I have been very down for months.
Clear deterioration of health, no communication with health care professionals who in any case will never give an opinion, (you may have noticed that I occasionally bitch about it on here folks!), I had got myself into the frame of mind that I was going to fall off the perch very soon so nothing was worth bothering about. Very depressed under the disguise of acceptance.
Anyway, late last week I decided to fight back a bit if only to make someone take notice, so I texted the community respiratory nurse who had got me on to the rehab course half a year ago, and who had been supposed to refer me to a day centre at a beautiful hospice up on the edge of the Cotswolds about 9 miles away. Nothing had seemed to happen.
She called me Friday to say she had found the referral letter, typed sometime in November, but no date on it and no indication how it might have been sent, if it had. Strong suspicion that it had simply been filed in my folder in their office. She offered to come and see me yesterday (very quick response).
When I last saw her at rehab I am convinced that she told me to stop exercising because it took my oxy level down to about 64%. Yesterday she said I should start exercising again but gently to start with, and I wasn't interested - after all I was dying quickly wasn't I, and I hate exercise?
She gave me the first opinion about that from anyone in any medical position - she said I ought to see next Christmas at least! Next Christmas! That gives me a whole summer in the warm (you know, if that alien yellow thing in the sky comes visiting) to get out of the house, visit places with my wife, and go on holiday somewhere. I'm over the moon (my wife really deserves that holiday) - I'll start the damned exercises after nebulising this evening!
Now I wish I'd chased it up months ago - still now I feel optimistic. This will sound selfish, but now my mother in law died a few weeks ago we are much free-er to go out and about a bit. The nurse even offered to write to the consultant and Air Liquide to see if we can find an 0xy solution to stay out a bit longer.
And 15 minutes ago the hospice called and made an appointment in April to see if we get on with one another.
What a result!