COPD Awareness Month: COPD Struggles

I have emphysema and chronic bronchitis from the combination of smoking and having Alpha-1. I usually try to stay upbeat and not let the struggles of living with Alpha-1 get me down but I think that hiding some of these struggles over the years kind of puts a bandaid on what is really going on and others just don’t see our everyday struggles.

We have gotten so good at hiding some things but the struggle is real. When you see me out and about, you may think that I look good and that I am getting out and about with ease.

Morning routine challenges

Some might say that my health must not be too bad if I go out and still do some of the things that others can do. Well, what you haven’t seen is the two and a half hours that it took me to get moving and get ready to get out there.

However, getting ready for the day can take its toll. Doing things like getting a bag together to take with everything that I need while I’m out and getting my lungs ready for the day can be very difficult.

When I first wake up I have what I call frozen lungs. I have to get them moving better by doing a couple of different breathing treatments, and breathing exercises along with my daily inhalers and meds. That process in itself takes 30 minutes or more.

If I am going to take a shower that day that is a chore in itself and can wipe me out for the day. Because of this, I normally try to take my showers at night and normally just wash up in the mornings.

To head out the door, I need my portable oxygen machine (POC) or multiple tanks. The tanks are nice because it provides me with the four liters that I need when I’m out and about but those tanks are heavy, run out fast, and are a pain in the bottom to trek around.

The alternative is to take my POC which can give me oxygen at a pulse rate up to five. Pulse means that each time I take a breathe it triggers some oxygen but it doesn’t give me what I truly need with a continuous flow I have learned to just slow way down and use that instead of trying to deal with the multiple bottles of tanks that it would take to supply me for the day.

Balancing energy and everyday tasks

Depending on how the weather is will usually tell me how my day is going to go. If it will be just a little struggle or if I am going to get extremely exhausted just getting out for a bit.

What I'm doing on the outing may mean that I might be down for a day or even two. It’s exhausting trying to have the energy to get out and about. The day doesn’t end on the outing though.

Like most of you, I still have my daily chores and meals I have to make. It can take a lot out of me, too. I am fortunate though to have my husband to help.

On days when I don’t feel like doing anything, he picks up the slack. I often compare myself getting ready for anything like a parent trying to get her toddler ready for an outing. I have to stop and do a million things and start the task all over again.

Parenting struggles are real also, just add in a heavy chest, getting short of breath, and having to take many breaks.

Managing the complexities of Alpha-1 care

Another thing that is exhausting is trying to keep up with doctors' appointments and tests. With me having Alpha-1, I don’t see just a lung specialist but also a liver one, with Alpha-1 being a liver disease that can cause lung and liver disease.

My Alpha-1 has also caused heart problems and circulation problems so I see specialists for that as well. I know that many of us are going through so much and it is a struggle for most of us but I wanted to give you a bit of insight into my daily struggles and what it takes to get through the day.

What are your daily struggles with COPD? Please feel free to share them here in the comments below or in our forum.