Contributed by Bob Rawlins, oxygen user and consultant to CAIRE Inc. ~
So, you are having a bad day or two …
Yeah, I hear you. I was having a few of those days this week. And I feel I am pretty positive.
It really is hard to describe to those not on oxygen or have endurance issues or maybe even other disabling challenges.
Everyone has them, sick or not, but I have to say this illness and journey has begun to teach me the “coping” ATTITUDE. These days are not easy and a challenge, no doubt.
But, it’s ok and expected really. Easier said than done. 🙂
It has gotten cold out here in the Midwest and handling the winter is a challenge in itself.
Not long ago, I was outside raking some leaves, breathing on higher levels of oxygen and it happened. I couldn’t catch my breath as quickly as I normally do.
It was un-nerving, a bit scary, and odd all at the same time.
Remember that first time it may have happened to you? I was in the hospital at the time, living off of a 15L re-breather bag. Nuts, I felt I was drowning without water.
Those days as a kid surfing in the ocean and getting rolled by a huge wave. Took me down and when I finally surfaced, I could barely catch my breath. Who thought then, that this would be different, but very similar?
My last three-month visit was pretty good, stable and managing. But we can’t forget that doesn’t mean invincible. I still know people who should be on oxygen but refuse at times to wear it. And at the worse time, out and about. Why?
I’ve been stable for about 15 months, not of the scarring, that damage has been done. My doctor said that I will probably be on oxygen for the rest of my life. You always think that after you have been stable for a while that the next news is that of improvement. Right?
Unfortunately, not in all if not many cases of people living with ILD, COPD, or IPF.
We hope for stability, not a word that has been in my vocabulary much before. Meaning, I always thought that if I continued to work at something, I should expect improvement.
My doctors explain that, being stable is the goal not necessarily improving on the things inside, I can’t. This is one self-improvement test you can’t win physically, but mentally? No doubt, if you make that choice.
Have you had that conversation? Have you thought about that?
So, after hearing that and letting it sink in after my last visit, it really hit me with the whole raking of the leaves incident.
The not so favorite cliché, “It is what it is.” Yeah, I guess, but realizing your limitations is the better lesson.
The weather has to come into play as well. It got cold quickly and just the day before I was busy doing something else never thinking that bit of tiredness combined with the elements can make a difference.
“But it does Bob,” I tell myself … but it never used to. Yep, you got it. It never used to but, today is a new day and you are on a journey that is more of a marathon then a sprint.
Frustrating? To say the least. Crazy, oxygen for life, limitations, and that little person in my ear telling me to “slow down.”
I remembered when I had that episode in the hospital I looked out the window and the sky was a beautiful blue. It was still, bright, gleaming with the rays from the sun. All good, I’m smiling. 🙂
The other day, I stopped from the raking, the sky was blue, beautiful, and could feel the warmth of the sun on my face. All good, started SMILING. 🙂
That happy place, find it, remember it, it can calm you and help you manage.
God is good, my friends!
Till next time!
Breathe-easy my friends.
– Coach Bob
Bob Rawlins, 61, of Medina, Ohio, is husband to Terese and father to their 13-year-old triplets, a soccer coach, a hospital volunteer, and marketing guru. He uses a FreeStyle Comfort portable oxygen concentrator.
If you have been prescribed oxygen therapy, learn more about CAIRE wearable, portable and stationary oxygen concentrators by visiting www.cairemedical.com or calling 1-877-704-0878 to talk to an oxygen advisor. We also have included a convenient contact form below if you want us to reach out to you. Thank you.
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