My life has been hectic as usual but the main issue for me, has been re breathing.. I am having tremendous difficulties. It appears I should have been given more tests in Feb but this somehow didn't happen.
It has now reached what feels like a crisis for me. I'm struggling in the evening and terribly when going to bed as I can.t lay flat which causes difficulties with turning.
I end up gasping and very distressed. My night carers are extremely kind and soothe me as best they can.... but they cant breathe for me.
However I rang the appropriate consultant in Hx today and know that I am now being referred to Leeds as a matter of urgency.
There I expect to either be fitted with a mask, which forces air into you or (my preference) will take part in a new trial of a thing like a pace -maker which will stimulate the muscles around my lungs. Of course I need to know more about this trial, it has been used on spinal patients for a year and is now being used on MND patients who, as yet, haven't had the mask thing, but need help/support with breathing.
I really thought I was going to have a heart attack the other night my breathing was so so laboured for so so long... and... having a DNR in place, I got even more frightened as I'm not ready to go yet !!!
No, not for ages!! There are too many too good bits and there will be even more once I can breath with less effort !!!.
HUG ME, I'VE GOT MND