"Do Nothing and Live With It": Confronting New Normals of Living with Severe Asthma
After a recent appointment, my heart felt broken. I had lots to be happy about. I was mostly stable, even after a bout with a respiratory infection and a recent significant exacerbation.
What I was not expecting from this appointment was to hear that my current state of "not too bad" may be the best that this may get, or it was the opinion of my specialist that this might be the best that may be able to get me. My heart sank. Was this truly the best that I was going to get? My head began to swirl with questions and the looming reality. I think a lot of this eases the delivery of the comment. In my opinion, it lacked empathy.
As the conversation went, we discussed my improvement in FEV1, symptoms, and daily activities. Another big question raised was about identifying what I could live with.
What does "living with it" mean for me in my asthma journey?
In my severe asthma journey, I feel like I have done my fair share of living with it but I had not given much thought to what I thought I could live with. I had become used to living with symptoms, I thought that this is what I had been doing. It was also forcing me to confront all the feelings I had about what is reasonable control, or important to me. I determined that these elements are important to me:
- To be able to do all the things that I want to do.
- Be mostly symptom-free.
- Staying off of oral corticosteroids.
The landscape of oral corticosteroid usage is changing and I want to stay off them as much as possible. At my recent follow-up, my specialist did mention that they preferred a maintenance low dose vs multiple bursts. It was my understanding that the effects are supposed to be less damaging. Less damaging or not, I just want to stay off of them.
Assessing where I am and where I want to be with my asthma
If I look back at these goals then I am doing fairly well in achieving them. I have been able to do mostly "all the things," but there have been a couple more significant exacerbations. Although, I have been able to bounce back from these, which is a blessing, and in my opinion a testament to mostly well-controlled asthma.
In general, my symptoms have been mostly in check. I am dealing with a couple of things that are bothersome but not to the same degree they have been, and they are tolerable.
I believe “tolerable” to be the million-dollar word. If I am going to be asked to live with it, or take on suggestions I should live with it, because there may not be other treatments that can get me better. This has me examining my thresholds. I am not sure I have all the answers, I think I could live with some degree of breathlessness and cough but constant issues with mucus hypersecretion or excessive cough would be out of the question.
If I could not swim or bike, I feel this would be detrimental. If I could not perform some form of physical activity, I think I could not survive or define this within my parameters of "living with it."
There is also the question of where does "live with it" and a decline in symptom control meet?
Are you "living with it"?
What is your threshold for accepting your asthma and how do you wrap your mind around it? I would love to hear your ideas and strategies.
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