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!