As someone who has had an alpha-1 antitrypsin deficiency (AATD) diagnosis for over 10 years, I have learned a great deal about this disease. I have learned it’s very easy to have anxiety about it, especially when my symptoms get worse. Mental health is a struggle for many patients with AATD, but it can be mastered it with help and encouragement.
As a patient of any disease as unpredictable as AATD, mental health can be an obstacle. There are certain things that we lung patients need help with to enjoy ourselves, which can be gifts from friends, family, or healthcare providers.
For a long time I didn’t see it, but by being disciplined, I created an all-too-successful safety net. Most patients with AATD are told not to drink, smoke, or do anything that might lead to sickness. Much of this is good advice, but do you realize how much we are actually told, by friends, family, and others, to avoid?
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There is pollen in the air almost everywhere outside. There are germs on every door handle and there are so many subtle, irritating substances in the air—I really don’t even like thinking about it! Some of us wonder if we should be around campfires.
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Do you get the picture? With the exception of alcohol (for some of us, that’s a good exception), there is no way to completely avoid the things that irritate our compromised lungs. What has helped me has been the people who pushed me a little to be around a campfire every once in a while. I tried to sit where there wasn’t any smoke, which helped sometimes, but sometimes it didn’t. But was it worth it, to have some fun?
If we’re not careful, we can “safely” rob ourselves of the joy of living our life. There is nothing wrong with being safe (sometimes we aren’t safe enough, for sure). We just need to keep safety from ruining our mental health.
Recently, I went to a social function that was related to my birthday. While everyone there was sensitive to my health issues, someone was wearing perfume that was really bothering me. So I had to go outside, where allergens lurked. To make it more fun and to keep from getting too anxious, I challenged myself to count the minutes until my first sneeze. I have pretty bad allergies that sometimes start seconds after I step outside my apartment.
To my surprise, after sitting there for about 10 to 15 minutes, I never sneezed. I happened to be in a different state and it turns out that I don’t have bad allergies in the air there at the time. And all because of a little perfume. I had forgotten how much I loved being outside. And if only I was on a more potent allergy medicine.
Am I going to get a stronger medicine and do that? Maybe, but that’s not the point. For a moment, I felt alive. And if you’re familiar with how patients like me often feel, that’s pretty close to a miracle. I have mild emphysema with hyperinflation. I often feel like I’m either drowning or suffocating.
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Thankfully, there are breathing exercises that can help us keep our remaining lung function robust. Those purse-lipped breathing exercises are highly regarded in my support group. I love them because they encourage me to face my breathing issues head on.
Other things that help me are regularly doing as much physical exercise as my body will allow without stealing tomorrow’s energy. This not only builds confidence but also allows me to feel the results. When I exercise, I feel better. That’s a rewarding feeling. If I need to clean, I often do as much cleaning as I can for 10 minutes at a time. That’s as much as I can handle, and things still get cleaner.
It’s a great rule, but sometimes we need to break the rules. I recently wrote about a fabulous kayaking trip I took that took me well beyond my limits. I was exhausted for days, but the emotional high afterward was worth it.
Sometimes with guidance on what to avoid, we patients may need just a little bit of encouragement to get some fresh air. Even occasional exposure to a little perfume can sometimes be the catalyst. We all need a little help to see what we can do.
