The title of this blog doesn’t really make sense. Losing a hated comfort blanket. a comfort blanket is meant to be something that protects you and you feel safe with it.
Recently I have had a lot of input fro my respiratory team, particularly the respiratory nurse specialists (RNS). I have noticed a massive change in my respiratory care of late. I am unsure if this is a natural progression as my asthma control was getting worse and worse with attacks becoming more frequent requiring hospital admissions or if this change in care has been brought about in the aftermath of world Asthma Day and the emphasis on the need for more asthma care and more input from medical professionals.
I do feel a lot safer in the knowledge that I have more people supporting me and my asthma and also that I can contact asthma specialists easily and quickly. This care is desperately needed not only for myself but for a lot of others.
Although just now I am having a really good patch and have not been in hospital in a while which for me is pretty good, I have achieved this by being on quite a bit of medication. But today with the RNS we discussed reducing my steroids. I have been on my dose for ages now probably over 3 months at this dose maybe longer but we decided to reduce them. So when I talk about losing my hated comfort blanket I am referring to my prednisilone. I have been the most stable I have been in a very long time. I still find asthma bothers me on a daily basis and don’t consider it under control but am desperate to get off prednisilone.
Prednisilone has become a comfort blanket that I want so desperately to get rid of but at the same time know how much it does for me so don’t want to lose it!!! Reducing is a natural progression as you can’t just stop taking it. Before when I have reduced it dwn to round about 15mg that is when I really struggle and start having more attacks. I am hoping this time though that because I am under the very close eye of the RNS they can keep a close eye on my lung function and my feNo and see when I am starting to struggle and need to stop reducing or increase again.
It will be a very slow process to get off prednisilone but it will be worth it as the side effects are really starting to effect me now.
I also have a chest CT tomorrow which I am interested to see the results because I have had a lot more pain than I usually get in the left side of my chest so will be interested to see if anything shows up.
Other than discussing my asthma the RNS was pleased that I have been managing my asthma much better. I have changed my outlook and I think it is because my mental health is a lot better and now use my inhaler and nebuliser more pre-emptively than as a rescue when I am in need of it. This way I have found that although I am taking reliever medication a lot more often I am actually using less of it as not requiring so much to relieve my symptoms. I have got into the habit of using a nebuliser before I play golf and this has helped and I have been able to enjoy golf more etc.
The outlook is much brighter just now. Days off are still spent resting up for work but I am not totally shattered all the time and feeling ill where I was before.