Gloomy days...

The nights are drawing in now an getting dark early, its sooo gloomy, it makes me feel down! But I am much looking forward to seeing and hearing the fireworks and christmas is soon too.

I have been keeping myself busy doing tapestry and wasgijs (look it up if you arent aware of them)

I have made a group on Facebook for mitochondrial people to join but so far no one has joined...

i feel a bit lonley regarding the ocndition because I dont have anyone to talk about it with apart from the docs who dont have it but research it Id like to see how other people cope with it etc maybe I really am a rare gem.

I get a lot of cochlear implantees on the blog but no mitochondrials even if it was just one person, I would be happy because I'm not alone. There's not a lot of people out there with the same condition I have but if there is, I haven't found them yet! I'll keep trying anyway!

knitted character...

Halloween is now over, I look forward to Bonfire Night and hearing all those bangs, whistles and booms of the fireworks!

The nurse is coming over tomorrow to change the water in the balloon of my PEG. This is the balloon that keeps it in my tummy! I get this changed once a week, it can be 2 weeks but the nurses in our town say 1 week because the water in the balloon can evaporate.I

I'm still working on wasgij's and tapestries alike as well as drooling over Harry Hill's TV burp's knitted character! hehe hes well cute! :)

Update on the new PEG...

I have come alone well with the new PEG (picture in the last blog) although I still haven't got acustomed to using the tube that you connect to the PEG to flush water through yet. It's not so easy when you can't bend your neck down enough to see your tummy! So Mum has been helping with that til I get used to it!

It is rather strange not having the tube though, I still act as though I have it like I expect it to be there and stuff it in my trousers or up my top so its out the way of whatever I'm doing and its not there anymore. Almost like a ghost tube! hehe

But I am still rather pleased with the smaller, more discreet PEG despite the horrendous ordeal I had to go through to pull the last one out!

Hopefully, this one will be better than the last one! :)

The difference in PEGs...

The difference in peg change!

The one I had from May 2007

to the one I had changed in October 2009

It was worth it hence the pain. Its a different peg though so Im still getting used to it!

The newcastle PEG part two...

After my parents had something to eat, we went on to the next section of the day which was going to the ward where they were going to do my PEG change. Yet more endless corridors of the hospital! We got to the ward where we sat in the waiting room for an hour after we signed in at the reception. The nurse that we saw before was going to do it for us so she took me and my mum to a side ward room and told me to lay on the bed. I wasn't sure what to expect... She told me it would cause some discomfort. I thought I was going to get an injection to numb my tummy area but noooo , she put numbing gel that did bugger all because when she started PULLING (yes literally pulling the damn thing out of my stomach) when I catch it on something at home, does hurt but that was nothing compared to the excruiating pain of when she was trying to YANK it out of my stomach! I tried to stop her pulling it but mum pulled me back and I just burst out crying because of the shock of the pain when it finally popped out of my stomach = and she put the new one in. Just like that, it was all over and I could relax for a bit on the bed! The nurse put a bandage underneath the new PEG because some blood has come out when she pulled it out. I didnt relax for long though because another doc came along who works with the mitochondral doctor Mr Turnbull so I had a few more tests to do to keep up to date. Like walking on a straight line and checking my eyes etc... The doc wanted to talk about doing my eyes again but I was in no mood to talk about doing another procedure!! No way! After all the tests were done, we were free to go home and I can chill out and recover and not have to think about anything else for a while! Although on the way home, I got thinking, in my lifetime with this condition, how many more proecedures will come up? Now it's my eyes but what else could crop up? :S It's gona be tough but i'll just have to get on with it when the time comes. For now, I will get used to my new PEG!

The Newcastle PEG part one...

It's been a looooooooong 2 days!

We traveled to Newcastle yesterday and stayed over night at a travel lodge hotel. Not that the bed was comfy, it was solid that I couldn't sleep! They did have the internet so I could chat to Gwyn and check facebook thought! I can't seem to go without checking Facebook every 10 mins! Even on my phone much to the dismay of my mum.

Because the bed at travel lodge was solid I got no sleep apart from waking up and twisting and turning and trying to get comfortable but it was no good. I was a complete zombie today which could be a good thing when you are walking endless around the long corridors of Newcastle Victoria Hospital! Has any one ever been there?? the place is a maze especially now there's new parts of the hospital has been built.

Part one of the day

We walked the endless corridors of the hospital to find the ward where we would be meeting a PEG doctor and the nurse we have been talking to over the phone. (mind you I liked her til she yanked out my PEG, more on that later...)

Most of the day was waiting and waiting, but when we got in, the PEG doc and nurse talked to me and m parents about the different kind of PEGs there were and the advantages/disadvantages of them etc, I got a bit upset talking about it because who wants a PEG at 24? I just didn't want it at all! But not having one wasn't an option because of my swallowing when I'm weak, it can be a lifesaver and keep my weight on. So my parents decided on the PEG for me, the PEG we chose is eaiser to manage at home because we are 3 hrs away from Newcastle, we needed the easiest to manage at home with the district and abbot nurse. We couldn't get a PEG where we have to go all the way up to newcastle if there's a problem as the hospital in Huddersfield don't do button PEGs, just the tube ones!

We then went for something to eat where I had to be nil by mouth which I had been most of the day anyway because the nurse told me to have a light breakfast which i did at 9am. By 1pm, I was starving and watching parents have their food and a nice cuppa tea was killing me!!

They were so meannnnnnnn!

continues in part 2...

Newcastle awaits...

I'm all set for going up to Newcastle and not really looking forward to it but it will be good to get it over and done with! I'm not overly sure what will happen when I get to the hospital but hopefully it wont be too bad and they wont fiddle about with my PEG too much (well, apart from the pulling the damn thing out and putting a new one in...)

but im hoping it wont hurt too much what with the numbing ness of course...

I will be back with a brand spanking new small PEG which won't bother me like the tube does! I will post the difference on here when its done. I'm pretty sure that it will be very much long awaited!

Gwyn has been around for the last few days, helping me forget about it, going to the cinema we saw UP which is was very funny. Id recommend anyone to go see it! :)

Not long now...

There's just a week on Tuesday to my PEG change procedure at Newcastle, I'm still not sure what to expect on the day. All i know is that on the morning I'm going to see the PEG doc and discuss some things such as which type of PEG I want, what's going to happen and the doc to have a look at my PEG and PEG site. In the afternoon, I will have the change done which takes about half an hour or something like that. Hopefully it will all go smoothly with no problems because I have to go home to Huddersfield after it's done. Any problems I may have, I would have to go all the back to Newcastle because they did the procedure and the Huddersfield and Bradford NHS don't work with the PEG that I intend to choose which is the press- stud type of PEG.

The PEG nurse will keep an eye on it though so its no worries! I hope!

As far as i know, I get the procedure done by a local which I'm not looking forward to having after the experience with my muscle biopsy. Hopefully I will cope better with this one! No shivering and crying!

insomnia...

I've been having some trouble sleeping, the last few nightsI've only managed to close my eyes but not actually sleep... I had a bout of insomnia when I was in hospital too and finally fell alsleep when I just could'nt keep my eyes open because I was that tired. Hopefully that will be the case this time but I dont really want another sleepless night. I'm not really worrying or thinking about the PEG procedure or anything else so I don't know whats causing my insomnia :0S

Hope fully I will get some sleep soon! I certainly need it! Im not focusing very well without it!

My opinion on a CI YouTube video...

My brother told me about a video on youtube and told me to watch it all so i did...
This is the video

While watching it, i felt a bit angry but then I watched it to the end and saw his point. But I disagree with his point. If anyone waited til 18 to get a cochlear implant, wouldn't it take longer to adjust to sounds if they have been deaf their whole life? If you had just gone deaf, it would be easier to adjust back to the sounds through a cochlear implant the less time you have been deaf whether you are under 18 or over 18.

I think that the earlier you have the implant after going deaf, you are most likely to have better speech skills after speech and language and adjust to the sounds better. The longer you stay deaf before getting a Cochlear implant it can be harder to get back to hearing the sounds and longer to get good speech.

I went to the cochlear implant meet in September, I met a child and he had his cochlear implant when he was a baby and I've seen videos of his positive progession of speech and hearing and hes getting better everyday! I know that some parents can find the decision very hard when its a child and they want the best for them. Either way, whether or not they have the cochlear implant, we are still deaf and part of the deaf community and we have the best of both deaf and hearing worlds. I dont hate my parents for giving me te cochlear implant, I LOVE them for it and they made the right choice for me to give me the cochlear implant when i was 9 years old. If they had left it til I was 18, I probably would have been too scared to go through with the operation and I dont think id have the good speech I have now. I had the help of speech therapists and teachers of the deaf when I was going through the cochlear implant after stage and learning to hear with it. I know my parents made the right choice and they don't feel guilty and neither do I!