This is not his standard response. He is actually pretty easy going, and very compliant with his meds, nebs and physio. But occasionally he says it sucks. He has to work so hard to stay this well, and there is still a decline in his lung function every year. Why? Maybe the results of the CT will tell us. In the meantime, yes, CF is not really a walk in the park. But on the otherhand being regulars at the hospital is a very humbling experience - there are always people worse off. And whilst he spends sometime each day doing stuff just to stay as well as he is right now, it's nothing compared to what he had a few years ago even, with cumbersome old Pari junior nebs and percussion physio, and compare that to years before, where people with CF slept in mist tents, had to exclude fat from their diets as they didn't have the enzymes we do now, and had their IVs on constant drips in hospital, rather than pushing them through a port in the comfort of your own home.... Of course he doesn't know or understand all that yet. So yes, CF does suck, but it could suck a lot more!
I really do think we are the lucky ones.
