Letting go of something or someone is hard for all of us. We often face forks in the road where we realize we need to let go of people, expectations, plans, relationships, pain, and a whole lot more. This is especially true for pulmonary fibrosis (PF) patients and their loved ones.
As our disease progresses
Over time, this disease forces us to let go of our health, independence, mobility, career, ability to breathe without supplemental oxygen, and eventually our lives. That is a shocking list, I know. Our disease also causes our loved ones to let go of their plans, expectations, independence, and a future with us.
Each time our health worsens we have to let go of something else. Refusing to let go results in pain, disappointment, and bitterness as we try to deny the reality of our diagnosis. It also stops us from making adjustments that can make our lives easier. Reality can be hard to face.
Believe me, I know
Two weeks ago, I wrote about my recent exacerbation. My health has worsened to the point that leaving home is exhausting. The amount of oxygen my body can take in has decreased by 20 percent in the last six weeks, resulting in my need for increased supplemental oxygen. I am on a very high level —10 liters per minute (lpm) while sitting and 15 lpm while walking — so getting around is difficult, and did I mention exhausting?
I’ve had to face the progression of my disease. This has involved letting go of some activities and responsibilities. Most of my limited energy is used up on routine tasks like dressing, eating, paying bills, and light housework. Even walking around the house is a struggle and I’ve had to let go of some activities I love.
I retired two years ago from my career as a marriage and family therapist due to PF. Letting go was painful for me. I wanted to continue to make a difference in the lives of others, so I focused on my online writing career, which includes this column, my blog, and authoring three books about self-compassion, including the latest for PF patients and their loved ones. I’ve also enjoyed interacting with patients through social media.
This recent exacerbation has convinced me that I can no longer interact in all of the ways I love online. I’ve already deleted two of my social media accounts and put a hold on two others. I also have decided to stop updating my blog. I plan to continue writing this column for as long as I can, and stay active with my PF friends on Facebook, as I am active in several groups that provide support to patients and their families.
Grieving letting go
Letting go is hard to do: It involves facing reality, making appropriate decisions, and grieving new losses. This process is healthy but challenging to go through. I’m adjusting to my new normal, and it is rough. I recently had a very scary experience at the grocery store that made me realize it was time to start ordering my groceries online — one more thing to let go. It’s hard, but necessary, to adjust to reality as our disease progresses. I try to stay balanced as I grieve by enjoying what I can still do and noticing all the good that’s left in my life.
I’d love to hear from you!
How have you struggled with letting go as a patient or a caregiver? Share your tips on what has helped you? Please leave a comment below and share with those who could benefit via email or on social media.
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.
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