This one is primarily for friends, family, and the general public.
You know that we COPD patients can’t breathe. We say we’re tired all the time. We talk about having chest pain and pressure. We have what we call exacerbations where we’re weak and may not get out of bed.
But our symptoms are confusing.
One day we are fine to do something and then the next day we say we can’t. We make plans and then end up cancelling them. Then talk about being lonely. We don’t do everything we used to. We don’t keep up with stuff like we used to. We forget things sometimes. We require so much, well, work just to go out and do simple stuff: there might be a manual or power wheelchair to load; there might be an oxygen tank and tubing to deal with; and then all of it to unload again when you get back home. We have so many prescriptions and so many doctor’s visits to keep track of and/or take us to. Wow.
Is this all really necessary?
I mean, are COPD patients just being lazy? Are we exaggerating about how little we can do so we don’t have to do it? Can’t we just push through the shortness of breath and the tiredness? Wouldn’t we feel better just exercising more? What does this disease actually do to us?
Is it really so bad?
Here’s approximately how it feels.
To learn what normal breathing is like for us: First, get a straw. Now roll that straw up into a nautilus from end to end and then straighten back out. Put a clothespin on your nose so you can’t breathe through your nostrils, put the straw in your mouth and breathe only through that. Go about your normal day.
This is really what it can be like to breathe, especially when we’re short of breath or in an exacerbation. Kind of makes you tired, doesn’t it? It’s kind of the foremost thing in your mind, isn’t it, getting a good breath?
Breathing is the thing I think about all the time. No, that’s not true; cats and chocolate are the things I think about all the time. But breathing is high on the list.
Pretend like you’re back in college pulling an all-nighter before finals and stay up for 30 hours straight. When you get to the point that all you want to do is go lie down, you’re there. Now go about your day as normal…and don’t forget to breathe through your straw. You might not be able to. We get it. We understand. This is how we feel on a daily basis. And when we’re in an exacerbation, it’s twice as bad. We simply need rest more than most people.
CHEST WALL PAIN
We feel a lot of pressure and pain in our chests. Sometimes it’s from inflammation in the lungs, sometimes it’s the cartilage connecting our sternum and ribs. Sometimes it’s from other causes. Sometimes it’s a sudden flare of sharp pain that we call “rib cramps.”
To understand this, there are a couple of things you can do. You can ask your overweight uncle to stand on your chest for a while. You can put a large sewing needle in a flame until it’s red hot and then stab yourself in the ribs. You can force yourself in an iron corset that’s two sizes too small.
Now, with your straw to breathe through, after no sleep for 30 hours, and your new fashion accessory that constricts and immobilizes your whole chest, go about your day.
You know, the pain is a symptom of COPD that I wasn’t ready for. Of course, I wasn’t ready for COPD at all, but when I had a horrible bout of pneumonia, the pain in my chest was like a consuming fire.
With all the exhaustion and lack of oxygen you might be feeling like you can’t think straight. You might not remember whole conversations, might not do little things like finishing your sentence, or even forget data you’ve known forever like your date of birth or address. Welcome to brain fog. We get this pretty often. It’s kinda scary, too. But we live with it.
If you’ve read through this article and visualized my examples, thank you. Even though I’ve been kind of tongue in cheek, our disease does feel like this. I hope you have a little bit of better understanding and I hope I’ve helped.