Hello, I read your blog with sadness and so know how isolating this illness is. My husband was told he was severe and that was that! He became very ill and I have never been so scared and felt so alone. I have found that you have to ask for help. Eventually after a particularly horrid episode two years ago my sister found that there was a specialist respiratory team in our area. I rang the Doctors and was told "yes there is" - keeping my cool I asked if my husband could be referred. Amazing! It was as easy as that after 8 years of no support! I wonder if there is the same service in your area?
They did not have a magic wand but did help with all his meds advise on his sats, what to do if he was having an exacerbation.
I can only say personally that you need to ask for help. The BLF helpline is fantastic so please contact them. There is also local breath easy groups - my husband was encouraged to join and has enjoyed visiting the meetings which are just once a month but again alleviate the isolation.
Try not to be frightened and isolated - there is support out there, its just finding it! Take good care of yourself.
With love and best wishes TAD xxx