I am a person with alpha-1 antitrypsin deficiency (AATD), and it affects my lungs. I can do about 10 minutes of exercise at a time and I have really bad allergies, especially this time of year. So for a long time, going on a river or hiking trip was too hard for me; I needed encouragement to do it.
What changed so that I could do it? I have been working on building up the amount of exercise I can do, not in length or increments, but in variation. I also exercise more often.
For example, I do three increments instead of one. And in terms of variation, I do different types of exercise each time—it’s not just bike riding or lifting weights. It’s that, plus walking, or swimming, or whatever else I can find to do.
Throwing in things like that has helped it not just be muscle memory but true cardiovascular exercise for me. As a result, I’m able to do 2 hours of kayaking, sometimes fighting the wind. Granted, I often lag behind (not on purpose), but as my brother puts it, “It’s not a race.”
Read more about experimental therapies for AATD
It’s not so much the amount of work I do, but the fact that I overcame my fear of being out there for 2 hours in a vulnerable state. I could have overworked myself. In fact, I probably did.
I did take some strong antihistamines before going on the trip and kept myself well-hydrated. My sister encouraged me to take some snacks, which I gladly did. One thing I would change in preparation probably would have been to have carb-loaded for energy.
After it was over and we were on our way home, I couldn’t breathe and I knew I needed my inhaler, which I had remembered, thank goodness (I never forget my inhaler). I had an asthma attack.
I have a large family with some very energetic people. Not all of us struggle with lung issues. Some of them can do in minutes what would take me an hour or more to do.
But for me, doing this was a major accomplishment. I posted to Facebook, I told my mom and dad, and I celebrated it by buying myself some new flip-flops. Anyone with a chronic debilitating disease knows that successfully kayaking for 2 hours without tipping over is no small thing!
I am really happy with myself, but at times while I was doing it, I really questioned myself, “Why am I doing this and what am I trying to prove?” Besides the exhilaration and enjoyment of it, I was simply trying to prove to myself that I could kayak for a couple of hours. And I did. Not everyone can, and I don’t mean to say everyone should be doing this. What may be easy-peasy for some takes months of training for others, and some can’t do it at all.
The next day, I was very sore (of course). And I also kept falling asleep every chance I got. So I know I overdid it somewhat. But it was worth it to live a bit more than usual for a few hours. Doing fun things is a necessary part of life, even scary things.
Read more about AATD complications
I have pictures, but no picture could accurately portray the beauty of the outdoors. It was so great, I forgot my phone.
The days before the “phone age,” where recreation now is most commonly situated in front of a screen, were peaceful. Not perfect, but peaceful. Before the phone age, we didn’t worry about why someone hadn’t answered their phone in a few minutes or responded to a message yet. We just lived.
With chronic illness, I find it’s helpful every once in a while to unplug and do something fun that is going to set your body on a crash course (not too bad of one, granted). It helps our mental health to realize we have that kind of freedom.
Kayaking is not for everyone, and I don’t think I will do it again any time soon. It was hard and took a good chunk of the day to complete. And I definitely know my lungs took a hit with it.
Really, it was just a blessing to know that even with AATD, there are options available where I can still have fun and enjoy life. We don’t necessarily need the pressure to do it, just a small encouraging word.