Today was my day off and because its a day off that must mean that I have a hospital appointment in it at some point!!! It just would not be a day off if I was not seeing a GP or Nurse or Consultant. Today it was the respiratory nurse specialists. The usual lung function which is still rubbish. My pf was 310, my sats were 93% and my heart rate was 134 before I did lung function!!! My FVC was 2.1 and my FEV1 was 1.9. Not the best. I used to have a FVC of 4.5 and FEV1 of 4.2 so my lung function has gone down a lot!!!It has been stable at this level for a while. It used to go up an down and fluctuate a lot but now it has stayed fairly constant at this rubbish level!!!
The appointment itself wasn’t really very productive. I felt like I was just going over old ground again. IT was a different RNS I saw who I don’t know and I don’t think I achieved much. I am continuing on my steroid reduction until I hit maintenance.
The only good thing that did come out of it is that she is going to speak to my consultant and find out what the new plan is because clearly her plan is not doing anything and I am not achieving anything at all. In fact I am going backwards- this backwards step will be shared in a separate post as it has left me feeling in total turmoil with what feels like thousands of questions, worries, doubts but also relief a joy too.
I have found recently I keep thinking why me, why do I have to have the crap asthma, how much longer is this going to go on for, when is enough enough, what am I doing wrong. I have a huge amount of self doubt about my ability to control my asthma now. I think that after 11 years of absolutely no control the light at the end of the tune is little more than a flicker if that. I don’t know what more I can do. I feel what I am doing it right but somewhere it must be wrong to cause so many hospital admissions and so much time off work and inability to lead the life I want to lead.
I now need to await a phone call from the RNS once she has spoken to consultant to see what the plan is and where they want to get me to. So thats that!