Glad to be back in my fab bungalow, not that the stay in hosi was that bad but it was bloody boring! On a positive note my oxegen levels are as good as anyones so no need for the vent ;-) and they gave me a contraption to help cough. I think having my own carers staying made a big difference but my dad was run raggid picking carers up and dropping off.
While im on the subject of carers, i have a great bunch who we all get on with really well, the only bad part was losing my key worker who was great with me, the good thing is ive gained a friend. My new key worker and co key worker are doing great.
I feel i need explain a few things about talking, the effort involved is immence and takes a great deal energy so the more i have to repeat the harder it gets, then i get upset and struggle even more which then looks like im getting angry, im not! if i am angry its with myself and the awful feeling of not being understood. I am now at the point of not wanting to talk, its not worth the distress it causes.
Great news is i go Anfield tomorrow to watch the mighty reds with my dad and Danny ;-) hopefully get a win! also sent a letter with some wristbands to try get a picture of a player with one on, you never know.
I have decided to create this website about Fighting My Losing Battle against Motor Neurone Disease (MND) which is a progressive TERMINAL illness that affects around 2 in 100,000 people and will KILL most within 2-5 years. My intension with this site is to try and do my little bit to raise awareness and also log how my battle goes, ups and downs. I will post regular updates as much as i can.
1 comment:
You bugger.. youve just had me in tears ....i loved every minute whilst being your key worker we've had good and bad times but we've had some cracking laughs too :D ...im liking being your freind more coz i get to have the nice coffee lol ...sorry i couldnt stay longer today i see ya next week crabby arse xx
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