Among other things, I have what is known as 'difficult asthma'. This means that my asthma is severe and persistent, despite maximal medical therapy. It is par for the course that things flare up and I run out of things that I can try at home. At this point, I either try to wait it out at home, in the hope that I can keep things stable enough and give my lungs time to get their act together, or I take myself off to my local hospital. The latter option usually wins, even if I try the waiting option for a bit first.
I take my medical care quite seriously, and am careful about taking my medications and avoiding allergens and things that trigger asthma attacks.
This is a good thing, as I'm sure it helps me to avoid unnecessary hospital admissions, and means that my doctors are happy to let me leave hospital that little bit earlier, as they know I'm capable of looking after myself.
I know that I'm a 'good patient', but there's always a nagging doubt that maybe I could be doing something differently. Something better.
Articles like this one (which was published in the American Journal of Respiratory and Critical Care Medicine) suggest that difficult asthma is often nothing more than a failure on the part of the patient to take their medications as prescribed.
While I agree that it's sensible to make sure that people are taking their medication before trying additional treatments with potentially serious side-effects, this view does make me feel inadequate, or even defensive. Most of the doctors that treat me are able to see that I am committed to my medical care, but there is the occasional one who treats me as though I know nothing about my treatments, and that I'm in hospital because I'm stupid. This view manifests itself in questions about my psychological wellbeing, whether I know about and take my medications, and questions about whether I smoke or inhale other inappropriate things. Peanuts and dust, for example. Or cocaine. Having patients admit to using hardcore illegal drugs makes this type of doctor very happy.
The sense of disappointment that I feel when it becomes clear that things are deteriorating despite my best efforts is hard to describe. I have such optimism when things go well, and feel so disheartened when they don't.
I think that today's lesson is that I have an illness that fluctuates. Part of the nature of difficult asthma is that it is hard to control, and I need to be forgiving of myself when, despite my best efforts, things deteriorate. However, the fact that it is an illness full of ups and downs does not give me an excuse not to try my hardest to control it. Yes, it's disheartening when I try hard and things go wrong, and I know that even when things go right it's as much due to luck as judgement, but every good day (even every good hour) is worth the effort, and I owe it to myself to give myself every opportunity to live life to the full.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J