I am an alpha-1 antitrypsin deficiency (AATD) patient and I am lung-affected. Like most lung-affected AATD patients, my exercise routine is far from normal. It’s just a fact I’ve come to accept.
I’ve written about this before, but after listening to others who have AATD, I wanted to focus on some key areas of exercise routine. I have learned a lot about AATD and myself over the last 6 months.
It’s a struggle to keep my routine. Often, I will get into a mode of exercise that seems to really help me physically and emotionally. Then, one day, I can go 10 steps and can’t do any more without an asthma attack. That’s when it gets tricky. I have to figure out what triggered it, and if it is going to keep happening if I keep trying to exercise. I have to look at my oxygen levels to make sure they’re staying in range.
Sometimes it knocks me down to the point of my body just not being in the right “mode” for exercise. In other words, I got out of the habit and I have to build myself up to it slowly. I can’t just jump right into doing exercise for 15 minutes a day. But that’s just me. I have to start with 3 minutes, then daily work my way up to 10, and then sometimes several intervals of that throughout the day.
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I also can’t seem to do chest exercises without an issue. It’s not like how it used to be, I could do bench pressing without a problem. But since I developed a somewhat “heavy” chest, those exercises cause me problems for a few days after 1 session.
I can’t decide if it’s the inflammation or the damage in my lungs that are the problem. It’s developed since I had COVID.
I have written previously about how important it is to do exercise as an AATD patient. Now I believe that those need to be highly personalized, flexible plans. Having COVID changed a lot of things about how I do things now. It may get better with time, as some with AATD are able to change their lung function. But not everyone is able to do that.
I believe I caught this at a young enough age that I could probably build up my ability to do chest muscle exercises again. But not everyone is so lucky. Right now I am able to handle stairs better than before, which is probably because my job is less strenuous. That helped me stand for longer times, get up the stairs better, and the list goes on.
Getting a less taxing job may have been one of the best things I have done for myself in a while. My quality of life is much better and that’s a gift that is important for someone with a chronic disease.
I am going to talk to my pulmonologist about a personalized exercise plan that will (hopefully) regain some lung function. Not to mention all the other benefits of physical exertion.
My mental and emotional health could always be better, and I’m sure being active will help there. And although I like variety in my routine, having a framework to go on will help me make good and confident decisions.
I’m sure pulmonologists know better than I do on this. With respiratory disease, the tables get turned and you get a different ending than we think. Everything can change very quickly in all our lives, really. And that variety in our lives is the spice of it. It keeps us from getting bored and boring others with our carefully planned out lives.
Too much planning can make things too hard, but not enough can completely destroy someone’s life. One of my favorite quotes is “Aim at nothing and you will hit it with amazing precision.” I’m not sure who wrote it, but I admire their wisdom.
When I plan nothing, I feel run over. Rarely does this ever help me feel better unless I am locked up away from everyone for a small amount of time when I’m tired. It takes some time and thought but it’s always worth it. Being sedentary can lead to heart disease, faster lung function decline, and greater stress in many areas of life.