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I don’t know about you, but I love to drive. I like taking the wheel and I don’t mind if someone else does, too. But as an alpha-1 antitrypsin deficiency (AATD) patient, I have a hard time with how much driving drains me.

Of course, not every AATD patient will agree with me. Not everyone experiences the same thing and it is not an official symptom of AATD. It’s just my experience I am sharing. It’s hard because I love being behind the wheel and being “in control” but when it ends up taking 2 hours out of the day, I feel drained. Often, I refuse to drive long distances on the weekend because of how busy I am during the week.

Why do I hate being in the car for a long time? It’s not that I feel I am wasting time, although I can feel like that. It’s like the air in the car almost feels suffocating if it’s too hot or too cold.

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To combat this, I take along at least 12 ounces of liquid on every hour-long car ride. I especially feel like that if it’s humid in my car. For some reason, humidity has become my kryptonite as I have grown older. And cold, dry air makes me feel congested. So I also prepare mentally to be focused if I will be in the car for over 30 minutes. The reason for this is it takes so much awareness and conscious effort the entire time to be ready for the unexpected. So it can be a little stressful.

I struggle with stress and its repercussions often. The world is really good at adding to our schedule and list of priorities. So if stress affects me that way I have to be guarded against that in traveling. Being focused on driving can be difficult, especially if someone else is in the car. I sometimes feel sorry for the people who are in the car with me because I struggle to stay focused on that.

Read about comorbidities in AATD

If I am not driving, I can get carsick easily. So if someone else is driving for a while, I have to take a Dramamine pill or a ginger ale drink with me. I think the whole of this places a great burden on someone who has a chronic illness like the one I have. But, it’s hard to know what causes the fatigue that comes from driving. There may be more to it. To me, it’s the equivalent of being worried all day. If you have ever worried all day, you know fatigue or maybe stomach issues well. It’s just a lot to think about for me.

So I often will plan days that I don’t drive much to make up for the issues I experience. Right now, on a regular basis, I have to drive a long way to work. It’s hard for someone without health issues but nearly impossible for me.

I honestly don’t think it’s a healthy thing to do to have such a draining experience so often unless there is a good reason for it. Also, it needs to be short-lived. It’s OK to have things like stress, but we need to have boundaries.

Boundaries are not rules, they are just about what you can handle in a healthy way. I am not you, so what I can handle well is different. As long as we know these things and live within them, we will be happier and healthier.

So my boundaries are as follows: first, I must have a day to rest in between a long trip and a work day. Second, I must rest in the middle of the drive, so I can “breathe the fresh air” as some people say. Thirdly, if I am not breathing well, I take time out to get it under control.

I also have to remember to bring water and my rescue inhaler everywhere I go. Life is much easier right now than it will be in the future. But now that I know to dust my car and keep it clean, I can feel better about being in the car so much.