My latest problem is getting me down. Until about 10 days ago I was reasonably comfortable in bed but now, every night I start coughing and it escalates for 2 hours after which I am inhaling snot and saliva with every gasp. My face and neck are also dripping in the same. The mucus in my chest can't be coughed up so I just keep coughing ineffectively. It's deeply unpleasant and exhausting but I don't think there is any solution; I already have the bed head raised.
During the day I am also more prone to coughing and I spend all day sitting by my bedroom patio door so I can wedge my feet against it to prevent me sliding down in my wheelchair when I cough. I spend much more time with my head down which enables easier swallowing but I can't use the eyegaze or watch TV. And the effort to lift my head each time is monumental! So I am thoroughly sick of everything.
About Me
- Steve Evans
- OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never. I thought it would be a good way of keeping anyone who was interested up to date with what's going on with us. Communication is getting harder and whilst I want to keep texting, emailing and chatting to everybody this seemed a good way of saying more things to more people more easily. Typing is a slow process (this has taken 20 minutes so far) so a once to many approach seemed good. I hope to keep it up to date with various stuff including whinges about things MND related as despite trying to "keep positive" it does affect (in a generally f**ks it up kinda way)almost everything I do! For those of you who really want to, you can check out my "status" on my web link. Finally, PLEASE leave comments, even if brief as its the only way I know its being read!!
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2 comments:
Steve,
I am sorry you are having a tough time. ~ Judy
Hello Steve,Im Moira,a fellow victim of this terrible disease. WHEN this happens to me,as indeed,it will, Ive been advised by mnd nurse to ask for both a chest physiotherapist to attend,plus loan of a cough assist machine.Carer will be trained to use it,in due course. The problem is not all Care centres have either a chest physio or cough assist machine. But this is urgent for you. Best wishes
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