After my reps nurse appointment the other week I was really nervous about how my clinic appointment would go. I was not looking forward to it but sometimes the things you don’t look forward to and dread can come out ok. this was the case here.
I had lung function as always and I know the girls in lung function quite well now. We had a laugh when I was breathing in through the machine for the FeNo testing despite telling her I knew what I was doing!!! I was clearly half asleep as they told me!!! My FeNo was down from last time and my lung function was pretty much the same. But as the reap girls said I am on a whole heel of meds so the results should be good and infact should be better.
The appointment itself was ok too. It think when I was just about in tears in front my of my con she coldnt really say anything but she got why I have been so down and had not realised how much it is effecting me. Because things are pretty bad just now because my granny has just died the other granny is still in hospital, and my flat has flooded I have not reduced my steroids but did tell her I feel good on that dose. But I do agree with her I can’t be on that dose as it is still pretty high. I have to go and get an urgent CT Scan of y lungs because she thinks I have bronchiectasis from all the infection etc I seem to keep getting. I am not sure if this is a good thing or not. If i do have it then maybe treatment might be different but if I don’t then I just have to keep plodding along and try and get things under control. The option is methotrexate and a 2 week admission for it!!! Something I will not look forward to!!!
Mixed emotions but do feel constant understands what I am wanting now. in fact she said exactly what I want. TO have a fresh eye and start over again with new meds etc but to do that I have to come off meds and that is something that won’t be happening.
Part of me is very scared as this is the longest time my lung function has been so low with no signs of improvement. I notice it more in that I am very tired a lot of the time. For example I played golf- had a sleep in the afternoon and now and still shattered and it is only 7pm. On the plus side I had to pop into the chemist to pick up a prescription today and the pharmacist did comment on how well I was looking which is always nice to hear when you have not been well and are feeling a bit low on how you look etc. When a relative stranger comments does give you a boost!!!
Because my head was all over the place at my consultant appointment I have not taken in everything she said. I have no idea when I am next meant to be going back to see her. I have no idea when I am meant to be reducing my pred and no idea when I am going to see the reps nurses again. The only thing I do know is that I am going to see the physical health psychologist again because I am struggling again to adapt t life not being able to do exactly what I want and find my family really don’t understand it either and took take into consideration my ability. I think my talking to her will help.
One other thing I do remember is that she said that despite y best efforts I am not able to control my asthma well but I do understand it but sady control might never one due to the nature of my asthma!!!