CI surgeon knew that I had the condition when he found out about the ear infection, it would have saved me all the trauma of the exploratory operations. I don’t have any regrets about the choices I made to have those exploratory operations because at the time, I didn’t know I had my condition and I thought my ear infection would eventually clear up. All that said, I hope I will be able to move on from everything that’s happened and concentrate on living life to the full!

2 September 2008

14 years of sounds with a cochlear implant...

Even after having my cochlear implant for 14 years now, I still find myself saying “what”? or “what’s the noise?” to a sound I’m unfamiliar with or have heard it before but it sounds different. I sometimes have to say “what?” or “sorry what was that? Sometimes it’s because I’m not concentrating on what people are saying or I just simply miss what someone says. I can sometimes hate it when I can overhear what people say though, like if I’m in the kitchen and they don’t think I can hear but I do…

I love finding out new sounds though, and wondering what they are…
For example, I sit by the window most of the time with my laptop, suddenly there would be a quiet tapping sound against the window. I’m confused because there’s no one at the window and then it dawns on me it’s just the rain!!

Once, I stayed up late one night, as we young ones do!! In my room this summer, I heard a strange sound I’d not heard before, it sounded like a quiet “woooo woooo” I went to bed wondering what it was and the next morning, I woke up and asked my mum what the sound was. She told me it was an owl and it has just moved in the area and it does that noise occasionally. I often spend the night with my window open in summer, in my room, my TV on silent with subtitles to not wake my parents up! This prompts me to hear all these new sounds during the night like crickets chirping, they rain pattering down and thunderstorms!
I love sitting in the garden in the summer reading a book, and as we have a woods behind our back garden there’s always lots of birds singing and even with the faint traffic noise from our road, I just find the world very peaceful and relaxing!

Possible Deaf Networking...

Last night, I wrote a letter to the YCIS asking if it was possible to make a new pen-pal who has a cochlear implant in the Yorkshire area (UK). Tonight, I got an email from my CI surgeon to write an article in the “Hearsay” newsletter which the YCIS write. Although it’s worth a try, I thought it would be better to create a little webpage or a social network where people can go on and write a bit about themselves, therefore email someone else who has a CI in Yorkshire and maybe make a friend for life! . I put this idea to him and he told me to go for it! Now I just have to shoot out some ideas for name for this website! The whole idea is to make new friends with cochlear implants in the Yorkshire area, and since I’m only 23, I would find it ideal for more people in their 20’s to come forward but Yorkshire people of any age would be welcome! I’m not totally sure how I will produce this site yet, and I’m going to shoot some ideas around first! I’m going to speak to some current CI friends I know to see what they want from it and see if they would use it so I know if it’s worth making first!! I find it would be interesting to meet both male and females in Yorkshire with CI’s and get to know them via the site. I’ve always liked to write to new people whether they are deaf or not and find out all the things about them! I have problems meeting new people, deaf or otherwise, I also always hear how some CI users have trouble communicating in group situations as I do. The internet is a brilliant way to communicate with deaf or hearing people with the likes of MSN or Yahoo messenger. So that concludes my idea for now and I hope I can achieve it, I will certainly have a go as it will give me something to focus on! E-mail is always good because some people can be busy and an email is always there waiting for you when you log on!

If anyone who reads this thinks it’s a good idea and has any ideas towards this, please let me know as I could do with all the help I can get if I decide to make it! I will probably be up all night thinking of names now…. At best, I’ve got E-Ci…. Any good? Who knows, it may become a meet/greet place for people with CI’s!!