Adjust, adjust, adjust…
Part of living with pulmonary fibrosis is adjusting to changes that happen as our disease worsens. There is so much to adjust to that it can be overwhelming at times.
I first started using supplemental oxygen two months after I received my diagnosis. I was still overwhelmed with grief, and so embarrassed to use it in public. For months, I went grocery shopping five miles from my home in order to avoid running into anyone I knew. I did this partly because I was my embarrassed to use oxygen, and because I knew I would burst into tears if anyone asked about it. I didn’t think I’d ever get used to using it, but I did.
Using oxygen 24/7
Over a period of six months, I needed to use oxygen 24/7. For a while, I only had to use it when moving about. I thought I could never adjust to wearing it all the time and never get a break from it, but I learned to adapt to this as well.
Using oxygen in the shower
For about one year, I allowed myself to not use oxygen in the shower. It was the most wonderful 15 minutes of freedom! I really resisted using it, until my levels fell into the 80s. Then I was grateful for it and got used to it.
Giving up my career
One year after I was diagnosed, I was forced to close my counseling practice of 30 years. I grieved horribly about this, as did my clients. I used oxygen for six months during sessions, until the portable oxygen concentrator couldn’t give me the amount I needed. I didn’t think my clients and I could adjust to the distracting puff of the portable oxygen concentrator, but we did. Saying goodbye was really hard, but we adjusted.
Getting used to doing much less physically
It is rough spending so much time in my recliner. I try to stay as active as possible, but that has become harder in the last six months as my oxygen needs have increased to eight liters per minute sitting, and 10 liters per minute walking. I used to be able to go to the rehab gym and do one other errand every day. Now I can only manage one activity away from home. It is still hard to get used to, but I’m slowly adjusting.
Finding a new way to contribute to the world
I used to love counseling and public speaking about relationships, self-compassion, and parenting. I’m not able to do that anymore, but I have a wonderful online ministry that I love and can do from home. I write this weekly column, as well as one about being compassionate with ourselves through the challenges of life. I released a book two years ago, and have another one coming out at the end of October. I’m grateful to still be able to make a positive impact on the world. I didn’t think I could adjust, but I’ve found a way.
My current challenge
I’ve found that I need to use an oxygen mask at night when I sleep, rather than a high-flow cannula. I don’t like it, but I’m getting used to it. It makes it hard to get to sleep, so I use the cannula when I go to bed and put the mask on when I get up to use the restroom. I’m usually so sleepy when I get back in bed that I can sleep the rest of the night with the mask on. I feel more rested when I get up, but it is one more thing to adjust to.
Adjusting to many other things as my PF worsens
For me, this is what the process looks like:
- I realize I have to adjust to something new.
- I grieve, protest, and think I’ll never get used to it… and then I do.
- It takes time to adjust, so I give myself the time I need.
- I allow myself to feel bad for a bit and to feel and to process my emotions. After all, I am a trained counselor. Ha!
- I talk to God about what I’m going through.
- I find strength in prayer, the Bible, and the gentle comfort He provides me.
- I talk with my supportive husband and friends.
- I know which ones will let me vent without trying to fix my problem, and it releases the difficult emotions and realities I’m feeling.
- Over time, I adjust to my new normal.
The current adjustment doesn’t seem as impossible as it initially was, and I seek to live the life I have to the fullest.
I hope this was of help to you. I’d love to hear the ways you’ve adapted to some of the changes you have faced. We are different and have different make-ups, so what works for one, might not work for someone else.
I’d love your response
What is it like to constantly have to adjust to new information from your doctor that is discouraging? How do you cope with having to adjust to new limitations? What helps you adjust and live life to the fullest?
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.