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.

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

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.

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.

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!

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

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.

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.

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.

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!