Yeah, I made it to Boston , Ive walked the Rome and Portland marathons a couple times, and yeah Ive been written up in lots of walk magazines and medical journals, but I think a lot of people who hear about me or read my blog, assume that because Ive done all these things, that I lead an exciting life and that my asthma is well controlled and more of a nuisance than anything else. What they don’t see, and what I rarely write about unless I’m really sick, is the hell I go though on a daily basis when I’m not doing all those “fun” things.
Most days start out pretty good with my best breathing occurring during the morning hours. That effect however, rarely extends into the afternoon. Generally, as the day progresses, so does my breathlessness. If I eat even a small meal for lunch or dinner, the bloating that results, only adds to my breathing discomfort. By early evening I’m usually so short of breath , that I will have to take neb treatments every hour or two until bedtime. On most evenings I have to take Ativan or a strong opiate to quell my dyspnea enough to where I can nod off. When it’s time to go to bed I pre- medicate with a neb treatment , 2 Motrins and a half a vicodin.
I have pretty severe orthopnea and have to prop myself up with 3-4 pillows or sleep sitting up in chair. If I’m able to sleep at all, it’s usually for no more than 2 hours at a time and then I wake up gasping for air. Sometimes I’m so physically exhausted that I will lay there in a semi- awake state feeling myself suffocating…it’s an awful feeling. After about 5 minutes of that, I have to sit up to catch my breath and then get up and take a breathing treatment. By the time I finish with the breathing treatment, I’m unable to fall back asleep and will lay in bed wide awake until the sun rises. By 4 am my shoulder muscles are hurting so bad from shrugging them all night long, that I’m forced to get out of bed just to relieve the pain. Finally by 6am when the 9 pills and the 3 different inhalers I took finally kick in, I’ll usually start to feel pretty good again. After that, if all goes well, I have about a 8 hour window of decent breathing, in which to get my daily chores done, walk , and get my daily exercise and/or training in.
Keep in mind that the above scenario only plays out when I’m having a relatively GOOD breathing day. On the not-so -good breathing days, you can skip the exercise part all together…or anything physical for that matter. If my asthma gets out of hand, then I have to deal with the uncertainty of just how bad it will get and the added stress of possibly being admitted to the hospital…or worse. Then there’s burden that all this crap placees on the people who care about me.
So yeah, Ive done some pretty amazing things and I hope to continue doing more, but at the end of the day I’m just a ordinary guy with really messed up lungs dealing with this disease the best I can while trying to keep a smile on my face.