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


29 March 2012

Stretch marks


Another thing i have to deal with is stretch marks! because i put so much weight on in so little time the skin has stretched and left awful marks on my boobs, tummy and lhighs but it comes with the territory! no pain no gain im using some oils to try and make them fade or get them better again!

26 March 2012

Newcastle 2012....

Sunday
Me and the parents made our way up north on sunday we stopped off at Middlesbrough to see my nana and family. My cousin is expecting a baby so we gave him some gifts for the baby my nana gave me a tenner in pound coins bless her haha then after an afternoon with the family we left to set off to Newcastle where we would stay at a premier inn overnight we brought syringes to flush my peg and a dry box for my cochlear implant i used disposable batteries so i didnt have to bring the recharger up.
We went to the pub connected to premier inn and i had a lovely fudge cake and a cola and my parents had their meai i then went to my hotel room while parents stayed in the pub having a drink i watched dancing on ice final then my parents came back to the room and we went to bed after coffees and tea at 11pm. Mum said it was the best nights sleep i had at a premier inn i always got up to go to the toliet or would'nt sleep normally but i had a full day visiting family so i was tired out!!

Monday
We got up got dressed and ready with snacks for the long day ahead of us and we drove to the hospital and parked in a disabled spot.  The first port of call was going to the cafe to get a cup of tea and meet jonathan the guy who helped me make the decison to have the brow suspension and we had a chat

Me and jonathan


I then went on to the day unit neurology where we met Professor Doug turnbull with a meeting with dietitian and junior doctor and we discussed how i was getting on with my life as i was quite depressed and down the dumps last time i was up there so he was happy to hear that i was more cheerful! We discussed the PEG feeds and that now im a healthy weight and eating orally, he wants to me to stop the feed overnight as he worries that i would get reflux (sick ) and cause a chest infection which we dont want.(pnuemonia and septisemia nearly killed me) nstead he wants me to use a syringe to put the feed through the PEG on a morning as thats all i need. We discussed exercise and how it is helping but i must pace myself and not overdo it. i have to know my limits.  Doc Turnbull also asked to see my cochlear implant and was surprised to hear that they go back as far as 1994 and that ive been implanted for 17 years now!

We also noted our problems we may have when the benefits finally get round to us and our interview as we were very worried they would take our benefits off us and send me out to get a job when im really not fit enough to have a job. Doc Turnbull reassured me that i would not have my benefits taken off me as im a genuine mito patient who cant work as i get so tired one day and fine the next so how can i work ?
We have heard stories that if you can lift your arms up a certain height or walk a certain length of time you are fit for work!! so we voiced our worries to Doc Turnbull on this and said he would write a letter to the highest person in the benefit unit that i am not fit to work because i have a mito condtion so we were pleased and reassured about this.
We discussed the patient information day and i said i would be intrested in coming and meeting some other mito people and going to workshops as well as talking to doctors in mito. I will meet jonathan and susan Warwick and Faye Wiley if they are sitll going.

I went to get a blood test  and they took about 6 vials of blood ill get the results in a letter

Me with Professor Doug Turnbull

We went on to the eye department to see Patrick who takes over from Mr Griffins who did my original brow suspension. We discussed how the cysts had keep coming back on the left eyebrow and that the doctor who removed the cyst at huddersfield didnt want to do anything further til i came to newcastle as thats where i had the brow suspension. Patrick looked at  my eyes throughh an eye machine the kind you get at optitians and  he wanted a second opinion from a plastic surgeon so we had to wait half an hour before he came and then he had a look at where  the cyst had been on my left eyelid  and the overall brow suspension and he said its worth taking the stitch out as its irritating the skin so the cysts will keep coming back. So he wants to take the sillicone tube out  in 3 months time and then redo the brow suspension when the eyelid has healed.  He said its the only way round it  so i was prepared for some kinda op or procedure  that had to be done to get rid of the cysts. 
The waiting list is 3 months so it will be june time he said the eyelid would droop a bit since the silicone isnt holding the lid up but the doc said he can redo the brow suspension on the left eye again when the eyelid has healed so thats ok im prepared for that. Nothing ive not gone through before!
He also gave me some drops to take 6 times  a day to lubicate my eyeballs and how to clean sleep from the eyelashes with a cotton bud.  He wants me to carry on with the hot compresses and the microwavable eye conrpress.

We were then free to go home and we were starving as we hadnt really had anything to eat all day apart from a bite to eat at the cafe before all the appointments!  So we went to McDonalds for a a bite to eat I had a happy meal with a beef burger n chips which was yum!!

I saw a lovley sunset while we were driving home ill put pics on another time as they are on my phone!

So thats all the news from Newcaslle for a yaar well until the patient information day in April that is! That will be good to go to meet other people who have a mitochondrial condition and support etc

22 March 2012

Gym...

I woke up feeling prertty full up and bloated so i avoided my usual tea in the monring and had a rest for it to go down! Victoria my carer who comes every thursdays came to pick me up and take me to the Huddersfield town stadium gym. We signed in  and started the class. There were chairs in  a circle with an exercise sheet behind them. We started by doing excercises sitting down following a trainer then we  went on the next seat to do the excercises behind the seats after one minute of doing that exercise you would move on to the next chair and do that excercise!
i enjoyed it and am looking forward to next week but my legs are like jelly now so ive been relaxing tonight!
M e and Victoria went to costa to have a cup of tea and a gingerbread man then we wernt home to chilld out out in the garden.
im looking forward to next weeks excericse sessions but i will have to change my feed dates areound so i dont feel so bloated on a thruday but over all a good day all round!



17 March 2012

Cochlear implants what to do and what not to do...

These are the what to do and what not to do with cochlear implants my tips of which i have learn over the 17 years

The to dos
  • do keep you ear clean and healthy if you get an ear infection alert your doctor and the ci centre
  • Do wear it at all times besides sleep and bathtime as thats the only way to get the most of your cochlear implant
  • do look after your cochlear processor i put mine in a dry n store overnight or when im not using it
  • do have fun with your cochlear implant you can decorate it with skin its
  • do let people know you have a cochlear implant so that they know to talk to you face to face (there is no shame in asking for help)
  • do let the cochear implant know if you are having problems with your map dont suffer in silence  they can change the map for one that you are comfortable with
  • do be careful with the cochlear implant area if you are going on a rollercoaster or swimming take ti off (unless you have the neptune AB implant then you can swim with that!)
  • do have fun a cochlear implant wont stop you from having a normal fun lifestyle as anyone else can
  • do take it off for MRIs and contact sports
  • do carry spare battierites in case you are caught out and the batteries run out (i have reachargables for the day but if im goiing out for the wekendd i use dispoables and take them in my bag just in case)
  • Do keep your cochlaer implant ID card on you at all times to show anyone ( for example i went in a shop and the metal detectors went off i had to show them the id card and that i had not stolen anything!!)
The what not to dos
  • dont bang your head or the cochlear implant area if you are worried tell your implant centre
  • dont suffer in silence if you have a problem with your cochlear implant tell someone
  • do not have a MRI scan as this can harm the implant in your ear Xrays and CT scans are ok i take mine off for them
  • Airports - i take my processor off and get frisked instead of goiing through the detector i show my cochlear implant card and take my cochlear off for take off and landing, (i take my cochlear implant processor off for the duration of the flight that just my prefeence you dont have to do that)
  • Do not go near high power cables
  • Do NOT use any elecrical applicants such as TENS machine if in doubt call your cochlear implant centre
if you follow these rules there no reason why you cant have a normal life with a cochlear implant! HAVE FUN!! :)

15 March 2012

Gym...

i went down to the local football stadium where they have a gym to find out about diong light exercise classes with a personal trainer. i went down for my inducion today i went down with my friend victoria and we met holly one of the trainers there she went through an interview about what kind of exercise i can or want to do and took my blood pressure. She gave me a sheet to get a gym card whcih ill get next week and what kind of classes were available for me. We would start off with light exercise to not exert myself etc... she showed me round the gym n changing rooms and what to do when we come in.
i can just go in afternoon or evenings and just use the gym with my card i had a head start because i have been doiing short walks and 5 mins on the exercise bike so she was pleased about that. the goal is not to lose weight but to tone up and get my msucles working. Me and victoria saw one of the huddersfield giants rugby players and burst into giggles! haha good to have a girl mate to giggle with again! ill let u know how i get on next week

Personal trainer...

I will be seeing a personalrainer tomorrow at the local football stadium which has a gym the goal is to go down there with Victoria  my friend and help on thrusdays and talk about  a plan to do light exercise. I am currently only doing 5 mins every other day on the exercise bike and a bit of zumba now n again but i try not to over exert my self otherwise ill be stiff for a week! I'll nlog about it tomorrow and let you know how i go.

12 March 2012

Lower Vicion...

I had an appointment to see a doc about my lower vision, same doc who did my cyst op. I saw a nurse who showed me some vision gadgets to help me read small print in papers, magazines etc  she said take them away and try them out, if i like them i can keep them if not give them back. I got 3 different type of magnifers plus one that one that hangs round your neck so I can do my cross stitching as i havent been cross stitching lately because I cant see the stitch  pattern very well as most kits I get have small letters so its hard to read them.
We then saw the doc who did my cyst operation and took a look at it and said we will leave it to Newcastle to look at it because thats where i had the brow suspsnion and she was worried about when she removed the cyst it was rather close to the stitches under the skin so she wouldnt dare go anymore and she said she will see me again in 6 months time to review it. Then we waited about an hour for an ambulance taxi to take us home.  My dads away with work tonight and brother has gone back to uni so me and mum are having a nice cosy night in.

9 March 2012

spring is here...

Spring is here at last! The sun was out this morning so went to sit out for an hour or so and just had the sun on my face it was very warm and now i have rosy cheeks hehe
Im thinking of planting some giant sunflowers and tomatoes!
The occupational nurse came round this afternoon with a seat for the bath to help me get out or just use it as a stool for my feet as i have to keep my feet elevated. hehe

8 March 2012

sicky sweats...

I felt a bit sick this morning after i got up as I had been on the feed overnight for some silly reason i thought it was wednsday today instead of thursday so i thought my mum was at work so I took my own feed off and shuffled to the bathroom feeling really weak. I had to come downstairs with my tube still in because mum had left the sterile water downstairs so i shuffled back upstairs feeling really faint by now  I had a lie down and did some breathing exercises to get my heart rate slowdown again because it goes like the clappers when i have sweats from the feed. I feel all my back is wet from sweats so after a lie down for 10 mins i felt better and mum pops her head round the door and tells me its thursday because i was shocked to see her!  I usually spend the morning with no food at all to let my stomache settle down but i can have my cup of tea and relax now.

7 March 2012

mental hospital..

i have done a huge 360 on staying in my room al day with no sleep to sleeping well again i had been awake for a week when they sectioned me to  a mental hospital and they werent particulary nice in there! i was sectioned because of my not coming downstairs and staying in my room all day with no tv on and no cochlear implant on. This is the first time ive talked about this on my blog because it was quite personal. i went through  depressive state because of my conditon and isolation and had no sleep for a month and i started staying in my room with no tv on and no cochlear on. M y mum threatened to sell the laptop or send my cochlear implant back to cochlear centre if i didnt use them!!
i was sectioned by doc and sent to a mental hospital which was a horrible experience. i was supposed to be in 28 days but i was in for a week because it wasnt the right place for me. They had no clue on how to handle my cochlear implant and my peg feed. i had to show them how to use it. My room wasnt so bad it had an elecric bed with en suite which i asked for because of my conditon. My parents brought in a tv to watch not that i watched it, i was too busy asking docs or ppl o in night  shift to do my medication on time which wasnt easy because it was a different person all the time.

It wasnt a nice experience in there  beccause i was treated appallinly. Not only did they know how to sort my feed out they had to bathe me in the shower which was pretty embarrasing and i  had the experience of a lady just not caring about me in the shower and just basically putting me in the shower and drying my hair. She had no bedside manner at all! i was basically thrown around like a rag doll!  When i went for walkabouts i saw people who were much mentally ill than me and i didnt think i should be in that situation.
There was a day where they took me to the play room where there was snooker or arts n crafts and when my cochlear implant low battery beep went off.  I begged the lady who took me there to take me back to my room so i could change my battery but she refused. She eventally took me back to my room after 5 mins of pleading with her. I came out of that mental hospital stronger and glad to see the back of it and back with my parents and brother and back to home comforts. They have since apoligized for the section saying it wasnt the right place for me to get better. instead that place was at home with my family. I have since got better and sleeping through the night and even staying up late using my laptop again and using my phone with gwerty board on it.
i am now helping mito people and cohchlear implant people with their experiences. Everyone of them is different but we suffer in the same way. Im glad to have an outlet to this on facebook where i can talk freely to ppl about my mito conditon and they wont judge me,  I am talking about htis because there might be other people in my situation who are depressed and alone. I;m sitll on anti depressants medicationn but I am in the process of being weaned off it which is a big step forward. I wouldnt have got through it without my parents support and visiting me in that horrible place. It was a familliar face. I hope that no one has to go through this situation and i know how easy it is to be isolated when you have an illness. Tbankfully i have a friend who comes every Thursdays and takes me out to places i want to go to or just stays in with me to watch a movie. Most ofmy friends work or at uni so i dont get to see them often but i talk to them a lot online.

6 March 2012

Light exercise...

I went to my GP with water rentension on my ankles and she showed me some exercise to do which is when you cross your legs cirlulate your foot to move it. My ankle seems less puffy but i still have to continue exercise.
My  mum bought me an exercise bike off ebay on saturday so i do 5-10 mins on that a day
I am also getting taken by Victoria my friend to the football stadium which has a gym too and get a personal trainer to help me with light exercise because light exercie can help the muscles keep going beacuae when im sat down all day i stiffen up and need to walk about to  shake it off. My feet get quite numb too depsite walking about but i cant do anything about thatthat even rubbing them hurts like hell.
but we will see how the exercise goes! i get out of breath quite quickly which doesnt help!
I was never much good at PE at school but i got an easy ride beccause my best friend was disabled and we just played table tennis or bowls!
Spring is coming now i can see baby daffodails and birds coming to our new bird feeder! will have to get my binolculars out and see if i can see  a robin becaue we usually get them round our parts and we also get the odd squirrel and pheasant!

5 March 2012

Cyber bullies...

The internet is a big place and its easy to say things you cant say in person because they are hiding behind their computer screen.
I for one have had cyber bullies in the past and most recently on facebook; They think they can get to you by saying nasty comments but i have a secret weapon! The block and delete button!! If only you u could do that in person haha.
Cyber bullies are cowards who have nothing better to do with their time than hurt other people. Its easy to say something that would upset you such as "you're anorexic" or "what the hell is wrong with your eyes" if they knew the story behind it they wouldnt be so nasty about it.
I  am a big support to my friends on facebook and in person and im not going to stop living my life how i want it because of one comment when the positives outshine the negatives.
I live my life how i want it and i have a laugh about my mitochondria conditon because if we didnt we would cry and be depressed. My friends who know me well know im not that sort of person and im  a positive person who wants something good to come out of a bad situation. I dont judge a book by its cover because you dont know the story behind it. The cyber bullies could  say "you're fat" how do they know they are trying so hard to lose weight??
So the moral of this story is cyber bullies THINK before you write a comment! You never know who your hurting with your words.
I will keep on fighiting them and i will come out on top

3 March 2012

These children are going through mitochondria diseae. It can affect yuong and old people amd there is currently no cure for it.
Say a prayer and give your support to Mitochondria dsease  and help fund reserach towards it.

2 March 2012

Swollen ankles...

I've been to the GP today about my swollen ankles. She agrees that it is water retesion and told me some things to do to help it such as just rotating the ankle a few times a day, go for a short walk and exercise.
I am already going to the stadium gym to find out about some light exercise so that should be ok.
Its not doing me much good sitting in my chair all day and night on the laptop so she said get a stool to put up your legs and raise the ankles so they go up the leg.

1 March 2012

water retension?

I had a good afternoon with my friend Victoria and she painted my nails greeny colour. Now that the sun is coming out a bit for spring we might go out for the run in the car sometime and enjoy the sunshine. Victoria is my friend who gets paid by the council to spend an afternoon with me doing whatever really and gives my mum a break to go into town or something. Shes closer to my age so its good to spend time with someone that age and we have a laugh.
After victoria had gone the occupational lady came to discuss exercises and whats going on with physio. I have an appointment to go to the local football stadium to see a personal trainer and do some exercise and strengthen my arms etc...
She was worried about my ankles which have been swolen for a week so will go to the GP tomorrow and see if its water retentsion or something else. I told the occupational nurse that i fell over in Blackpool coming down some steps after going down so many my legs just gave way! and i twisted my ankle i dont know if its connected but the left one is worse which is the one i twisted! so will see what gp says about it.