Living Well With End-Stage COPD, At Home and Away
Last time we talked about what you can do when you have "end-stage" COPD - things having to do with staying physically healthy. All important stuff, for sure, but we should never underestimate the value of emotional health, as well. Here is some wisdom on how to live a full and happy life from those who know, people with "end-stage" COPD. Not every suggestion works for everybody, but if you try just one or two you might be surprised how much better you'll feel.
Get out there!
It might take some effort, but make plans to go out regularly; to dinner, to your grandchild's sports event or school program, or even for a ride in the car. Feeling self-conscious about wearing your oxygen? Would you expect someone who needs glasses to drive without them? Of course not! If your doctors say you need supplemental oxygen, use it. You'll breathe easier and live longer. If somebody has a problem with you wearing oxygen, it's their problem - not yours. You're just taking care of your health the best you can.
Don't sweat the small stuff
That may be a cliché, but being anxious can lead to worse shortness of breath. Do your best to avoid that. When something starts to bug you, ask yourself, "Does it really matter all that much? Is this a biggie, or can I just let it go?" The serenity prayer by Reinhold Niebuhr offers great advice: "God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
Record your history
Everybody has a story to tell, and we should all pass ours along, whatever our age - or our health status. Make plans with a friend or a grandchild to listen as you tell your story while they record it on audio, video, or digitally. Just sit down and start talking. You'll be so glad you did!
When I was writing my book I asked pulmonary patients this question: "If you could say one thing to somebody with chronic lung disease who is about to give up, what wouldthat be?" Answers ranged from, "Do not let it get the best of you," to "Go to the classes" and somebody even said, simply, "Keep breathing."
But one person, a lady with really severe lung disease said, "Do something to help someone." Wow. Even if you're short of breath you can help yourself... by helping others. Make a phone call or send a cheerful note to someone who's feeling down. Volunteer for your local hospital or public library by doing a sit-down job. Read to a child. Give somebody a ride to the grocery store or the doctor's office. There are many things you can do, and you'll feel better in the process.
Go with the flow
Probably one of the biggest concerns COPD patients have - and the most confusing - is the mystery of good days and bad days. Yes, it's important to pay attention to changes in your breathing, but don't spend too much energy trying to figure out why yesterday was so good and today is so crummy. Most of the time there is just no explanation. Just accept it and know that tomorrow will probably be better.
One way to make the most of bad breathing days is to have a box or basket stocked with quiet activities you don't always have time for and that won't tax your breathing - a book or magazine to read, word puzzles, jigsaw puzzles, a movie you've been meaning to watch, or a small sewing or repair project.
Go on vacation
Are you kidding? I have trouble just getting out of the house! Yes, traveling with any chronic disease takes planning, but if at all possible, take that trip! You'll be getting out, seeing something new, having fun, and making memories to keep.
For many people with end stage COPD, moving around is a big effort. In a pool you'll have the freedom to move around smoothly and easily. And yes, you can swim while wearing oxygen! If you have trouble walking a distance, rent a wheelchair or a scooter. The idea here is to enjoy a getaway - not to struggle with your breathing. Check these resources for more travel tips and ideas.
Travel Tips from the Cleveland Clinic http://my.clevelandclinic.org/disorders/Chronic_Obstructive_Pulmonary_Disease_copd/hic_Traveling_Tips_for_People_with_COPD.aspx
Travel tips from COPD International
Sea Puffers Cruises offers you the support you need to travel with oxygen.
Don't give up - and don't forget to live!
When you have severe or end stage COPD...whatever you call it...sure, there are things you can no longer do the way you once did, but there are many things you can do. Whatever you do, just don't forget to live!
I'm here to tell you that in our twice-a-week pulmonary rehab maintenance exercise classes of about 30 people, well over half have lung function of 30% or less. If that makes you wonder what classes are like, just come and see us sometime. But be careful, it can be contagious. No, not the lung disease...but the smiles, the laughter and the warm feelings of friendship and fun. It can be done. You can live long - and well - with end stage COPD.