From Our Perspective

There’s a lot of self-help on the internet for COPD amongst other things.

Sometimes it’s sound, medical help.

Other times its advice shared by other COPD patients and caregivers.

And often, it’s attractive posters with glad tidings and guidance I personally don’t find reliable.

But, much of it (it seems to me) is well thought out, constructive and you’ll want to remember it as our days pass.

From the patients' perspective

The following was posted to a Facebook page I was told about, (Facebook.com/FibroColors) and so much of it is so true.

I have a chronic illness. My days are long and hard.

I don’t look sick but I am.

I am trying my best.

There are days I can do some things and other days where I can’t.

I want to work, socialize and participate in my life.

I am not lazy.

I am not looking for sympathy or pity.

But I need your support.

When I read something like that I feel as if I could have written it.

"But, you don't look sick!"

I cannot tell you how often I have heard “You don’t look sick.” That usually takes place when I’m sitting, well-rested, without a cannula in my nose. I often say, “Wait a minute. Let me walk to the corner and back without my oxygen and we’ll see if you feel the same way.”

There indeed days when I can do work outside the house (a 4-5 LPS setting on the ol’ oxygen tank regulator– lol) if the air is free of humidity and it’s temperate. And there other days where the most I can do is grab a lawn chair and watch my wife and my son distribute the mulch around the trees and flowers.

I desperately want to socialize. I’m a fairly social guy. But, many days, the first and last person I speak with is my wife when she’s leaving for work or returning.

I can be lazy, but I desperately try not to. But sometimes that item I dropped a few paces back is going to be a pain to pick up and if you wouldn’t mind, it would be so helpful.

And, trust me, pity does not help me or anyone I’ve ever known. But understanding goes a long, long way.

What else we can do for ourselves

There are other matters and remedies that I would include if I’d written this list:

• Surround yourself with friends and family who lift you up. Sometimes people can be mean-spirited without meaning to be and without being conscious of it at all.
• Give yourself something to look forward to. Whether it be reading a good book or visiting family or taking a walk (if you have the ability).
• You probably know (as most of us do) that anger and depression are always out there waiting or may have already visited you. If so, please get professional help. Contact a therapist or attend a support group, you won’t regret it. A positive mind is so critical in moving forward!

A friend of mine who also has COPD suggested this one to me.

• Set a timer on your phone for 15 min and during that time express whatever emotion(s) you are feeling at that moment. Yell – scream – shout. Whatever lets off steam.
• Try to accomplish one thing each day you’ve set out to do. You can’t call it a ‘bad’ day if you do. Right?

I’m learning to accept my limitations. It’s important to have events to look forward to.

Always remember that you are not your COPD.

It does not define you.