I don’t know about you, but for me adjusting sure is hard.
I just got back from a visit to University of California, San Francisco, for my six-month check-up at the Interstitial Lung Department. It’s one of three places in California where lung transplants (along with Stanford and UCLA) can be done.
For the second time this year my Pulmonary Function Test has shown my lungs are slowly worsening.
One year ago I was using supplemental oxygen 24/7 at 6 liters per minute (lpm), and now I am using 7.5 lpm. Although my condition is severe enough to be referred to the transplant team, I’m not eligible for two more years because I have cancer in my history. (You have to go five years cancer-free before they will talk with you about the possibility of a transplant.)
About a month ago I realized that I was even more tired and it wasn’t going away. I’ve been grieving off and on the past month about some additional limitations I now have, and even less I can do.
I think a part of me was hoping my progressive lung disease wouldn’t get worse.
It wasn’t a big part of me, but I was hoping my lungs were the same. Maybe my case would be the exception. Maybe I’d just stay at this level and not get worse.
So, I’m adjusting … slowly
~ Grieving … allowing myself to feel the reality of this recent change without it taking over my whole perspective.
~ Being a good friend to myself during this process. Taking it slow. Taking time to rest.
~ Asking for the extra help I need, and wishing I didn’t have to ask.
~ Getting more information from doctors, resources, etc.
~ Praying, reading scripture…seeking peace and rest in God.
~ Watching funny, uplifting TV shows.
~ Listening to soothing music.
~ Doing minimal gardening, which I love. I’m getting ready to plant lettuce, onions, kale, garlic, peas, radishes and spinach. I plant them in a couple of raised beds so I don’t have to bend over.
~ Continuing to write, blog, and do live videos on Facebook.
Adjusting is different depending on where you are in the process.
When I was diagnosed almost 2½ years ago, my first six months were intense, confusing, emotional and very depressing. Such a shock! How could this be? … What? What? You get what I mean. The worst day ever was hearing the diagnosis … and the prognosis. Then the process of telling family, friends and loved ones. No words.
The next six months, I was still actively grieving, and taking the steps to close my 30-year counseling practice, which was indescribably difficult.
For me, the last year and a half have been more about going through a cycle of slightly worsening, grief, adjustments and acceptance of my new normal. Then a period of stability, and then the cycle starting again.
This is my experience. I know yours may be very different. Because my pulmonary fibrosis was caused by chemotherapy and radiation for breast cancer, my disease has progressed faster than some.
In the middle of all this there was an amazing blessing — the release of my book, Give Yourself a Break: Turning Your Inner Critic into a Compassionate Friend. I’ve had plenty of opportunities to be a kind and compassionate friend to myself,f and it has made such a positive difference to me!
I try to take care of myself in ways that are meaningful.
~ Talking to myself kindly, “I am going through something hard. I have every reason to feel sad, angry, confused and even numb. It is normal to take time to adjust, and it’s normal to need extra comfort right now. I think I’ll be a good friend to myself, and draw close to God, my family and friends.”
~ Saying “no” to things that take too much energy right now.
~ Watching fun movies I enjoy. (I’m a sucker for the Hallmark movies during the holidays!)
~ Acknowledging my limitations, and at the same time comfort myself with all I can still do, which is a lot.
~ Hanging out with my hubby and doing some things we enjoy at home.
Adjusting is a process. It takes time. We aren’t meant to do this alone.
How About You?
How are you adjusting? It’s so important to be a good friend to yourself as you go through whatever you are going through. Treat yourself with kindness, take care of yourself, get the support you need and allow yourself the time you need to grieve and adjust.
I’d love to hear your comments. What has the adjustment process been like for you? What helps you accept the reality of what’s happening without giving up? I would really like to know.
Please share on social media or via e-mail with others who might benefit!
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.