Merry christmas...

i just wanted to wish everyone a Merry christmas! i hope everyone has a lovely time!
i was hoping to go to my friends house tonight but full of cold and my ear infection is back  in right non cochlear ear :(
anyway everyone have a lovely xmas!

Day after eyelid adustment...

i had trouble closing my eye at first so i was worried if i would sleep! but i acutally got the best sleep id had in ages! it also helped getting up at 5am the previous day!

i woke up to a sore eye again so i took some more paracetamol this morning. it hurts to blink wholey with all of the eyelid because the eyebrow is sore too. but paracetamol is helping! I was talking with my mum this morning and she told me that my eye surgeon had seen more of me as a brow suspension patient than any other because normally he just does one adjustment.  WIth me hes done both brow suspensions on both eyeiids and adjustments on both too. it made me think how bad must my eyes have been and how weak my eyelids must have been. it upset me a little.

 
on the right- a pic of my eye as it is at the moment.

left eyelid adjustment...

Yesterday was ONE LONG DAY! we had to get up at 5am to drive to newcastle for 8:30am. I didnt particulary have a good nights sleep the night before even though i want to bed around 9pm ( which is rare for me!!) so its no surprise i got up feeling totally shattered and not feeling the best! I didnt have any breakfast since i thought i would be sick in the car! but i had my feed through the night so I was ok to miss breakfast. It was bloody freezing in the car too being 5am!

I made it to newcastle without being sick woo! We waited about half hour for the doc to see us. I still had a horrible looking sore scar on my eyelid from when he operated the brow suspension, he told us that it would be fine and doesnt need anything doing to it and it will heal on its own .I was also told i would be going to theatre at half 10 as he had moved us up the list because an adjustment doesnt take that long and we had to drive back home.

 Me and dad went down to theatre with me to hold my hand (mum never comes to theatre with me coz shes scared of needles ha!)  i must admit ive gotten used to locals after having them stabbed in my eyellid and in my head! it kills but not for long! i didnt expect anything from this as it was just an adjustment but i was a little worried as my scar on the eyelid hadnt healed and was still sore. I was right! it did hurt a bit but it was nothing compared to when he did the left eye brow suspension!! At least they were kind about my concerns about my cochlear implant in theatre. Some docs n nurses are not so friendly about that and just want to get on with the job which annoys me.

I was a bit concerned when he put a patch on my eye because i didnt have one on my right eye the last time! but he said he was happy with how it went and i was to take my patch off after 2 hrs or so. i left it til i got home from newcastle.
The patch was to apply pressure and keep the eyelid shut to avoid bruising. I had some paracetamol as soon as i got home because i was in some pain.

2nd op update...

Well, it's been over a week now since the 2nd op and its certainly been harder to get used to my eyes this time round. What with the left one had been very swollen and half closed half the time and my right one wide open! My left eyelid is just starting to open up a bit now but there is still swelling it so it will take a week or 2 to open up a bit more hopefully as im not keen on having another adjustment even if they are simpler than the original op but it just means another trip to Newcastle which is annoying! Ive sent a photo to my surgeon on Friday to let him know how it is getting on but he has not got back to me yet.The right one is feeling better than the left but now and again it feels strained which is a pain!
Every night so far it has been a bit hard to sleep as it feels weird to close my left eye. Sometimes when i closed it, as ive been trying to keep it open most of the day, when i keep it shut, it sort of opens back up again!! I think its just about managed to stop doing that now!
What im hating is the constant watering of my eyes each morning! Im sick of it! it really makes my eyes sore and i have to scrunch them for a bit it takes a bit of time to get them to stop watering. im hoping it will stop soon! im happy with how my right eye looks like now and it's looking promising for my left! (hope i havent iinxed it!) but it will take another 2 weeks or nore before it settles down all togerher!
Today i had one hell of a headache due to my tiredness as ive not been sleeping very well because the watering and the way ive had to be keeping my eyes open so ive been taking paracetamol for that but im trying not to over do it! i dont take it unless i need it!
Apart from all that looking forward to christmas! :D

more swelling...

Today after a good nights sleep in my own bed and some painkillers, i woke up to more of a black eye and swellling! its not painful unless u touch it.

2nd eyebrow suspension part 2,,,

13th november,  i didnt have a good night sleep so i spent most of the night watching TV or walking about to keep my muscles moving. I had JUST drifted off about 6am but 10 mins later, the nurse woke me up to do my blood pressure!!! ohh i woke up with a headache so i had some paracetamol.

The doc came round just after my parents arrived at 8.30am. He told us what to expect and how the operation went well.  He took off my patch to reveal a black eye and lots of swellling. it was worse than the last op as that eye had more done to it. He checked my right eye too and was happy with it.

he told us the swelling would get worse as time goes on before it goes down and he couldnt determine what it would the eye would be like til it had gone down. After that, we were free to go home and i could recover.

2nd eyebrow suspension part 1...

Off we go again! on 11th november we travelled up Newcastle yet again for my 2nd eyebrow suspension on the left eyelid  and the adustment on my right eyelid. We went to the hosptial first to have a catch up as usual with the mito doc! She did the usual tests and weighed me. i was pleased to know my weight had gone up to just over 8st woop! She also told me about the facebook group they were thinking of doing for mito patients and asked if id like to have a part in it along with another mito patient so we could raise more awareness of mitochondrial condiitons or just simply to help the ones that have the conditons so they can confer with people who have the same problems. i jumped at the chance as its something to do at home and keep busy with She also suggested some physio to help me with my moving about more. She told me she would let me know later in time.

on the 12th, we awoke at our Premier inn hotel at 7am!! as me and my parents had to be at the hospital for 8 30am. i had a better nights sleep than lhe last time i was at newcastle. We made our way to the hospital and went on to ward 20 where we were in a new part of the building. i was impressed and the nurses were lovely.
i was given my hopsital ID bracelet and medical notes taken, then the nurse put some numbing cream all over my top forehead for the locals. (i really dont like feeling locals!) then it was a waiting game!

at 11am i was wheeled to theatre and had stinging locals all over my forehead and some ieft eyelid (yes it killed!) it hurt more than last time as i had different numbing cream on.

When i was in the process of having the operation, the doc had a complication with the left eyelid and where the stye had used to be, it had left some scarring so he had to work around that but in the same time some of the things that were done were horrendous!! call me a baby but it felt like he was squeezing my eyeball again!! but i did it and got through it! it took longer than normal. he then moved on to my right eye for the adjustment which wasnt as bad as what i just went through!!

The doc patched me up with a tight eye patch to keep the pressure on it and would see me in the morning to take it off.

2 weeks on from brow op...

My eyebrow op has gone well, any bruisnig or swelling i had  went down quite quickly which I was surprised with! My eye seems more open that my other but I still think it could be more open and just over the pupil but my doc can adjust that by 1mm if needs be in the next operation in November. Im quite pleased with it. I still have a stitch in my head but the ones on the eyelid have dissolved.  I have had no double vision since! I had a bit of trying to look at things more closely after the first few days but that has now settled. i was surprised at how I didnt really have much pain and any pain i had was helped by paracetamol.  My eyebrow was frozen for about a week and a half so my eyebrow woudlnt move if i tried and it was lower that my other one but its all gone back to normal now.

The stye eye that was drained is still a little bruised but i can tell the difference between how open my other eye is now.  im very pleased with it and hope the other op in november goes well too!

Removing of a stye...

I woke this monring dreading this! Id been up most of the night what with my feed going all over my bloody bed again! Mum called today for tubes that have no medicene port and just a port where i connect to my feed because the feed going all over my bed has  happened too many times before!  and i cant sleep in it! So from what the nutritian centre said that they should be able to send some one port tubes! WOO HOO! no more feed over my bed!
Back to my stye! i got up at 8am having been awake most of the night sleeping on a towel, and went off to the local hospital to have the stye drained. The stye has to be drained because with the next upcoming brow suspension op, i need to be rid of it by then. If i still had the stye, the doc wouldnt do the operation because f risk of infection so it would have been a wasted journey!
So we told the nurse this stye needs to come out ASAP! she said there was a waiting list for it though AFTER the op which was no good!!!  Then a senior nurse came in and said "I can do now it uf want" we took her up on it because we wanted it out as early as poss so it can heal.

She sat e down in a dentist like chair and put a local in my eyelid which stung and pretty much made my eyelid trickle with blood... she then put some kinda clamp on my eyelid to turn it inside out which was painfully uncomfortable!!! it felt like it was squeezing my eyeball!! she drained the cyst (stye) out and put a bandage on it. after a check up on it after 5 mins and a new bandage to take off after 2 hrs,  i was free to go home. By the time i got home and 2 hrs later, i took the bandage off and it was sooooo bruised and swollen it;s unbeleivable! i couldnt even open it for some time! Hopefully it will heal in time for the opteration  in November. :)  For now i have to put antibiotic drops in for 4 days and see how it goes! Wish me luck!

Bruising from brow suspension...

11th oct-  my eyelid has swelled up a bit and theres a bit of bruising. it feels a bit stiff to blink but its ok and no pain.
My parents say they can see a difference between my right aye and my left eye.

The day after the brow suspension..

9th oct- My parents arrived just in time for the unveiling of my eyelid. The doc came about 10am and told us what to expect. he took off the patch and i had 3 stiches on my eyelid 2 on my eyebrow and one on my forehead.  The doc said it looked good and that he was confident. He told us it would take a few days for the local to wear off and maybe a few weeks to see the final outcome. he also told us that they were disolvable stiches so i didnt have to have them taken out which i was pleased about because they were in a deleicate place.

it felt a bit weird and a bit sore so i took some parecetamol and chilled out for a bit while the nurse came to clean up my face a bit because of the icky theatre antiseptic. She then left to get our discharge papers and give us some drops to put in my eye for a week.

10th oct-  2nd pic - my eye was looking better but the doc said the swelling would come over the next few days. My eyebrow is still low from the local.

1st brow suspension op...

7 oct - We set off to Newcastle about 11am from home and I wasnt really worried about the op  We got there for our appointment at 1pm with our eye doc who said that he would be doing my right eye instead of my left one because the left eye had a stye cyst on it and he didnt want to risk infection. We then went off to a different ward and went to see Victoria, who was one of Doc Turnbulls docs but she was running late so we were in the waiting room as always but before she came I had my PEG button changed  as it was time for my 3 month change .

Once she came up we went to a room, she checked out the usual stuff like the reflexes and and the usual questions that i have every year such as "how is your swallowing and feeding doing?"  just my general wellbeing. She seemed a bit concerned about my right leg as when she did the reflexes my right foot was little weak and she wated to know if i wore a splint in bed  which i never have. My parents were asked the same question when I was in ICU in 2007 as my feet tend to flop forward rather than stay upwards when i lye down.  Victoria gave me some exercises to do with my feet when i can.

After that we were free to go back to the hotel! i had an awful night and couldnt seem to drop off much to the annoyance of my parents.

8 oct -Just as well because I had to be at the hospital again at for 8am!! The roads were deserted which was nice and we could get there quick!!

once we were there, we had to go to ward 21, but we had to go to this eye outpatients ward first and get checked in and given my hosptial band as i was also staying the night as we had travelled 3hrs to get there and the doc had to check my eye the next day. They also asked the usual hospital Questions like a pre op thing. 

The nurse plopped an arrow on my right eye with an  arrow to make sure they have the right eye and then because i was worried about feling the locals, they stuck some numbing cream on me  It seemed like we were there for hours before I was finaly called for my op.

I was a bit terrified but glad i was half asleep to be honest due to the bad night.  They took me down to threatre about 3pm and dad came down to the theatre to hold my hand while the docs put the locals in.  It was really weird because i had my cochlear implant in as they said i could and  my sound went really weird like i was drugged up and in a bubble but i could still talk to the doc while he perfromed the op.

The locals froze the eyelid and the eyebrow  and into theatre i went. i was glad i could hold one of the nurses hands i felt that helped and the doc talking about my hamster Nev!  i felt at ease and relaxed.

There were periods which i didnt like because he put a cloth over my other eye as he worked on the right.

im so glad i had my cochlear implant on other wise i would have freaked out a bit! and im glad i could hear them talk!

After 45 mins in theatre I was wheeled out in a wheelchair to where my mum and dad were waiting outside.The bandage was packed on tight to keep the eyelid in place and it didnt hurt much unlesss i moved the muscles around my eyebrow.

I was then wheeled back to the outpatients again as we were still  waiting to go in our room on the ward.  I was pretty tired so i really couldnt be bothered at the time I think that helped!!

Replacement ci...

When i went to the ci centre a month ago, they said they were going to send me a replacement of my cochlear implant processer the 3g esprit. I wasn't too keen on this but I had my old one for 10 yrs and i really need to change it! Im never good with change espeically in my hearing! Ive even had the same map on for the last 10 years, maybe less!
Ive got on great with the map i have at the moment SO if it aint broke dont fix it!  The only things ive had to change in the last 10 years are my coil and batteries which isnt bad really! They didnt have any silver ones when I went to the ci centre so they said they would send it in the post when they get some in!
So it came last Thursday! and i hated it! lol The first couple of days with it were LOUD and echey although i could still hear everything well. i went down to volume 2 at one point  and started experiementing with the switches on the bottom but no avail then yesterday i changed something at the bottom of my new 3g processor and its sort of clicked to how it was! I dont know if its due to something i've done on my processor or my brain has just simply got used to it already! The only problem i have with the new processor now is that the hook wire keeps clicking out at the top probably because its a new processor but im hoping it will stay in on its own at some point!  Im gona keep the old processor for a couple more days then send it back to the ci centre in their special envelope!

over the cold..

2 weeks , lots of sleep, feeds every night and a presciption of antibiotics and im over my cold! i was feeling pretty crappy and couldnt be bothered to do anything and ive hauled my ass out of bed to do some crafts, washing and chill out. i had a week of feeling very heavy on the chest and strugling to get any kinda air up my nose! (despite using a sniffer) but with the help of some vapour rub under my nose i was finally able to sleep after 3 days of being awake coughing and spluttering! Ive almost finsihed my antibioitcs and im still feeling tired from it all but feeling much better than i did! :) Having the feed on every night helped me too because I hardly ate while i had the cold as the coughing took its toll on my swallowing.. so only after a week of feeds eating nothing i started off eating yogurts and jelly to go down easy and get my swallowing stronger.

only bad news is my mums now caught the cold aw...

it hasnt been much of a summer with all the rain so the cold has been a factor with me and ive had to stay wrapped up nice and warm!

Stinking cold...

Sorry I've not blogged for a bit. Me n Mum have been trying to sort out the brow suspension date out. I've also caught a summer cold which isnt sitting well with me at mo. I'm not sleeping very well because of the blocked nose, sweats and basically feeling crap! I have my birthday on Saturday too! So I'm hoping it will be gone or at least a bit better by then. I've been putting my feed on every night to ensure I can fight it quicker as well. Due to having no sleep my eyes look even bloody smaller! But i guess that what 2 nights of no sleep does to you! I've got a chesty cough but I should be ok because ive got a good cough to cough out any horrible stuff! Whereas when I got pneumonia I was little as 5 stone and very weak so I couldnt fight that off. My parents have reassured me that as long as I got a good strong cough i will be fine :)

I can be a worry wart at times urgh...

Drifitng...

Sometimes I feel like friends are dfifting away from me, I mean I talk to some of them on MSN and things like that ocassionally but some i havent talked to for a while. I know they can't help being busy and getting on with their lives and jobs and it takes a few weeks or months to organize a get together.

I spend a lot of time on my own at home and only mostly get out only for appointmetns to hospital or things like that. i try and keep myslef busy at home doing crafts or things like that, I've even taken up pen=paling just so i can get ou of the house to post the letter! Something to movitvate me to walk the 10 mins there and 10 mins back from the post box. Mum said that's all l need just to excercise my legs and keep them moving. it seems when I walk on my own, I walk FASTER I walk slow there but then I start up walking faster on the way back because my heart is pumping a bit too much due to the lack of energy in my body and i get a bit breathless by the time i reach back home! It's like the faster I walk, the faster i get there and have a break. But it's all good! Keeps my mind busy too! Having too much time on your hands can make you go a bit crazy to say the least!

and in other stories, I saw the finished result picture of my friend's eyelid op, now the bruising and swelling has gone, it looks quite good. I'm looking forward to the finished result of mine although not to the actual operations!! The first is all orgnaised at the moment so hopefully things will go alriight!!

Yorkshire Sculpture Park...

Yesterday, I was woken early by mum (yes I get woken by MUM alarm!) I have had vibrating alarms in the past and I always switched them off! However, I DID get a fire alarm vibrating alarm for my bed which would defo wake me which I hope never goes off because it means theres theres a FIRE! Anyway, I was woken by mum because it was PEG change day, it hurt a bit more coming out today even though it wasn't a studen nurse, it hurt because around the PEG site was sore. It does that occasionally and needs some kinda steriod cream on the skin around it. It didn't hurt that much though and it was quick.

After I recovered from that, parents asked if I wanted to go toYorkshire Sculpture park and get out of the house for a bit. I was a bit grumbly because I was tired, but i went anyway and saw some awesome style sculptures which were all spread out over a few acres of land, It was just about warm to go round for a walk and take some pics. I moaned a bit with all the walking we did becuase it was a longggg walk for my little weak legs to cope. Mum did offer to get a wheel chair from reception but stubborn me said "no, I'll be ok". SO today my legs are sore when I walk about. Anyway, I've learnt my lesson. If its gonna be al long day out, dont refuse a wheelchair! We have a trip to London coming up soon, so parents hired a wheelchair for those long days out. Beats me moaning that I'm geting tired and want to go back to the hotel and ruin my parents day out?

Fears for my Cochlear implant....

Don't get me wrong. I'm proud to be a cochlear implant wearer and would even say it's a part of me now but despite this and BEACAUSE of this, I just cannot go out in public with my Cochlear implant on show. I'm always scared that someone will pinch it, i know it's stupid but I love my cochlear implant too much too lose it and I can't do without it. I wear it 24/7 *apart from bed and bath* as any of my friends nad family know. I was quite confident wearing it when I was a teenager at college but I had an icident in my town where when I was wearing a baseball hat and this awful girl came from behind and nicked my hat right from my head and went over to her mates and played with it on her head showing off. As she snatched my hat from my head, my Cochlear implant nearly went wth it as i had my hair in a pony tail. I had the confidence to go ask for it back but my confidence was a bit shaken when I nearly lost the cochlear implant so ever since I've worn my hair down when I'm out and about in town. Might I was with my 2nd implant too. I've always been scared of losing the outer part of the cochlear implant. If i did, i would be in such a panic!!! Id be so lost without it even for one day! It would be nice to be able to show off my cochlear implant whenever I was out and about and show how proud I am to wear it and I hope i can sometime in the future. This cochlear implant has changed my life for the better and I really don't know where I'd be without it. One thing is for sure though, my life would so very different if my parents never implanted me in1994 when i was just 9.

I also rememeber the fear when my CI surgeon told me I'd lost the first one. I wondered how I'd cope without it and a million things rushed through my head as he was talking. Even If it was only a month til i was reimplanted in the other ear, i think what helped me was having my friends at school coz I was only 15 and i was grateful the school had a deaf base too so I had extra help. It has given me fears about losing my 2nd one though, although I know it's unlikely because I now have my PEG and I'm getting my vitamins and nutrients, so if i EVER got another ear infection, hopefully i'd be able to fight it off. I know I only lost the first one because I coucldnt fight off the infection because of my undiagnosed conditon but I should be able to now thanks to the PEG and the feeds I'm having and now that docs know about my mitochondrial conditon.

I know I am proud to be a CI wearer and I hope I'll eventually get over hte fear of not being able to wear it in public places one day

My choice...

I have finally made my choice about the eyelid operation! I am going for it! I may as well do it if it's going to be done sooner or later! The person who I was emailing about helped a lot and helepd me to make my choice. I'm still scared about the local but I've been through tougher things than a little prick on my forehead!!! SO I've given in to the docs as well. I know it will be good for me in the long run and help to look and see better. As you know, there's stil a 6 week wait and we only called on Monday and we haven't heard from the eye doc Mr Griffins yet so I assume he will send us a letter and let us know what day he will want us up in August sometime. I am prepared for everything that will happen, such as the local and the swelling and pain (which shouldnt be too bad! well i hope not anyway since i have to do this TWICE!) I will post pics although not too gruesome when I have had it done. I really couldn't find ANYTHING to do with brow lift suspensions I am going to have on google. So hopefully people will know what a brow lift suspension actually does when I post pics! I have only ever found eyebrow lifts or brow lits on google but nothing like my eyelid lift ie the brow lift suspension. So I was happy to talk to someone who did but I'm kinda glad I didn't find anything on google.There probably would have been things about it that put me off!! Anyway It will all be worthwhile in the end!

Friends's op...

My friend emailed me yesterday and told me that his brow suspension lift operation went well and hes recovering at home now. He 's told me how it all went and how the pain and sweliling would be like etc..
He also said he would send me pics in a few days and see what it looks like. I am more worried about the swelling and the local which would sting than the actual operation! He said he had a problem due to some scarring on his forehead from a previous eyelid lift operation but he said as i dont have that, mine should be straightforward. I;m glad i have someone to talk to and tell me all about it. it makes me feel a bit more confident about doing it myself.

i am feeling i might actually do this! it's scary but I feel it needs to be done for my vision to be better. Lately all i see is my world through my eyelashes and closing one eye! Im hoping it will make my vision less double vision-y too.

on other notes, I am enjoying the sunshine we are getting and i can just relax in the garden on our swing chair! I've actually had my cochlear implant stick to the bars a few times due to it being metal!! So i always sit in the middle!

The letter...

Got the letter from Newcastle from the eye doc explaining everything I already knew basically and when i read it, it gave me a few scary feelings. When he wrote I would experience bruising and swelling etc. i hate pain! and don't get me started with having a local for it! It's been in the running for 2 years now and I think this year may the year I finally go for it. JUST because I need it. I may not b looking forward to it but it has to be done!

the guy i have been writing to about the brow suspension will be having his op tomorrow. Im hoping he will tell me it doesnt hurt as much as it sounds! but ill wait til he gets back to me on it and then get the ball rolling. after all theres still 6 weeks to get all ready for it! ohh can u tell im freaking out about it??

Im sure ill be fine!

Strong again!,,,

I think i am now totally back to normal! WOO! I'm glad to be moving about more easily and no aches! Well apart from eyes because they have been going totally funny lately... like i have just washed my face and water hasn't gone from my eyes yet then I either blink a few times or give them a rub to focus them again. I am seriously considering the eyelid op now because I'm fed up of not being able to see at times when they go all squinty, then I have to close one eye to focus too. It's strange though because different days, its a different eye bothering me. If it's not one eye, its the other! I'm still waiting on my friend who I emailed who is having the operation done at the end of June and as soon as he gives me a note of how it's all gone, I'm just gonna go for it coz I'm sick of the docs asking and my mum saying how pretty my eyes would be if they were more open..

I've only just started eating the normal stuff I eat now after being on the feed pump every night since I came off the holiday so I'm pleased about that. Although I did have an incident where I nearly choked on a midget gem!! But I'm glad I was strong enough to cough it out!!! It sure made my eyes water!!

I'm also avoiding any football apart from the england matches! Go England! I dont see the point in watching the other matches though!! haha my brother is religiously watching it and has his wall chart! Also I'm so glad I cant hear those trumpet things everyone seems to be complaining about. My parents keep saying it sounds like a drone of bee's but I seriously cant hear it! just the crowd noise on TV.

Right back to my crafty pieces!

Getting stronger...

i am getting stronger every day now, woo hoo i have been having my feed every night and going to bed early coz I am basically shattered of the energy I've been using up during the day. I am now able to walk about unaided and go up and down the stairs unaided which I am happy about because stairs scare me when I'm weak with no energy. I always seem to have one weak leg that might just " go" if you know what i mean. i couldn't even put my own cochlear implant on because I couldn't lift my arms up enough to do it. I can do it now thankfully. Mum never knows where the magnet actually goes and with the hair in the way, the coil kept falling off!

I haven't managed to eat anything full yet apart from the usual water and jelly which is making me frustrated because I want to get back to eating something yummy such as my cakes and snacks! At the moment, i tried a skip * the crisp snack type* earlier but it didn't go well as I coughed when I swallowed it. So I tried a custard yogurt and that went down more easily. I have some antibiotics to clear anything on my chest that might stop me swallowing properly. I'm still happy that I can have my cuppa tea though ahh even if it is through a straw! Its been a frustrating couple of days, but I'm getting somewhere now! ON my feet and doing what I usually do! :D Thank god for my family and the bf! Dunno what i'd do without them!

RSI,,,

argh now i have RSI which is repetivie strain injury from constantly texting mum when i need her because I am confined to my room at mo and cant really go anywhere what with not being weak on my feet at mo. Its getting very frustrating and im having to keep taking breaks every minute during this. I cant even keep my head up either.. urgh please be over soon!

The mito is back with a vengeance...

I went down to Bournemouth this week to see the bf, although not the holiday I intended! As soon as I went down there, i was coming back home 3 days of no sleep, hardly anything to eat or drink later because of my mitochondrial condition, instead of going to the beach or going for a walk with the bf, i was bed ridden and stuck indoors because I couldn't do anything myself. My swallowing was the most worrying bit though because id not brought my PEG pump with me on this trip as id been ok and didnt feel I needed to bring it. I went on monday and I was sent an emergency PEG pump to the bf's house but I still had to go home on the weds because i was no better which is disappointing.

I came home and the doc saw me and told me to start drinking some water with sugar and salt in it. it sounds yucky but u cant really taste it! It was either that or go into hospital and do it by a drip. So Ive been on that since yesterday with no food and just the PEG feed. But i seem to be getting stronger every day after some sleep as well. It can be so frustrating at times as i just wanna be strong again! BUT i have determination! I will do it!

I can't be doing without my tea!! i love my cups of tea and i hate it when i cant have it and have to rely on water when im like this. I managed to have a good walk about the upstairs of the house try and strengthen my legs but im not keen on trying the stairs yet!

We also called the newcastle team who said that 5 other mito patients have been said to have had these aches and cant move or swallow. they said it was down to the hot weather we have been having because the sun takes the salt out of your body and dehydrates you so we need to keep drinking water. im just happy enough to have my tea through a straw at mo! and i have carefully eaten some jelly. so thats good for now.

A wonky eye and pump...

Well, I have had a few ups and downs getting used to the new PEG pump! The first night on it went fairly smoothly and I thought I had got the hang of using the damn thing after the training! Still, we have our instruction page on what the certain words mean on the screen IE... PROG flashing means the pump is not programmed correctly to my feed settings! so it wont work unless it's programmed to my feed settings IE I take 1000 calories over night. A few nights ago on my 2nd try, this time on my own, because me and mum set it up the first time. I got to go to bed at 2.30am this night at the weekend (I blame chatting online! hehe ) so when I went for the pump to start it, it kept going on PROG... and of course I didn't have a clue what it meant at the time and I just wanted to go to bed! In the end I had to wake my poor mum up to show me how to work in AND without my CI on!!! haha.My poor mum!

Also, I had a panic very early one morning when I woke up the other day. I woke up, my right eye opened up straight away but my left one was lagging a bit, I literally had to open it up with my finger but the reason I panicked was because I thought my eyelid had finally decided to shut itself because it couldn't stay up any longer due to the weak muscles... but it was just extreme tiredness and the late nights getting to me. But it really made me consider doing this brow lift suspension sooner rather than later! Either way it's still a 6 week wait and I will still know how the person I am in contact with about it and how his went as his op is end of June. So I will see what happens but this op will be done THIS YEAR!!! eeek!

4 nurses, a trainer and a pump...

I didn't have much of a sleep last night but had to get up early for the PEG pump training..(yawn) which I had FOUR nurses turn up with the PEG pump trainer! As nurses need in the area need to know it works too just in case they ever have to use one as its changed its whole look and how it works, new cables etc.. Although the PEG pump food hasn't arrive yet so I still have to use my old one for now which is fine by me. The old PEG pump which I got in 2007 has a wire pole and is heavy to lift so you can't really carry it about if you need to.

The new PEG pump below

It is small and teeny and PUPRLE!!! :D It's also quite light weight too since its plastic but I'll see what it is like when the food is on it!!! It probably won't get carried about anyway! It tends to stay permanently in my room! since I get "fed" overnight. I did get a special kind of rucksack which you could put your feed pump in there and get "fed" as you walk about! But I doubt that will get used!!! After the PEG pump trainer showed me how to use it, we just got talking about usual hospital stuff such as why some hospitals don't communicate?? Honestly they are rubbish sometimes with communication such as letting us know when the feed is supposed to come or basic nurse things like a nurse can go to one area but she cant go to another part of the town?? Sometimes it's just ridiculous!

Anyway. after all that, in the afternoon I went for a nice hair cut since I got it cut 2 weeks ago and they made a right mess of it! But I'm happy with it now!

New purple pump...!

Next week, I will be getting a snazzy new purple pump for my PEG! I've been checking it out online and it looks really cool! It looks smaller and I will be have better feed packs as at the moment we get BOTTLES of feed and on the new pump, they have these tinfoil bags now that u can just throw in the bin. Next monday, me and my mum will be trained how to use the pump as we did with the current one I have now. I'm sure it will be simple enough to do. When i looked online, they show you videos of how you use it and the beeps it comes with if there's a problem. When I heard them, i kinda thought they sounded like the beeps I get on the maps on the CI! It was very strange!

So I get the new pump next monday, but the new feed packets come later, so I will have to keep using the current pump I have at the moment and I will eventually start using the new one!

It comes with its own little rucksack to take it places if need be and you can walk about with it which is better because with the wire on the pump i have now i cant really walk far unless I drag the pump around with me!

Bring on the Feed!

Cochlear Art...

Ever since I've been at the nerve centre doing my painting, I have always been looking for ideas and inspiration of what to paint and with some help from friends and the boyfriend for tips, I have created some Cochlear Art! Below are two different paintings I have done.

Brow suspension email...

As you know from the Newcastle blog, I was waiting for someone to be in contact with me about the brow suspension lift that has had the procedure done. Today I got that email, and he hasn't had the same way of procedure because he had some tendon taken from his leg to do it but he is having the sillicon one done on the other eye in June so I might wait til then when he has had it done and I can ask him how it went and see the difference in his eye. I have asked him some more questions so im waiting for yet another email from him! Then I will make my choice wether to go ahead and put myself on the waiting list or wait ttil he has had it done himself.

CI or not to CI, that is the question...

It is no secret that a Cochlear Implant is a whirlwind journey to go on. Some have said it's like learning to hear all over again. I am sometimes surprised by how people take to their CI.

For example, when I had my first CI done, there was a girl who had it done the day after me and whereas I took to the CI like a duck to water when I was switched on, the other girl struggled with it and didn't wear as much as I did. I found that surprising but everyones journey to hearing is different and I can understand that. I have met people who find it hard to get to get to grips with their new sounds because when they are switched on, sounds can be robotic/muffled/sound like you are underwater. It takes a lot of hard work and patience to get to grips and get used to the sounds if you are an adult who has been deaf for a certain time. I find that children often find it easier to get used to these new sounds and wearing it than adults. Sometimes, there can be a lot of pressure for them to be able to hear which is unfair because it such a big thing to go through and it cant be easy. My good friend Vivie has admitted to me she struggled with it at first and she felt pressure to perform with her hearing which i feel bad for her because I wish I could have been there for her when she was switched on and reassure her that she can wear it when ever she feels like it and that there's not real time span of when you start to get used to wearing it or hearing these sounds. The moral of the story? Everyone's journey is different. There will be people who take longer than others to get used to it. There is no real rush in learning to hear. Go at your own pace and don't feel you are letting people down because you aren't. Instead they will be proud you are at least TRYING. if you don't like the CI, thats ok too. It isn't for everyone. No one will hate you because you don't like it. If they do, thats THEIR problem!

the waiting game...

I'm still waiting on information about the brow suspension op. The doc I saw at Newcastle will try and find someone who is my age who has had it done so I can talk to them about it and see how its improved their life. Having drooopy eyes alters your vision a bit, seeing double or getting headaches because you are straining them. I also got most of my blood tests back and echo and they were all fine except one blood test but the doc said that was normal in mitochondrial patients

They are also gona send me some leaflets on it through the post. I do want the op but I need to find everything about it first! Im in no rush

Newcastle update 2010 part 2...

We then went over to the BRAND SPANKING NEW part of the hospital and by this time, I was totally exhausted from walking around the hospital and the combination of not sleeping very well meant I was so tired that I was getting achey and couldn't walk far so they decided to give me a wheel chair to go round the rests of the tests because Newcastle Victoria is really huge and lots of long corridors meant a lot of walking. I had a brief chat with the mitochondria doc about how I was getting on with things. I then got wheeled to have my echo on my heart which was a bit uncomfortable but all was fine! Then I was wheeled to get a blood test which was OUCH! coz it was in a while as they took about 15 vials of blood!!! THHHHHEN it was back to the mitochondria doc to see the dietitian as I have been losing weight despite being on the feed. So we have decided to try another feed and see if that works. Our dietitian in Huddersfield should really be keeping an eye on me but we haven't heard from her since last year! The team at newcastle are great because they understand about mitochondria and take it seriously and keep an eye on me. just a shame we have to travel 3 hrs for that! So for now the priority is my eyes and wether I have the op done. So had a lot to think about on the way back home. i didnt cry the entire time i was at hospital but i shed a tear in the car. it was a lot to take in from the whole day.

Newcastle update 2010 part 1...

Me and the parents set off to Newcastle a day early as we always have to be at the hospital early and it takes us 3 hrs getting to Newcastle. if we had a 10 am appointment like we did this time we would have had to set off about 6am! (and im not good with reeeeeeally early wake up calls!) so we always book into a hotel the night before so we can relax for a bit before the hospital.

We got there for our 10am eye check where we were waiting about 2 hrs (urgh) when we finally got in, I was prepared with my eye op questions written on a paper! The eye doc took a look at my eyes and told me that it wouldn't be worth doing an eyelid lift because my eyelid muscles aren't strong enough and if he did it my eyes would be open and wouldn't be able to close them! which wouldn't be good! Instead he suggested an "brow suspension" which involves putting a tiny bit of silicone in your brow which pulls your brow up a bit pulling up your eyelids and giving me more open eyes in the process. its a sort of cosmetic procedure but it's used a lot for mitochondrial patients concerning the Potsis situation.

This op has 95% success rate and 5% failure. Although, the problem is, they can only do one eye at a time otherwise I will be spending a few days blind with patches on my eyes! He told me the waiting list is 6 weeks if i wanted it done. I would have to stay over night in Newcastle because of the risks I've had in past with operations and he wants to keep an eye on me. (Why can't every hospital be like Newcastle Victoria hopsital?? they are ace there!) Normally, he would have sent me home the next day and check up on me but thats not an option as we live 3 hrs away. He told me I would have to have it done under a local rather than a general anesthetic due to my risks in the past with my mitochrondria and it would be faster too. Doc also told me i WILL have a black eye afterwards. eek He has let me know about it and says I could talk to someone who has had it done and see the after affects from it and that its totally up to me when I want to have it done. Which I was not quite looking forward to that coz i REALLY wish I didn't have to make that choice...

newcastle hospital update continues in part 2

Cochlear wire

2 weeks ago, I was my cochlear implant was experiencing a few problems as when I woke up, it wouldnt switch straight on unless i fiddled with the cochlear implant wire, i thought it was just my batteries playing up so i changed them and the cochlear implant switched on. The next morning,, it did it again despite new batteries, i fiddled again with the wire and it came on. But this day, after my bath, it wouldn't switch on so i decided to investigate!

I took my cochlear implant apart and found this....

a frayed wire!

no wonder it hadn't been switching straight on! Luckily i had a spare! :)

I got a new spare from the cochlear implant centre and send the frayed wire to them as instructed. Thank god for spars! :)

Don't worry...

I'm not gone... I've just been busy with my crafty things! The nerve centre has given me inspiration to paint and do lots more arty and crafty things! They also do exercise such as tai chi or games afternoons! I haven't been to tai chi or the games afternoons yet but im sure i will one day. They hope to get more people with neurological disorders to come to the nerve centre and to buy more art supplies and to pay for advertising because most people don't know they are there! it's a good place for neurological disorders to go to because they can get out of the house for a while and meet other people with same conditions. I've just been busy painting and all sorts..

The Newcastle visit to hospital is coming up soon so get that out the way! For now i'll nurse my sore throat that i caught off my dad! :P

Blackout...!

We had a power cut last night at 1 30am (dont ask why i was up late i should have been in bed!) I was in the bath room and everything just went black! Lucky I had my cochlear implant on at the time as it would have been a lot scarier without! I felt and followed brother's voice to his room where he gave me a torch!

Checked outside and all the street lights were out, only our street though.

It only lasted about 45 mins but im certainly glad i had my cochlear implant to rely on!

To my Mum...

Who has been through everything medical with me and been there through the HIGH and the lows of my cochlear and mitochondrial medical journey. She cheered me up when I was down and we laughed at the funny times. I'm very thankful she's there and I don't know what id do without her. So to show you how much you mean to me Mum I made this for you I hope you have a WONDERFUL Mothers Day! Love you lots! xxxxxxxx

Rare Disease Day...

One of my cochlear implanted friends, Vivie came across a blog that alerted her about rare disease day. which is 28th Feb. She told me about it since I have a rare disease too. Mitochondrial disease isn't necessarily rare but Multiple mitochondrial conditions are such as my condition Multiple Mitochondrial DNA deletions is rare and even rarer in my people my age. It switched off my hearing at the age of 8, I've never been able to move my eyeballs to look up, I have droopy eyelids and affects my swallowing resulting in using a button PEG. I may be able to eat some foods normally but I rely on the PEG to keep my weight up. It affects all my muscles by not giving them enough energy so I get tired more easily. Doctors aren't really sure how my Mitochondrial disease works therefore I go yearly tests such as blood tests and ECGs at Newcastle to monitor how it progresses as I get older.

Postponed...

Newcastle has been postponed til Easter now which i'm feeling pretty rubbish about because I really wanted to get these eyelid op answered by the doc. At least I won't have too long to wait since it's only 3 weeks til Easter! I'll just have to try not to worry about it

Still, i am being kept busy trying to get the hang of crochet! its proving tricky!

Nerve Centre Visit...

Yesterday, I went along to the Nerve Centre in town, they are a drop in centre for people with neurological disorders and their careers, and they do all kinds of activities such as arts and crafts or games. Me and my mum went along yesterday after finding out about them a few weeks ago.

I wasn't sure what to expect when I got there but they were all so nice and welcomed us and while they told my mum about the centre, I was getting stuck into the crocheting as they had someone who was showing us how to do it. I had been wanting to try crochet but never could get the hang of it! Before you know it, 2 hrs flew by and we went home. I am looking forward to going back!

I can go whenever there's any activities on and just join in! It had just been what I was looking for to get me out of the house! :)

l look forward to the next time i go! and see what else is going on! :D

Button PEG flaw...

I have found a flaw in the button PEG which I got back in November. Apart from that tiny flaw, the button PEG is brilliant!

I find that the extension tube that clicks into my PEG, when you turn it all the way round clockwise, there's nothing to stop it from going back anti-clockwise so if you are fiddling in bed, it finds its way back anti- clockwise and can come out. It would help if there was a stopper to keep it there while you sleep! It has come out once or twice and I've woke up in a pool of stinky, sticky feed liquid in my bed. Some nights, I can be fiddling with the PEG tube to make sure it's still in and it's still all the way round clockwise! I'm having a few sleepless nights when I'm on the feeds because of that. BUT apart from that the PEG is all great and I haven't had an infection so far!

Plus it's a little dinky think on my tummy and I forget i've got it sometimes! hehe

Whoosh...

I noticed tonight, a sound that has been part of everyday life. You know when you brush your hair on the cochlear implanted side, it whooshes? thats the only way I can describe it, even when running your hands through your hair, its just whoosh, maybe a bit of a crackle if the hair is dry. I've had that sound for over 15 yrs! *i have had implant for 16 but it took me time to get used to sounds give or take a year" Sounds like that have become familiar with me. Every day things such as the telephone or my family talking in the back ground. Mind you, i hate dads snoring! I'm lucky i can switch off and have a silent sleep and not be woken. Although, not being able to wake by sound has its bad points but the sounds of a CI outdo any of the disadvantages of being deaf!

Also, Newcastle is creeping up soon in March and get the eye situation out the way! Ask my Qs that i have written down all ready for it. If i go through with it, and I'll probably say yes this time round because my eyes are bothering me now look wise and vision wise. I just hope i wont have to wait long to have it done or i will be freaking myself out with worry as i always do before an op! But we shall see! (see what i did there! hehe)

(screams!)

My eyes are now getting on my nerves! I want to read ONE sentence and they wont let me coz of my double vision!!! grrr

(sobs)

It's come round fast...

I have got this years appointment to go to Newcastle in March for the usual tests I have every year and quite getting fed up of it now but I know it needs to be done to find out how the condition is progressing. I'm also going to try and be brave enough to ask the Qs I have wrote down in my little notepad to ask the eye doc about the eyelid lift op.

i know it may be some time before it gets to the time to do the actual op as I'm not sure about the waiting list. I know it needs to be done now because its affecting my eyes. My eyelids have drooped down so far that my eyelashes sorta cover my eyes and that makes my eyesight funny.

I'm just try not to worry til it actually comes round! THEN I can be scared! :P

Surgery and Society...

I have been watching 2 documentaries over the last two nights about society and surgery. There were people who got surgery just to fit in with society such as people getting bigger breasts or having a nose job etc

I agree with any surgery that is going to help the person whether it is medical or help give the person the confidence to walk out of their house.

What I don't agree with is people having surgery such as bigger breasts to make themselves more popular or famous or having surgery when there's absolutely nothing wrong with their bodies!

I had my cochlear implant because it helped me to hear, it has taken time to get to where i am hearing wise, i've had a muscle biopsy to help docs determine what my medial condition was and I may in the future have to have my eyelids done to stop them before they droop further or close up all together, but I am doing this for my own good health and to stop my double vision rather than to show off to people how good looking I am.

What ever happened to natural beauty?

Get that sunshine out of my face...

Get this scene

I'm all set to walk wrapped up warm in the freezing cold to the bus stop, with my mum for my volunteering at the school and then out peeks the sun but it's enough to blind me from seeing whatever is in front of me when my head is upright. so I grab my mum's arm to guide me along the pavement while I'm following it with my head down. If i look up, its too much light going in my eyes that it makes me have shut my eyes or put my head down so i'm looking at the floor.

Spring and summer can be hard with bright sun BUT I make sure I walk on a shady side, probably why I'm so white with no tan ha!

Sun can make me disorientated and make me veer to the sides as I follow the floor with my head down. Today i almost veered into the road, i didn't have anyone or anything to hold on to, to guide me down the hill. I have to use all my concentration just to walk down a hill but it was freezing cold and I was finding it a bit hard. I got home safe though!

Sunglasses can be hard for me to wear as they are lopsided when I put them on due to my cochlear implant surgeries and plus it can get a bit sore on my cochlear ear with the bone going in. I opt for a hat instead.

"sssssssssssss"...

Our TV broke down this weekend which we could receive no picture, just audio, which i could hear. We then brought our old TV back in from the shed. There was a very big difference in sound. The TV which broke was stereo sound and the old TV from the shed was mono sound.

The next day we bought a new flat screen with stereo but my brother didn't get a chance to set the TV up in audio etc as he had to rush off to work. So whenever people said their S's, it was a high pitched ssssssssssss at the end of when someone spoke. My parents could hear it too but it wasn't as high pitched to them as it was to me. Whenever it did it, it made my ears hurt! My boyfriend was here at the time and he tuned in the audio thankfully! What a weekend with lots of different TV changes and sounds of the TV! I have now got used to the new stereo sound again! I'm glad not to hear them "sssssssssss" sounds again!

My mum also got a new telephone too! grr so lots of beeping from the phone and her trying out the new ringtones! She's finally sorted the ringtone because it was SO loud!

These techy gadgets take some getting used to with their sounds! haha! :)

Operation go...?

I have been thinking a lot over the last few months (i do that a lot... i should stop overthinking!) about the eyelid operation. I have weighted up the pro's and cons with my family and I'm noticing my eyes a lot more because they are getting strained a lot these days, when I'm just reading or watching TV. I also have to close one eye to focus sometimes and balance out the double vision, it gets worse when I'm tired too. I have been going to bed earlier a lot more coz I just want to close my eyes and rest them.

am going up to Newcastle in March to see the eye doc as well as top doc in my condition Dr Turnbull. Another round of tests that I have each year, i can get a bit fed up of it at times but I know I'm doing a good thing, doing these tests as I am in a kind of medical survey thing which lets docs know how mitochondrial conditions progress. Since I have multiple DNA mitochondrial and it is rare in someone as young as me so they want to see how my deafness, my muscles, my eyes and feeding, basically everything and see how it is getting on each year. I think everything has stayed the same apart from my eyes.

So i think my next priority is my eyes and getting them sorted out before they get worse. It will be scary but I need to do it because its going to get done eventually. I'm sure it will help me in the long run. I have many Qs to ask the eye doc about this op!

I have also been re-pegged today! Thankfully it wasn't as bad as getting the tube one out and its even teeny! So thats me pegged for another 3 months! :)

My painting...

I finally finished my painting last night. Hope you like it.

Cold begone...

I'm finally over the worst bout of cold I've had for a long time! I still have a very sore little nose and cough but that's better than feeling bloody sick and feeling so crap and not having a temperature anymore! The cold was actually a good help to that!

Hopefully, the nurses can get here tomorrow for the PEG change due to the snow. Id rather have it done sooner than later, get it over and done with and not see the nurse for another 6 months i hope!

"snow" way...

The big freeze is not to my liking... my feet are tingling a lot, I don't really know if thats good or bad. I am supposed to start back at the school volunteering but I have been suffering from a horrendous cold so I have had to email in and tell them I am coming in next week instead. I am having to put extra feeds on to keep my energy up because I really don't feel like eating and my throaty cough is scaring the hell out of me and its taking all my energy just to clear my throat and cough. I haven't really had much sleep either which is not helping matters. On another note, I have been admiring the lovely view of our back garden after all the snow fall!

Expectations of a CI...

A few people have asked me what to expect of the cochlear implant whether it what the sound is like or what ear they should do etc..

I do try my best not to get their hopes up because a cochlear implant sounds completely weird at first and takes a lot of practice and listening to get to the point where you start hearing "almost normal as possible" because a Cochlear implant is not totally perfect hearing. It is as good as you can get it as you are getting used to each programming map. BUT you DO get used to the map eventually if you keep wearing it and it gets better.

If you wear it every single day and listen to everything and anything, and after several mappings after every other month, you will begin to see the benefits.

it is also better to implant the worse ear, or in my case any ear since I am profoundly deaf.

Everything takes lots of practice with the first few stages of the switch on, and you will get to a point where you hear more clear and hear music, the phone. doorbell, voices.! the list is endless!

The operation is just the first hurdle of a cochlear implant.