PEG nurse tomrw...

PEG nurse coming tomrw at home she comes every 3 months i think she will be pleasantly surprised at how im keeping my weight on without the help of the feeds - that reminds me must put water through my tube! i should do it every day! oops and my mum and me forgot my depression pill for 2 days running as we were so busy with things uh oh  i think thats the reason why ive got a bit weaker in my knees and my neck :S my neck is very floppy these last few days due to the fact its weak oh well another symptom to tell doc turnbull lol but i think it was coz of the meds really i felt a bit fuzzy the last 2 days so i  really should take better care of myself when night time comes meaning go to bed early! im not a teenager any more when i could handle staying up all night and still be ok the next day but i  know when i am defeated and have to rest eventually!

Its my carer Victoria's last day looking after me on Tuesday so will be sad but i dont want to stand in the way of her promotion she deserves it! and we will stay friends :)

Been busy setting up a mito support group and also mito support page on facebook look for us if you have any Questions about mitochondrial disease with help from co admins susan warnock claire younger. hopefully we can get awareness out there for mitochondria disease and educate people on it! 

Next trip to newcastle for me is in 2 weeks time hopefully all will be good news!

Mito Man Saves The Day!

neck muscles...

the last few days have been crappy for me as im so tired i cant even keep my head up i go to bed about 11/12pm and i wake up around 6 or 7 now ive come off the meds that hep me sleep longer.. newcastle soon though i can ask prof turnbull about it 

three parent IVF

i have seen on the news this week and on bbc The one show and it was talking about the pros and cons of the three parent IVF treatment for people who arent strong enough to carry a baby to term or pass on mitochondrial disease like me 

i might want a family one day but NOT if  it can pass my mito disease on to baby! Thats what the good thing about three parent IVF is about and could help loads of other people in my situation who want a healthy child like any normal person wants!

Above is a video that explains how three parent IVF works!

weak neck...

i have been overdoing it lately and i think its catching up with me :( i have been struggling to sleep due to my achey muscles and get comfortable and a few late nights! (i know! naughty me!!) i think ill take it easy the next few days! 
my neck and arms are the worst affected at mo i couldnt even manage to put my cochlear implant on with out getting out of breath and had to rest! im feeling a bit deflated but i will get there!  Always do!

joints...

The last few days have been hard but yesterday i particularity felt my pain! although i wouldnt say it was pain more like extreme weakness of my muscles making my muscles ache  sort of like a person does lots of exercise and has to rest but in my case it can take a while to get back to normal. The reason for all this pain i think is ive been overdoing it! i like to keep busy and thats my downfall sometimes!! lol i have been doing a lot of cross stitching which has taken it toll on my arm and wrist  and ive had 2 last busy weekends with family events whcih i was tired for. 
i dont really show how weak i am to family and friends when i see them but they understand coz they all know i have mitochondrial and some have seen me at my worst in hospital ( even if i didnt know it at the time!) 
i try not to let it get me down coz i know it will get better after some rest just my body telling me i need to slow down a bit and get some sleep and rest1!! 
i particularly had pain in my joints and my lower back this time which makes it hard to walk and do things normally such as brush my hair or get a cup of tea 
thankfully i have nothing left on my calender til April now i think! and i will chill out with my carer Victoria on Tuesday!
Next mito appointment - April yearly meet up with Prof Turnbull the dietitian the eye doc and hopefully getting the results of the blood tests they took from my parents and me in December! so that will be interesting learning! 

rare disease day

Today is rare disease day and its good to get awareness out for mitochondrial disease which is rare and can cause problems for my muscles and my energy levels it also affects the organs, every bit of your body!

please pass on this blog to get more awareness out there for mito sufferers

PEG or not to PEG... that is the Q

Now ive been off my feed for almost a few months now, my mind started wondering if I cope with out my PEG button? 
Niggling feelings of normality without a PEG in and the voice of reality AKA mum pips in to say what would I do if I had a mito crash and cant swallow food? or medicine for that matter?

The PEG nurse when she last changed the button told mum if it ever did come out accidently they would probably leave it out since im a healthy weight and have coped without feeds for a few months and my depression medicine that goes through my PEG is being reduced to the point I don't need it anymore. although I still do need depression meds by mouth (pills t hat wont go through PEG)

Its certainly something to talk about when we next go to Newcastle in April, if the nutrition doc
feels I could do without it.
I do have some doubts thanks to mum when it comes to mito crashes I don't want to lose the weight Ive spent the last 8 years putting it on and although its stable at 10 stone it is still up and down and I still don't eat enough to keep me going.  (I just eat when im hungry)

If I did have it out  and I happened to lose weight also when I had my first tube PEG put in, it almost killed me and my mum has always said she wouldn't want to go through that again!  and I wouldn't want to wish that on anyone.
Watch this space...

after xmas gym...

i went back to gym after 2 weeks missing it first time my dad was off so victoira has no reason to come then last week my legs were so weak we decided to have a girl day in i felt strong enough to go this week but i only managed about 10 mins rather than 15 mins but it was my first time back so ill go for that lol hopefully when i get back into a routine  il get back to normal!

Genetic testing...

We received a call yesterday from Newcastle hospital and they said one of the doctors on Professor turnbull's team saying that they wanted some blood from me and my parents  urgently because they want to get started on the genetic testing although there was no chance we could get up there before xmas it's 3 hours away and all the ! so they are coming to Huddersfield to take blood from me and parents and get them straight in the lab!  We will probably get the result next year when I have my annual appointment with  Prof Turnbull. They said that i was the best candidate for this type of research. I cant wait to get the results and see if theres anything in the genes because none of my family have mitochondrial disease!  They dont know if it is coming from my muscles or my bones or genes etc... they said it could be from both parents or just one and maybe a completely new mitochondrial condition either way Prof Turnbull  wants to know why am i like this.