February 10, 2019 at 6:39 pm #16631
This is a topic I’ve written about in the past, however, I can never stress enough the importance of self-care during tough times. And, as a patient living with a life-threatening lung condition like idiopathic pulmonary fibrosis (IPF); unfortunately we’re all bound to face tough times. Whether we are the patient, a caregiver, service provider/professional or even a friend of another patient with IPF, witnessing their journey can be tough.
I raise this topic again after the loss of a well-respected, courageous PF warrior who was also a strong advocate for our disease. Yesterday (Feb 9) would have been her third anniversary of her double-lung transplant and she was doing very well, up until December. She died on February 7th after complications of rejection, infection or ARDS. Once news of her passing reached me, I found myself struggling to accept this news, on top of knowing many others who are in the battle for their lives against this disease. It’s scary to hear what others are going through as a result of the exact same disease you have, and at the same time, it is so very comforting to connect with others who truly “get it”.
This where self-care is so important. While I’ve written about this in our forums before, my amazing co-columnist Kim Frederickson has written some great columns about the topic as well. You can read her columns entitled Practicing Self-Care Is Crucial During Medical Testing and Self-Care Tips for PF Patients on the main Pulmonary Fibrosis News page. Sometimes it seems cliche, but it really is true: you can’t help others without taking care of yourself first.
My heart is with many close friends and family of the PF warrior who passed from this cruel disease earlier this week, and my thoughts are on the west coast with a few other friends who are having a tough time at the moment. I tend to cope better with things when I can be present, and help out with problem-solving or tangible tasks that others might need. Since I can’t be there, I have a harder time knowing how to help from afar. This is where I need to keep myself busy and focus on self-care, because unfortunately when you can’t help, this is when the yucky feelings arise.
In times of turmoil within yourself or while supporting others with IPF, how do you practice self-care?
Do you have any self-care tips to share with the forum?
February 12, 2019 at 10:20 am #16678Rene HakkenbergParticipant
Hi Charlene, thank you so much for your encouraging words. Your generosity towards others while being struck with this horrible disease yourself is amazing and gratifying. You are just a wonderful human being. Stay tuned, a cure or at least a better progression stopper is on the way.
The only self care tip I can give to IPF patients is to keep on exercising to the maximum extent possible, always taking into account O2 saturation. Keep those lungs working. Rene
February 12, 2019 at 3:46 pm #16689
So great to hear from you, and thank you so much for all of your kind words! I know I owe you an email back, I am working through all of them slowly as I recover from my cold. Please send some warmth our way, if you have warm weather where you are – we’re under a thick sheet of ice here again in Canada!
I can’t wait for the day we see a cure for this disease!
I agree about the importance of exercise, something I am trying to do but have been slacking lately the with the cold. Keeping our lungs working is so important, while also monitoring our 02 saturations. Thanks for the reminder and I hope you’ve had a wonderful day 🙂
February 16, 2019 at 7:53 am #16825KarlParticipant
Hi Charlene, I always feel so badly for your situation. As one with early stage IPF and not even on oxygen, I can only attempt to imagine what it is like when exercise in any form is difficult, even terrifying.
I am not a good practitioner of what I preach but I am dedicated to improving: Diet and exercise are very effective methods of preventing all kinds of diseases and improving disease mitigation. Smoking is a common element involved with every form of cancer I know of, and IPF plus many other diseases. It is the first question asked by medical providers. Alcohol may well be #2. Past environment is certainly a question for IPF. For IPF patients, exercise is easier said than done at any stage of this disease.
My guess is there are several steps that can be taken depending on ones condition. We can all try doing these things for exercise at whatever level we are able to. And don’t expect instantaneous improvement:
#1 – Breathing exercise. Pursed lip breathing and deep breathing can be practiced sitting down, lying down, standing, walking, etc. I have to remind myself to do it.
If possible, without overdoing it, the following help:
#2 – Plain old walking, at least on a fairly level surface, at any pace, for whatever amount of time one can do it, helps get the endorphins going. If on oxygen, best done with the watchful eye of another person.
#3 – Pulmonary rehab. Again, if possible, I cannot recommend this enough. Exercising in a controlled environment with certified technicians assisting. I did this and have improved my breathing and my O2 levels significantly. Before rehab I lived a fairly sedentary life. Color me dumb.
#4 – For anyone who can, join a gym that has people knowledgeable in IPF and make it a routine to go there 1, 2, or 3 times per week. Allow 1 day between visits to enable muscles to recover. I started this 2 weeks ago and haven’t felt as good in a long time.
Diet: This is difficult for many with IPF. There are many qualified dietitians to get the right information. Each patient is different. There’s a lot of good and bad information online. Be careful.
I hope my experience can help others.
- This reply was modified 1 year, 5 months ago by Karl.
February 17, 2019 at 2:33 pm #16839
Thanks so much for your reply and the thoughtfulness that goes into your posts. As always, your writing is of interest to me and I appreciate the time you take in replying…
I completely agree and understand the importance of diet and healthy eating, especially when it comes to disease management and healthy living. It is hard for me (well, not as much physically difficult as scary) to exercise on my oxygen but I do push through. I could be better at this, and would actually like to get a few more pieces of exercise equipment that I would feel safer using in my home. My treadmill is good to walk slowly on, but sometimes I get real dizzy and that is a huge safety risk on a treadmill. I think a recumbent bike or something like that would be safer for me right now. I have done two sessions of pulmonary rehab now since my diagnosis, quite spaced out and I find them very helpful. Hopefully I can do another session soon…
One of the things I often work on is breathing exercises, I agree, these are very important for patients with IPF. A gym isn’t possible for me at the moment, but if I can find a few used pieces of equipment (like a bike, and maybe some small free weights) then I would have everything I’d use in the gym at home to use at my leisure. I’m working on this, slowly but surely.
Hope you continue to do well, and as always, thanks for writing!
February 17, 2019 at 9:24 am #16831Jean-Michel FourrierParticipant
Maybe a few easy things can help in these though times (but nothing magic):
Allow yourself time in the day to do nothing, without screens. I challenge you to take five minutes in the day when you do absolutely nothing!
Do an activity that frees the mind: walk, garden, draw, play music or listen, sing, imagine or daydream, hit balls (golf).
Promote humor. Surround yourself with friends with whom you have fun, with whom you laugh. Make jokes or tease your surroundings on a daily basis
Tell you what you would say to others to encourage them to take care of them.
February 17, 2019 at 2:37 pm #16840
Thank you for your post and the unique approach you took in challenging me when it comes to self-care tips, I really appreciate this! As you might guess, I am pretty bad at prioritizing self-care but Im getting better at it when it comes to certain things. I find it is easier to prioritize my needs when doing things I don’t enjoy, but a lot hard to take time for myself when I’m doing things I really like (ie. moderating the forums) 🙂
I will certainly keep your challenge in mind about taking 5 minutes away to do nothing, especially no screens. I just downloaded an App at the recommendation of another member on this site that tells both social and sleep stores. I think I will take a few minutes each day to lay down or sit quietly and listen to one full story each day. How does that sound as a challenge to myself?
You’re very right about humor as well! I was at a fundraiser yesterday, and I laughed so hard with the friends I was with, it was wonderful. Really helps lift your spirits no matter what you have going on. Thanks for that reminder!
I hope you’re having a nice weekend. Tomorrow is a holiday here, it is Family Day in Canada so I’m looking forward to a quiet day at home.
February 17, 2019 at 9:07 pm #16844Jean-Michel FourrierParticipant
Great ! your challenge sounds great !! Enjoy Family Day as a quiet and relaxing day …and if possible fun day …
February 18, 2019 at 7:07 pm #16856Laura BushParticipant
Hi, I’m new to all of this, and was only recently diagnosed with Advanced Pulmonary Fibrosis in October of 2018, while hospitalized for pneumonia. I also have a primary immune deficiency, rheumatoid arthritis, and sarcoidosis, as well as several gastrointestinal issues. The self-care topic is a much needed one for me. I welcome suggestions and advice. I have signed up for pulmonary rehabilitation at our local hospital, but haven’t been able to start due to chronic sinusitis and bronchitis. If I could only get healthy enough to start the program I’d be all set! Thanks for sharing your thoughts!
February 19, 2019 at 8:17 pm #16880
Hi @lowe (Laura),
Thanks so much for writing to us, and welcome again to the forums. I wish none of us had to be here as a result of this cruel disease, but you’re certainly in the right place if you want to be among others who are incredibly supportive, encouraging and those who just “get it”. Sorry to hear of your October 2018 diagnosis, I remember the months following my diagnosis and it was very tough. I hope you’re being gentle with yourself …
Regarding self-care, yes, this is such an important topic albeit easier said than done sometimes. Glad you’ve signed up for a pulmonary rehabilitation program, I thoroughly enjoyed mine and hope it helps you when you can start it. Gosh, I can’t imagine how tough it would be to breathe with those two infections on top of IPF. Are you currently on oxygen Laura?
Not only is physical self-care important but mental and emotional self-care is too. Be kind to yourself, and feel free to right us anytime. I look forward to getting to know you a bit more throughout the forums 🙂
February 20, 2019 at 8:42 am #16908Laura BushParticipant
Good morning! I’m trying to be upbeat when I am not really okay. I had the opportunity to spend a couple hours with my grandsons yesterday and had a wonderful time. They are ages 2 and 4, and of course full of energy! We had fun dancing and playing hide and seek, so of course today I feel like I’ve been hit by a truck. As far as self care is concerned, I imagine I’m supposed to take it easy today and rest. I had hoped to do my much over due laundry and some cleaning, but I don’t really feel up to doing anything. I don’t like feeling held back by my conditions. Is this where being “gentle with myself” is the answer? I couldn’t sleep last night because of pain and coughing, and even fell twice because my balance seems off. Fortunately I didn’t get seriously hurt, just a few bruises, and a lot of frustration. I am not on oxygen yet, but I imagine I will be at some point soon. I hope everyone has a good day, I think I will be hanging out on the couch.
February 21, 2019 at 7:25 pm #16944
Hello @lowe (Laura),
I am so sorry that I took so long to reply to you – I got a little bit behind on my emails, and your note was mixed in with many that I was trying to tend to in a timely manner. If needed in future, when you’re having a tough time, please feel free to “tag” me by typing (@ charlene-marshall, but no space between the “@” and my name)… this will alert me to your message faster as it sounds like you were needing some support when you wrote your message.
How are you feeling today? It sounds like you had a wonderful visit with your grandsons, making lots of memories but I can imagine their energy wore you out. Take the time you need to rest; laundry and housework will always be there. Your grandsons won’t always be little 🙂 I know that is an easier thing said than done, I am kind of “OCD” when it comes to housework and always want to be on top of it too. Part of this huge struggle with IPF is learning to listen to our bodies, and then treating our mind and thoughts with kindness when we might just need to rest… being gentle with yourself, is absolutely applicable in this situation. I know it is hard, trust me, its such a tough thing to do but we would encourage others to do what they needed for themselves, right? I hope you were able to do that for yourself yesterday, completely guilt-free. I wonder if you need to be evaluated for oxygen Laura? You might have fallen or been off balance due to low-oxygen. Do you track your 02 sats?
Take care and feel free to write anytime!
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