Sometimes it is hard to keep going when you have pulmonary fibrosis
The basics of living life and traveling are now such a challenge for me … like breathing, walking, being tired, having to bring oxygen and needing help.
I recently attended a Writer’s Conference in Monterey, California, put on by the Books and Such Literary Agency that represents me as an author. I gave an eight-minute talk about what a blessing it is to do Facebook Live Videos as a way to connect with others online, since I’m at home most of the time. I shared that I’ve been able to reach many people online that I wouldn’t have otherwise, and gave them some practical tips to help them get started.
Quite a few people came up to me after my talk, and told me they were encouraged by the way I keep going and adjusting, despite having to close my counseling practice of 30-years and be on oxygen 24/7.
I was so encouraged by their comments, and it got me thinking about this very topic. This will be a lesson I learn the rest of my life. I’m by no means an expert, but I thought I’d share some ways I’ve learned to keep going through all the losses and adjustments that come with having pulmonary fibrosis. You can watch the video here, and/or read the tips below. I got pretty emotional in the middle about some recent changes I’m going through with PF. I’m hoping it is an encouragement to you.
Tip #1: I tell myself the truth about what is going on, and am kind to myself as I struggle with each new challenge
It’s normal for us to be angry, sorrowful, confused, disillusioned, and to wonder if God knows what He is doing as we grieve and adjust to our new normal. I don’t get down on myself and beat myself up for struggling. It’s also very common for us to fear what we’ll go through in the future, and feel like giving up. That is normal. It doesn’t make you wrong, or weak, or a bad person, or that you’ve abandoned your faith. It makes you a human person who is being profoundly affected by having a terminal illness. Life can be hard, it’s OK that you’re struggling. I know I am.
Tip #2: I pour my feelings out to God
He understands and loves you and I so much, and He cares about what you are going through. I do this regularly and it helps so much. I ask Him for guidance and direction. I’m walking a path I’ve never walked before, and He knows how to get me through it even when I don’t. He brings me comfort, healing and help. He wants you and I to come to Him. Listen for His response, read scripture, and listen to music that brings you comfort.
Tip #3: I allow myself time and grace to grieve and heal
No one’s process is the same, so don’t compare yourself to someone else. Whatever you are going through involves grief over a loss, a change, an adjustment, a saying goodbye to a person, a job, your health, relationships, a dream, financial security no longer there, and generally realizing that the way you thought things would be … isn’t as they are. What I’m going through now is a continual grief process, and will be until I go home to be with the Lord, because it involves ongoing loss of my ability to do things, and becoming more dependent. In order for me to go to the writers’ retreat, I had to bring someone with me to help, and wheelchair me around, because the hotel was so big I couldn’t walk that far. The entire backseat was full of three types of oxygen equipment and a wheelchair.
It was exhausting, and several times I felt like it was too much trouble to do, and that I was too much trouble. It was hard to face I was dependent in a new way. In fact, I had a nightmare a few days later about being dependent and not able to help myself in a dangerous situation. Although that isn’t happening now, the fact I had this nightmare tells me my psyche is trying to work through a phase that is coming. I’m giving myself time to grieve and adjust.
Tip #4: I am learning to hold onto things loosely
That is easy to say, I know. I was able to do a lot and express the gifts God’s given me for 30 years through counseling, teaching, and public speaking. I’ve had to let that go. I’m grateful for being able to do all that for so long. I’ve been able to do everything for myself until three years ago when I got breast cancer, and then pulmonary fibrosis. It is really hard. I’m learning to hold onto things loosely, and this helps me adjust.
Tip #5: I try to focus on the good that I have NOW
In reality, you and I only have now. I allow myself to grieve over what I have lost in the past … but try to not set up camp there, because focusing on that will also steal what I have now. I am aware of and talk to God frequently about my fears for the future, but try to not set up camp there either. I trust that He will guide and direct me with whatever lies ahead, and I will deal with it as it happens.
I hope today has been helpful and encouraging to you. Please leave a comment below, and share ways that help you Keep Going on This PF Journey. I would LOVE to hear your tips for keeping going through these tough times.
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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