Be Kind to Yourself Throughout Hardships
All pulmonary fibrosis (PF) patients go through hardships. We watch our lungs and health decline and we suffer emotional pain as we process our foreshortened lives. Grief becomes a companion as we emotionally process all we endure. This disease takes a toll on us.
Talk to yourself with kindness
It is very important to develop a compassionate relationship with yourself as you go through these hardships. You will benefit from talking to yourself kindly about what you are going through. I often talk to myself like this:
“It is so hard to be diagnosed with PF. My world is so different from what it used to be. I’m glad to have oxygen to keep me as healthy as possible, but it’s so hard to cart around and be aware of at all times. I want to make the most of the time I have left, but sometimes it is hard to have a positive attitude as I struggle physically and grieve. My feelings are normal. I think I’ll be a good friend to myself.”
Stop doing things that drain you
One practical way to be kind to yourself during hardships is to stop or postpone activities that wear you down. I know this isn’t always possible. I am currently experiencing extra stress as I go through extensive testing for lung transplantation evaluation. I am so grateful for this opportunity, but it is exhausting to undergo lots of doctor appointments and uncomfortable tests.
Last week, I decided to take a two-month break from my personal blog, and other social media postings. I need time to rest, recuperate, and draw close to God. I recently wrote more about my decision here. Don’t worry, I’m not taking a break from writing this weekly column.
Do things that soothe and encourage you
I make it a point to do things that are enjoyable, that soothe me, and that build me back up, including:
- Reading lawyer mystery novels
- Watching TV
- Reading my Bible and listening to Christian music
- Spending time with family and friends
- Eating popsicles!
I’m sure you have your own list. I’d love to hear what’s on it!
The main point I want to get across is that having a chronic and terminal disease takes more from us than we realize. Being intentional about taking good care of myself helps me navigate the hardships of pulmonary fibrosis. Be kind to yourself. I hope this column will help you care for yourself, too.
I’d love to hear from you
How has PF taken a toll on you? Are you able to treat yourself with kindness? Which activities have you dropped that drain you? What do you do to build yourself back up?
Please leave a comment below and share with those who could benefit via email or on social media.
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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.
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Comments
Dixie Rose
I'm embarressed to go to church or activities I like because of the coughing, everyone looks at you like you have T B. I tell people whats going on but they don't seem to really know anything about it. Today I was at Sam's club and walking through the detergent aisle with all the smells, I went into a coughing fit and am still coughing and I'm home now. There's so much to do here and I have very little help from my husband, I'm just overwhelmed Dixie
Kim Fredrickson
Dear Dixie,
I'm so sorry you are having such a terrible time with your coughing. It is so hard when other's don't understand our coughing. I'm so sorry that you have so much to handle on your own. I so wish you had more support at home. I just said a prayer for you. Sending you a gentle hug.
Denny Watkins
Kim,
I really like reading your columns.
I'm a 73 year old male and will be 74 in 41 days.
I was beset with shortness of breath (dyspnea) on
April 13, 2016 while golfing. After seeing the
doctors during the period from April 2016 through
the present, I am on oxygen 24/7 and have been
diagnosed with the following conditions:
* COPD
* Emphysema
* Pulmonary Hypertension
* Interstitial Lung Disease
* Pulmonary Fibrosis
[How has PF taken a toll on you?]
After realizing that there is probably no chance for a
double-lung transplant, I'm to the point where I feel
there is no cure and no hope, even though I still search
for them. Every day seems the same. I go through the same
type of dyspnea episode almost every morning; almost every
night before bed; sometimes during the day. I dread doing
things that I know will bring about these dyspnea episodes.
[Are you able to treat yourself with kindness?]
Watching TV
Listening to music
Spending time with family
Eating popsicles (No joke, I do enjoy popsicles)
Internet with the forums and help groups like Inspire.
[Which activities have you dropped that drain you?]
I haven't been able to do a lot since I have been sick
with other illnesses that have affected my breathing.
[What do you do to build yourself back up?]
I love to see and talk with my two granddaughters.
Search through the discussions in the forums and
groups for encouraging news.
Keep up the good work and stay strong.
robert o'brien
Have you asked your MD about at least being tested? I'm 71 and finished testing in December and, although I qualified, I am too stable right now. I'm in Mass and tested at MGH which has no age limit. I know some transplant hospitals age you out at 70 but because anti-rejection and anti-infection drugs continue to improve, these hospitals are slowly coming around. Don't give up and speak to your MD. You've got nothing to lose. Good luck!
Kim Fredrickson
Dear Denny,
Thank you so much for your encouragement and sharing. I'm so sorry that you are dealing with so many illnesses at one time. That sounds overwhelming. I love your balanced way of facing reality and allowing yourself to have your feelings, while at the same time doing things that encourage you. Of course I also love that you are a fellow popsicle lover!!! You keep up the good work and stay strong too!
John Parks
Hi all,
I’ve been feeling kind of sorry for myself after being denied transplant evaluation at two centers of excellence in Philadelphia, PA.
The first eval took place where I have been treated since diagnosis in March 2014. That denial was based one: age 73, not ready for the xplant yet, and the type of adenocarcinoma I had which led to the IPF diagnosis. The second denial was at the second COE also located in Philly. Fortunately, the second location was much more encouraging and asked me to come back when I was closer to the 5th year anniversary of being diagnosed. I say I was feeling sorry for myself until two people who were close to my family died unexpectedly within a week of each other. One was my son’s age 40 and the second was 67, younger than me. The second person was a woman who hired me to work part time when I was going through a masters’ program. Both were exceptional human beings. Both funerals were well attended by friends and family. Long story short, I rather quickly woke up and told myself (and anyone else who would listen). Living with IPF, hassling with portable 02 and tripping on 02 tubes around the house and becoming SoB (ok) dealing with dyspnea was infinitely better than hanging out under the daisies. So, if you get down because you have IPF, stop and thank God or whatever deity you go to, that whatever you are dealing with is much better than not dealing with anything or anybody on this earth again!! Never will I get down any lower than I am today, as long as I can still breathe, even if it gets difficult at times. Blessings to all John
Kim Fredrickson
Hi John,
Thanks so much for your story. Very powerful change of perspective. Your comment was a big encourageemnt to me, so thank you so much!
Peter Davies
Hi Kim hope your getting on with things ! Am starting all the lovely tests you have been talking about , am so glad you were excepted onto the transplant list and wish you good luck with it all been reading your blogs for
a while now and have replied but have struggled as am not a tecky you take care hope ive pressed right buttons this time sll the best pete
Kim Fredrickson
Hi Peter,
You know what I'm talking about regarding the testing. I'm not on the list yet, but am being seriously considered. Best wishes to you on this journey too. You did great on posting this comment...you are a techy after all! Take Good Care, Kim
Maggie
I m Marsha. I was diagnosed with Sarcoïdosis while in colllege. I had no symptoms of a lung disease. I had to get an x-Ray prior to being admitted into grad school. That’s how they found it. I am now 63. Before age 60 I was symptom free. Last year, after 26 hospitalizations for pneumonia, my doctor called in troops of physicians who performed a week of testing. Then a first year medical student entered my room and announced my verdic. Since I had no clue what PF was, my student, “play-like doctor” proceeded to read from his iPad. He then said, “Looks like you may die in two or three years.” I ask the kid to leave and requested to see my REAL doctor. Needless to say, the kid doc was fired. It has been a year now. I ‘m hospitalized about every 5-7 weeks. The hardest problem for me isn’t the final reality of this disease, God has my final verdict covered. It is the terrible, TERRIBLE pain. — I just saw my third pain doctor. I have been on morphine ER 40 mg and Percocet for breakthrough pain. OxyContin 40mg with Percocet for break through pain. My newest pain Dr was referred by my pulmonologist. I saw him yesterday. He put me on HYSINGLA 60 mg. Has anyone of you heard of this med. I am concerned that it will depress my respitory system even more.
The only true thing I know is that God has this nasty disease covered. I am learning that God’s presence and strength is the greatest when I am the weakest. Trust me. I am weak, depressed and sad. But God is still on the thrown. Thanks for taking time to read this LONG documentary. I’ve felt your comfort. Maggie from Alabama
Kim Fredrickson
Hi Maggie,
I'm so sorry you've had such a terrible time, and are in such terrible pain. I too share your faith in God and He carries me through as well. I don't know what I would do without Him. So glad you shared your journey with us. Sending you my love and a gentle hug.
Carolyn Calderon
My son was recently diagnosed with pulmonary fibrosis at the age of 59. He is the most wonderful son a mom could hope for.
It started about four years ago with a lot of coughing.We had no idea of what it was. We have seen a highly regarded specialist recently who told us he had pulmonary Fibrosis, and ordered several tests.
I have gone with my son to several tests , but he has not been given a prognosis. he feels very well, and is working every day.To top it off, he broke his ankle a few weeks ago, yet he only took off a couple of days.I am so sad to know he may not be around in a few years. I would like to know what the average life expectancy is after a diagnosis.Or maybe I don't want to know.
Kim Fredrickson
Dear Carolyn,
I know you and your son must be in shock getting such a difficult diagnosis. I'm so glad he is feeling well, and working. Exercising and keeping active is very important. There are two medications that are available to slow the progression of the scarring. You and your son can talk to his pulmonologist about this as well as enrolling in pulmonary rehab to keep his lungs as healthy as possible.
I know it is very sad and scary for you and your son. Many of us are given a life expectancy of 3 - 5 years, but I have seen so many people live way longer than this. New drugs, exercise and being treated by a specialist in pulmonary fibrosis can really extend a person's life. I would also recommend that you get Dr. Noah Greenspan's book, Ultimate Pulmonary Wellness. It is excellent and will help you and your son so much. You can get it on amazon http://a.co/aeODAEW
Carolyn Calderon
I am so sad, I can't say more at this time.I hope to hear from people who can advise me how to cope , for the sake of my son.
Kim Fredrickson
Hi Carolyn,
Your feelings are so normal. I'm so glad that you are reaching out here. This isn't just happening to your son, it's happening to you too. I would encourage you to find a therapist to talk with. I am a therapist myself, and know how being able to talk with a caring therapist helps so much. You need a place to talk and grieve, and say things outloud you may not have a place to share otherwise.
As your doctor for a referral to a caring and experienced therapist who can help. You and your feelings matter greatly, and you will be better able to be a support to your son, as your take care of yourself. Blessings to you.
Carroll
I’m living with PF and on a high flow. Right now 16lpm. Making doing things more difficult.
In one of your recent articles you had a site for scooters.
I’m in the market for one as my love of the our gardens, but some how I’ve lost the article. Was wondering if you would still have it and share it with me.
I’ve been following you for a long time.
Right now I’m being protested for a transplant. I’m 73 and here in Canada the cut off age is 65-70 but have found a unit who was willing to at least test me.
Take care
Kim Fredrickson
Hi Carroll,
Good to hear from you. I don't have a scooter myself, but may get one in the future. I love the idea fo you still being able to go out in your garden. Here's a link to a online site that has lots of options for scooters at discounted prices. Hope it helps. http://www.discovermymobility.com/store/scooters/ So glad you are pursuing testing for a transplant. It's worth a try!