merry christmas 2015

hello one and all 
its that time of year again and i started december by picking up a bug when i went to my nanas and i was sick of the way home! it took a lot out of me and ive been recovering in bed for the last week but now on xmas eve im feeling stronger im not complaining but it was hard and frustrating getting better as it gets worse before it gets better!  im looking forward to spending with family. i hope you all have a good christmas and good luck for 2016!

xmas 2015

well i was hoping to make xmas 2015 healthy (as possible could) but i was let down. i picked up a sickness bug the day before the annual meet up at my nanas and i was in pain the whole time and sick on the journey home! and that set off a mito attack. 
ive spent the last few days so frustrated at my body that it sent me to tears but all i can do is rest and walk about a bit to get stronger. 
its already been a week ive been like this but im trying to keep upbeat as theres nothing really anything i can do about it but thats how rare mito is i am so happy that i have at least people who are going through the same as me so they can relate and we can moan about it!
 Anyway i hope you all have a good christmas!

peg trouble...

\last thursday i had to go to A n E again because my mum couldnt get the saline in  or out of my balloon in my peg so came to the conclusion that my balloon had burst again and needed to be changed. for some time ive been putting on weight naturally without the feeds and we think my meds are the reason that i am keeping it on and steady. for some time because of the weight the nurse has said i may need the next size of PEG as the one i had was getting tight which is why we think its  bursting often. so A n E put my normal PEG in and gave me some antibiotics as i had a bit of infection which was nasty taking bleagh! the doctor who put it back in said it was getting too tight and the PEG nurse was coming the following thursday so he gave me the antibiotics and and the following thursday the PEG nurse put a bigger size of PEG in and a bit loose which is ok just need to be careful when i put my meds through the PEG tube. all in all a good week!

aware

 this week is mitochondiral disease awareness week! i have been doing my best to share and post facebook xtatuses to get awareness of it!

eek ear infection??

i got scared last week because i thought my recurring ear infection in my right ear had come back after being dry for so long i spoke to my mum about it and she called the GP who prescribed some ear drops and oral antibiotics even though i dont have a cochlear implant in that ear in that ear anymore its still one thing to worry about.
my mum then cleaned my ear out the other day and found a bit of cotton bud left in the ear from when i cleaned it and thats why it got so waxy and infected i was like phew its not that bad after all its settled down now its out haha im still having ear drops and the antibiotics til its all finished but all in all an eventful week!!

im doing pretty good these days although i have a sore PEG area but nothing sudacream will fix! im getting a little worried about my weight though although im a healthy 10st 7 its all going on my belly so think more gym days are needed! Joy my mental helper is pleased with how everything is going which im pleased about as i always worry about that but my meds and everything is going great! 

heatwave...

my part of uk is going through a heatwave at the mo which is uncommon to say the least i have taken to sleeping on top of my covers with a sheet because its too warm! i dont know if its the heat or its my mito playing havoc with my body?? either way i shall be glad when the weather cools down!

eek button burst!...

on sunday as usually do have my meds one by mouth and one through PEG line but today in horror my button came out with the line and i was in a bit of a panic coz it had never happened before! but mum sat me down and put the emergency catheter in and tried to get on the phone to the PEG nurse. of course it was a sunday so mum couldnt reach her so we were told to go to A+E  this was 9pm at night Also being a sunday my dad had a few drinks of wine so couldnt drive me so my brother had to drive me and mum to A+E where we got seen straight away. 
There was a nice male nurse on duty to pop the PEG back in and reassure mum that putting the catheter in straight away was the right thing to do so 15 mins later we left A+E and headed for home a bit sore but glad it could be sorted out quickly! Mum phone the nurse the following monday to get a new date for re- pegging. 
Thank god for cool headed mums eh??

unwanted weight...

since i went to newcastle i have been on nutrition drinks to get vitamins but they have a side effect of putting on weight we dont want to over 10 stone and i already at the top at 11 st mark so the dietitian has decided to put me on soluble tablets which are vitamins and shouldnt put weight on me hopefully they will be better! 

yearly trip to newcastle hospital

we went to the ct scanner first appointment to scan my brain then we got results later when we saw prof turnbull. we then went to have the EEG which checked my brain activity witch was normal, i found it very surreal having all these wires stuck to my head! its not something i had done before. We then went to see prof turnbull we discussed how i was getting on with my medication, diet and exercise. i told him i excicise once every weds with my carer. he was happy with my overall being. the reason i had the ct scan was cause i was having short term memory loss he told me my brain had shrunk little but he said this was normal in mito patients. hr also told me i had no tumours or growths so that was good newsi did a memory test with a nurse just to test my short term memory loss. all was good though. over all prof turnbull was happy to see me next year. 

i went to the gym today with my carer who comes every weds and was exhausted after 10 mins on the cycle machine but i managed to work on my arms too and then we (me and my carer) went to get some pic n mix haha my walking is getting terrible now i get so out of breath just walking for 5 mins so another thing to discuss with professor turnbull when we go to newcastle nest week

a historic result...

Today was a historic day for people and families who suffer from mitochondrial  dieease. The house of lords voted in favour of the 3 parent IVF! this is going to change many peoples lives for the better as they are allowed to give birth to a child WITHOUT the mitochondrial disease!

it is good news for me and fellow friends who have mitochondrial disease who would want to have a baby in future and we can give birth to a healthy child with no trace of mitochondiral disease

We thank the lily foundation and the work of professor doug turnbull for their tireless work to make sure it could be approved.

damage control...

today i found my mum emailing prof turnbull about  that he wanted me to have an MRIs and mum was telling that how im not allowed to have them haha he forgot i have a cochlear implant like most people do.

she also wrote worried about how my forgetfulness is doing and she wondered if it was an effect of my near death experience when i stopped breathing for a few minutes she thought i might have a tiny bit of brain damage but prof turbull will look into that in our next meet up in april.  he also wants me to have another EEG urgh i hated the last one i had last year those electric shocks to your hand but it was bearable 
im also hoping to get some answers from the blood tests he took last year 

im also having more trouble with my balance i seem to keep bumping into doors and cupboards il have to do some more exercises to help that .