The Balancing Act of Living with IPF

The Balancing Act of Living with IPF

younger than 30
I have read many articles on young adults living with a chronic illness since being diagnosed with idiopathic pulmonary fibrosis (IPF). Some I can relate to, while others don’t resonate with me at all. The articles I find most beneficial are ones that suggest tangible tools to help people cope with their disease, such as suggested questions to bring to your specialist, ways to deal with medication side effects, or how to navigate activities of daily living while on supplemental oxygen.

One of the most pragmatic pieces of advice I received recently came not through an article, but a conversation with a friend who is also living with a chronic illness. She and I spoke a lot about balance, and how so much of living with a life-threatening disease like IPF is about balance.

As my disease progresses, I have found that balance is an important element in finding ways to continue doing things that I enjoy. This includes balancing my energy levels: meaning that if I am busy one day, I have to balance the next day with rest. I learned this the hard way last week, on a really humid Friday filled with various errands. I had to spend most of Saturday sleeping on the couch. My plan for Saturday was to be productive, but I quickly realized that my body was not going to let me. This gap between planning and possibility has reduced me to tears on multiple occasions, because I just couldn’t do what I wanted to do, and had no choice but to rest and sleep.

I also have to balance the required medications that I take, and the side effects I will have as a result of taking additional medications for various symptoms. More specifically, I often find that I am reluctant to take medications that are on an “as needed” basis because I don’t want to feel unwell. I would rather tolerate the pain or nausea, which is the primary cause of why I am looking to take the medication in the first place.

I usually have a mental battle about “as needed” medication, because I worry about side effects that might result. However, I only consider taking such medication because I desperately want to feel better, and get relief from a primary or secondary symptom of my disease. This mental battle is certainly all focused on balance!

Another balancing act I often find myself doing in this journey with IPF is that of participating in social outings and protecting myself from unnecessary exposure to germs. For those with any type of interstitial lung disease, you know how important it is to keep from getting a cold. A virus or cold can quickly lead to pneumonia and an acute exacerbation or lung deterioration. For this reason, I balance those social outings I attend with the risk of germ exposure. If there will be a lot of people present, I often avoid going. I know this won’t be forever, but for now, if I want to attend large social gatherings or events with my friends and family and the risk of germ exposure is significant, then I either don’t go or take proper precautions such as wearing a surgical-type mask for protection.

Amid all the balancing acts I have learned to navigate with IPF, I am still grateful for the opportunity to do most of the things I enjoy on a daily basis.

As a PF/IPF patient, what are some other activities of daily living that you have had to learn to balance out?

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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.

7 comments

  1. Patricia Fox Attarian says:

    Nice post! I’m 77 have IPF, ARDS Survivor, Gerd, PTSD, Gastroparsis and on and on so many limitations and so much ISOLATION, I really feel strongly about wearing my mask. To many complications already and my life is full of people I love and know I’m worse now and may have months or whatever to live…Going into Hospice tomorrow where I know they will get my meals, Meds and assure me of getting that so badly needed EXTRA REST that just developed.

    • Nancy says:

      Going into hospice is frightening for me to do for my husband. It would be a form of giving up as it is for people who are not expected to live more than 6 months. Is that still the case?

  2. Lea says:

    Thank you for writing this. My dx is interstitial lung disease. In the last few months, I’ve had to learn balance. I want to be outside gardening and mowing grass every day. Nope. My body won’t allow that. Patience is needed. Wait. Rest. Get active again. My friends mean the world to me.

  3. Rubye Phillips says:

    I have just been dx with Pulmonary Fibrosis-possible & Restrictive lung diseasewith lung volume significantly decreased, but I don’t have any breathing problem, how can I help myself at home, I climb 16 stairs to get to my bedroom 3 or 4 times a day. Help me, I am 28yrs old.

    • Carolynn Fishleigh says:

      I have 13 stairs, so what I do is go up 3 then pause for a minute, then 3 more,pause etc. until I am at the top. I am considering installing a chairlift in the future when things get even harder.

    • Charlene Marshall says:

      Hi Rubye,

      Thank you for your comment, although I am very sorry to hear of your diagnosis. Living with PF and any type of lung disease is difficult enough to navigate, let alone having to do so as a young adult. I was also diagnosed when I was 28 and have been learning coping strategies along the way to help me deal with my diagnosis of IPF. If I can be of any help, or if you want to chat further, please don’t hesitate to email me directly at: charlene.marshall87@gmail.com.

      Best,
      Charlene.

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