Not wrote much about whats been happening so here goes. First off top gear live was fab, didn't get to meet any of them which was a shame but got plenty picture's, i will upload a few soon.
After that came a choking fit, which resulted in an ambulance ride to whiston were i basically lay on a very uncomfy trolly in a room waiting for 2 and a half hour's, oh and they didn't have any pillows! I gave up and went home, waste of time.
I am now being fed through peg all day and just eat what i can inbetween, which takes the stress away from eating, i could kill for a big mac or burger king. Also have a sucktion machine which makes a big difference, great at getting toothpaste out.
New wheelchair is on order and should be ere within next four week. It will be load's better as its a lot narrower, won't be knocking any more chunks out the wall's, door's and door frame's.
The last week or so has been a struggle and seems show little sign of going, not being understood is getting me down and trying to get my word's out clearly is very hard and tirering, i am at a point were i don't want to talk, the eyegaze is getting more important by the day.
My body is full of aches and pain's, my hands and arm's annoy the life out of me with them constantly being sore and uncomfy. We got the community matron out the other day because my peg was killing me, must be inside that's sore, take pain killers, so that's what im doing. Then yesterday i got a visit off Doctor, first time ever. He come to ask about my prefered place of care (were i want die) and fill a form in saying not to resusitate me if my heart stopped, this was after he spoke to matron, i wonder if there thinking what i am
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.
Friday 9 November 2012
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1 comment:
Oh bless you Chris, how frightening for you to have a choking fit and the bloody hospitals never have pillows for their trolleys do they?
You must be feeling down,especially after the doctor's visit, but I can assure you what he spoke about is very common for MND patients and doesn't necessarily mean they are thinking what you are - it might sound daft but eentually it will reassure you that you have nominated where you would like to go if you need to have a trip to be treated.
Hospital/hospice beds are so stretched if you have expressed your wishes,at least then you have priority.
That gave my big bro great comfort when he needed treatment because as soon as he reached our local hospice that he had nominated he relaxed-he knew all the staff as he had got to know them before and they knew things like him needing to have a foot buzzer because he had no use in his hands(our other hospital didn't,he couldn't speak and was frightened he couldn't reach the buzzer so we refused to leave him).
Prior to that he had been in A&E and was panicking because they didn't know his wishes. This is all scary stuff but you have been so brave to sort it out. This way you can sort out the little things like how you like to lie in bed, and other things that may seem tiny but do matter.
Try and keep smiling - hope you get the peg site sorted too - antibiotic cream?
lots of love
Sam x
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