Self-care Tips for PF Patients

Kim Fredrickson avatar

by Kim Fredrickson |

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Just breathe, passionate help for the PF journey

Being diagnosed with pulmonary fibrosis is not for the faint of heart. It is a rough road full of fears, losses, and unknowns. It’s difficult getting used to all that comes with this diagnosis, including lots of up and downs, tears, disbelief, and attempts to adjust.

Taking good care of myself makes a huge difference for me. It eases the losses and fears I experience when I’m able to treat myself with the kindness and compassion I would give a friend.

I decided to write about this important topic after being invited to be a guest on a webinar by monARC Bionetworks on Wednesday, Aug. 15 from 10-11 a.m. PST. I’m looking forward to sharing what I’ve learned about self-care since I was diagnosed with PF four years ago.

In this webinar I will share:

  • Practical ideas to help you care for yourself on this PF journey
  • Ways to talk to yourself with kindness and compassion about what you are going through
  • Skills for processing your many-layered emotions, and help with ongoing grief and fears.

This is a hard road that our loved ones and we haven’t been through before. I hope this webinar will be an encouragement for patients and caregivers, too. Please join me! You can register here.

Self-care tips

Here’s a sneak peek at some of what I’ll be sharing on the webinar:

Talk to yourself kindly

Most of us get down on ourselves for the struggles, difficulty adjusting, and discouragement we face. It is normal to wish we handled things better, but being hard on ourselves makes us feel even worse. Just yesterday, I was getting down on myself for not getting much done. I felt discouraged and like a failure.

I stopped myself and said: “You are upset and disappointed you didn’t get much done. That’s normal. This doesn’t mean you are a slacker or weren’t trying. It means you are dealing with a serious lung disease that zaps your energy and strength. Some days are better than others, and you are doing the best you can.”

It really helped to talk to myself kindly. I breathed a sigh of relief and was able to move on to something else rather than staying stuck being harsh with myself. Don’t know how to talk to yourself kindly? Don’t worry, I’ll share more ideas during the webinar.

Practice relaxation techniques

Many of us carry stress in our bodies from all we’re going through. Our bodies need our help to shift from a place of stress to calm. Breathing is a natural way to calm our nervous system. When distressed, pause and do some pursed lip or belly breathing to slow your system down. I’ll demonstrate how to do this during the webinar.

Join our forums and be part of the Pulmonary Fibrosis News Community!

Process your emotions

It’s normal to be sad, frustrated, angry, and overwhelmed by all the emotions that come with our diagnosis. Many patients and caregivers struggle with depression because of ongoing stress and grief. I feel these emotions off and on now, but they were especially strong the first year.

As a marriage and family therapist and pulmonary fibrosis patient, I have worked hard to stay in tune with my feelings and actually make friends with them. Believe it or not, God gave us emotions to help guide us, much like a GPS. When we can see our emotions as giving us valuable information to learn and grow from, it helps us take good care of ourselves.

We need to find ways to process our emotions in healthy ways, so we are not taken down by them. When emotionally upset, it helps to:

  • Notice your emotions (even the upsetting ones)
  • Name them (I’m feeling sad, angry, hopeless)
  • Express them in ways that are not harmful to yourself or others (journaling, telling God through prayer, talking to a safe person who will listen and empathize, etc.)
  • Be gentle with yourself about what you’re feeling.

The PF Health App. (Courtesy of monARC Bionetworks)

This process helps lower the intensity of our emotions and calms our systems down. When we do this, we will be more connected to ourselves and will move through these emotions more quickly and feel better. I’ll share more tips during the webinar.

I’m grateful to monARC Bionetworks for letting me be a guest on their upcoming webinar. They have a free mobile app tailored to the needs of people living with pulmonary fibrosis, called the PF Health app. It allows you to track your symptoms, share your data with healthcare providers, participate in research, and connect to curated resources. I use it, and it’s really helpful.

I’d love to hear from you!

What ways do you practice self-care? How have they helped? Can you join me on the webinar?

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.

Comments

Joyce Mullins avatar

Joyce Mullins

Is there nothing you,can do to control the horrendous cough associated with IPF?

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Kim Fredrickson avatar

Kim Fredrickson

Hi Joyce! Really good question. I will address this awful symptom. Thanks for asking.

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Anne Roberts avatar

Anne Roberts

The app is not available in the uk. Shame!

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Kim Fredrickson avatar

Kim Fredrickson

Hi Anne, so sorry it is not available to you!

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Laurie Swift avatar

Laurie Swift

I am ministering to a woman with breathing problems. For the most part she has a good attitude , is friendly and conversational. Occasionally she wakes up somewhat cranky with a loss of focus on her purpose but after a good breakfast and shower and dressing in bright clothing she tries to conquer her small world. The days are spent reading, going one place for about an hour or two and then she must nap. She loves to hear stories of others lives. She inquires about what they are accomplishing and what their ministries are at the moment. She finds great joy in singing songs of any kind. Her husband is alive and is in and out all day bringing her news of this person of that and the way they are representing Jesus as they go.

Mostly though she spends hour upon upon hour listening to God about what he thinks we should do in the world right now. How should we pray, how should we be responding to some overwhelming circumstances. He talks to her openly and she is relaxed ?.
Today she woke up singing the Cat Stevens song, ‘Morning has Broken.
Morning has broken like the first morning
Blackbird has spoken like the first bird
Praise for the singing
Praise for the morning
Praise for them springing fresh from the world
Sweet the rain's new fall, sunlit from heaven
Like the first dewfall on the first grass
Praise for the sweetness of the wet garden
Sprung in completeness where his feet pass
Mine is the sunlight
Mine is the morning
Born of the one light Eden saw play
Praise with elation, praise ev'ry morning
God's recreation of the new day
Morning has broken like the first morning
Blackbird has spoken like the first bird
Praise for the singing
Praise for the morning
Praise for them springing fresh from the worldMorning has broken like the first morning
Blackbird has spoken like the first bird
Praise for the singing
Praise for the morning
Praise for them springing fresh from the world
Sweet the rain's new fall, sunlit from heaven
Like the first dewfall on the first grass
Praise for the sweetness of the wet garden
Sprung in completeness where his feet pass
Mine is the sunlight
Mine is the morning
Born of the one light Eden saw play
Praise with elation, praise ev'ry morning
God's recreation of the new day
Morning has broken like the first morning
Blackbird has spoken like the first bird
Praise for the singing
Praise for the morning
Praise for them springing fresh from the world
Songwriters: Eleanor Farjeon / Yusuf Islam
Morning Has Broken lyrics © EMI Music Publishing, BMG Rights Management
Songwriters: Eleanor Farjeon / Yusuf Islam
Morning Has Broken lyrics © EMI Music Publishing, BMG Rights Management

This woman is me and although she isn’t the greatest person I’ve had a chance to
serve she is in need and I’m thankful I can help her.

Madhu International... tapestries

Reply
Kim Fredrickson avatar

Kim Fredrickson

Laurie,
How beautiful! Thanks so much for the ways you love and care for yourself. Love it! So appreciate you including these wonderful lyrics. Lovely - thanks so much for sharing.

Reply
Tawanna B. Smith avatar

Tawanna B. Smith

Hi! I don't have PF but I do practice intentional self-care as a caregiver and share with other women who are either caregiving or dealing with a medical diagnosis, strategies that I've used for my self-care.

I think it's important to hone in on the mental, emotional, physical and spiritual parts of our self-care. Whether it's something simple like going out for a quiet walk or meditating or journaling or tapping into your feelings or listening to soothing music or praying or traveling somewhere for a change in space to take a temporary break from your everyday environment to help with any level of healing, I believe it is ALL important and ALL useful.

Reply
Kim Fredrickson avatar

Kim Fredrickson

Hi Tawanna,
What a gift you are to fellow caregivers and those you serve. I love your very practical ways to recharge and care for yourself!

Reply
Kay Effzee avatar

Kay Effzee

I am still figuring it out.

Reply
M Michelle avatar

M Michelle

Hello God Bless you ,I love your page. My Auntie has lung Fibrosis. She is now with 24 hour care in the Same Hospice she worked as the nutricionit mánager 40 something years (since she was 20 she worked there).
This disease has been hide from me until april 2018 that she finally phone us and told us. She is single and has no kids,and all her siblings and relatives Live in other stated.
Last week she was admitted in the 24 hour care sección. I was told by one friend she has, by phone.
Am so confused cause my Aunt cant talk and has now 70 pounds( she was 120 all her life), and all her siblings keep thinking she will be better and Live some 6 months but I have been reading about this disease and am scared cause i think she is gonna die soon.
Please tell me if You think she may be in a final stage.
The denial thing is strong always in this family of Auntie ( my mom and their siblings)
I would be very grateful if You answer me in my email ( also here but specially in my email)
I feel hopeless but am determined to take a plane this week if neccesary.
My mom and I dint have comunnication with her doctor cause my aunt' s friend ia handling everything
God bless you
M Michelle

Reply
Kim Fredrickson avatar

Kim Fredrickson

Hello, Thanks for your comment. I'm so sorry about your Auntie. Yes, it sounds like she is in the final stage. I would get on a plane as soon as you can to see her. I know denial is normal, but it can stop you from saying goodbye. Your instincts are correct. So sorry for your grief and pain.

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Alice Bushe avatar

Alice Bushe

Painting helps me deal with anxiety and grief at so many recent losses in my life.

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