I’m so much more than just the quirky little dude with bad lungs. I’m the original badass asthmatic. I made the words “fitness” and “lung disease” sound cool together. Im the first and only person with really severe asthma ever to finish the Boston marathon. Not once…but 3 times.
Im also one who doesn’t gets easily overwhelmed by my disease or by all the medical interventions that go along with it, but I have to admit these last couple of years have really sucked. Spending a lot of time in and around hospitals and clinics has a way of wearing even the strongest person down. On top of that, last month my Pulmonologist classfied my disease as end-stage and recommended I consider pulmonary palliative care. Let me tell you, nothing says “there’s nothing more we can do for you”, than being referred for palliative care. Now I know that palliative care is totally different than hospice care and might actually be beneficial, but it’s still involves more doctors, more appts and more time spent on thinking about my health problems. I would also be one of the first people with asthma to be in a program like this.
I think there comes a time when you start believing that because you’re sick so often, that you have to start the living that way full time, even on the good days. You get so frustrated with all the setbacks and disappointments, that you become satisfied with just taking it easy and trying not to rock the boat. Well, the hell with that…. I need to rock the boat.
So that brings me to today and the patting of my own back. Today I pushed myself into walking non-stop for a full hour . I covered less than 3 miles at a snails pace, but it might as well have been a full marathon because it’s farther than Ive walked in over a year. It was extremely hard to breath, especially on the hills, but not because Im out of shape, Ive still been getting in a mile and a half per day. My breathing sucked because my lung function is lower than its ever been, that’s just the way it is. As difficult as today’s walk was though, it felt good in my head and was just the right sized challenge I needed to pull myself out of this terrible rut Ive been in. Today’s mini-achievement reminded me once again that Im not my disease. I might not be able to move as fast as I used to, but I can still move, and more importantly… that I need to. Im going to be short of breath no matter what, so might as well do something that’s “non-medical” that Im good at, which is also healthy. Im still limping a little on my right side from the accident in late Dec, but not much pain anymore, unless I torgue it the wrong way.
You’ve probably heard this expressionbantered around in social media , but it’s so true. Those of us who live with a chronic disease , can get so caught up with all the sickness and medical crap going on in our lives, that we often forget who we really are. We are just regular people who unfortunately have health problems that we have to deal with. Our diseases, whatever they might be, can only take over if we let it.