After yet another wheezy and tiring day, I am really starting to wonder what is next. When am I going back in again this week? What is going to happen between now and next Wednesday when I can see my consultant in Birmingham and what can he do about everything. My symptoms have been especially irritating just lately and I think what is bugging me most is the fact that I thought we had controlled this or were at least some of the way towards it. Right now, I need anywhere between 5mg and 40mg of pred a day just so that I don't end up in hospital. My peak flow is seldom over 250 l/min and I can't actually remember the last time I didn't need my nebuliser for a whole day. I am in pain. I am exhausted and I am actually feeling at times like maybe I should just give up and let this disease kick me about. Then I get angry with myself for feeling that way.
We have tried so many different kinds of drugs, and they have all done at least SOMETHING, but the problem is, it just doesn't ever seem to work well enough, even when your repeat has 18 items, and you have more medical devices around you than your typical hospital ward. Since having my nebuliser, things have been a bit better, I am down from 2 hospital runs a week (probably staying at least overnight at least each time) to just the one a week, with a 50/50 chance of being let home, depending on who is on at the time, but I am finding it very hard to get through the day and I feel so weak and tired pretty much all of the time.
I have lost so much weight recently and my skin seems to be hanging off me, unable to tone as it is so stretched and damaged by the prednisolone and other drugs. I am always tired and sleep is hard to come by, especially when my chest is bad, so I do feel quite cornered by the whole thing, I must admit. My friends all worry about me as they are watching me get worse right in front of them, they have wondered when they see me, will it be the last time they ever will. Every attack is scary and you always wonder, "Is this it?", and you don't want to face it. I think that is the problem, we know my asthma is out of control, in fact it is wildly out of control. Even Dr Pike has admitted it. How do we bring it back?
3 years ago