I’m Living With IPF and Need to Slow Down
I’ve always been guilty of putting too much pressure on myself.
While I was diagnosed with idiopathic pulmonary fibrosis (IPF) five years ago, I still haven’t learned how to slow down and avoid putting so much pressure on myself. This is despite the disease causing me extreme fatigue, breathlessness, a dry cough, and other symptoms. I’m still trying to keep up with my peers and keep commitments I’ve made.
Before I was diagnosed with IPF, I never prioritized sleep and could push through all-nighter study sessions when I was in college. I don’t try to stay up all night anymore, and haven’t for many years, but occasionally I still stay up too late to work on a project.
Under pressure
Some of the pressure I feel now comes from wanting to improve my work performance and meet my financial goals. My job is chaotic and occasionally requires long hours, but I love it. I want to establish my career, save to buy a house, and begin thinking about getting married and starting a family. But having IPF makes meeting those goals a challenge.
I’m also at a time in my life when spending time with my friends and maintaining my social connections are important to me. I want to have the time and energy to go out to dinner or coffee, or visit a friend’s new baby. I have a hectic social schedule and sometimes the pressure I put on myself “to be a good friend” is unbearable.
I am worried that I don’t have the energy to put in the work required for my job and keep social engagements. If I invest in my career, will it mean I won’t have time for my friends?
Additionally, I sometimes don’t feel mentally sharp, and I must remember that brain fog is a very real side effect of living with IPF, along with memory loss and mental fatigue. I put pressure on myself to perform quickly and to remember tasks and processes as if I weren’t under-oxygenated. I’ve even begun writing out processes at work and color-coding my calendar to remember certain things, but it still doesn’t feel like I’m doing enough.
I recently told a close friend that I needed to slow down, and she agreed. She reminded me that I have experienced acute exacerbations and that I have to contend with the side effects of anti-fibrotic medications, leaving me with poor lung function.
Only so many hours
I have given this a lot of thought over the past couple months and have concluded, as the saying goes, that “there are only so many hours in a day.” I do need to slow down. I want to start taking time after work to rest and relax, and to cook a healthy meal, because nutrition is important for managing chronic illness.
I do make time for exercise, but not time for my body to rest and repair from it, because I stay up late when I should be sleeping.
I can’t do this anymore. I am living with IPF, a life-threatening lung disease, and I need to slow down and find effective ways to reduce the pressure I put on myself. But I don’t know how to do that.
I wrote this column with the idea that putting it down here would help keep me accountable. I want to have a more relaxed and a less chaotic November.
In what ways have you slowed down since your diagnosis of IPF? Please share in the comments below.
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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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Marc Nasoff
Charlene-
Although we are different ages (I am an active 70 year old) we are going through the same issues--so I found your article to be very insightful for me. You are absolutely correct, we need to come to a conclusion that our lives will not be the same. Thanks for spelling this out for me and helping me come to the realization that I need to make certain adjustments (slowing down) in my lifestyle to cope with IPF.
Charlene Marshall
Hi Marc,
Thanks for reading my column and reaching out via the comments. I wish I wasn't right, and that my column didn't resonate with you as a fellow IPF patient - learning to slow down is so hard, but indeed important. May you have better luck at your attempt than I am. Take good care of yourself!
Charlene.
Ron Reid
Oh Charlene, please take it a bit easier. Sounds like you are doing what my grandmother would call "burning the candle at both ends" and the result of that is never good. For those of us who are at least semi-retired, it's at least easier to take rest when we need it. I can't imagine how difficult it must be for you.
One of the toughest lessons is learning how to say no, especially when your first instinct is to say yes to everything that sounds interesting or beneficial to those long-term goals you set out. Are there some of those life goals you can deliberately delay? Saying to yourself, for example, that you are not going to worry about buying a house until after you have new lungs?
Take good care of yourself.
Charlene Marshall
Hi Ron,
Thanks so much for reading my columns and reaching out via the comments - nice to hear from you! Indeed, I would agree that I'm doing what your Grandmother would describe, though with our project over the finish line, that will help me a bit. I am slowly learning to say "no", and am holding myself accountable to doing that by asking others to help me... a new years resolution!
Take care and chat soon,
Charlene.
VENETIA LAMB
I too have IPF being 8oyrs old, I was diagnosed May this year, told I a poor prognosis, I became angry, how dare this disease take over my life, but I am very positive, I work within my energy levels, an hour at a time, like yourself, I become lethargic, have coughing fits, cannot walk very far, cannot stand for more than hour, those are the negatives, I was a scientist studying researching the Human Body, which I still do today, I can hear,see, read, use a computer, concentrate on the positives, follow your dreams to the best of your abilities, just get on with it. Smile
Charlene Marshall
You're absolutely right Venetia; thank you so much for sharing your thoughts and experiences with us.
Charlene.
Marice Purser
Charlene, thank you so much for your time in writing in these columns. I am 76 and in my 9th year since diagnosis. Until recently I have always exercised, both in pool exercises and lots of walking in and out of the water. I am now at the stage that I can only walk, and not talk for about 50 metres without taking a break. Whilst it is rather frustrating, I have found a great new start to my day. Our home is in a street where many children walk or ride by to get to primary school. My husband and I eat our breakfast in a room at the front of our home. The best start to my day is when children are on their way to school and stop to wave to us. They stop their bikes, and scooters, and parents stop cars, just to wave to " The Nanna". They have given me lovely notes and cards saying thank you for brightening their scool days. In fact last week I actually met some of them and their parents for Halloween, it was a lovely day.
I guess what I am hoping is that by sharing these experiences it night be of benefit for yourself and all others, to find a way to brighten our days. By the way, I have also met many owners and dogs out walking with the children.
If we can all find something to brighten our days and share with our IPF Friends it be helpful for us to enjoy every moment we have. Best wishes to you all from here in our covid free Western Australia. Take care, love Marice.
Charlene Marshall
Hi Marcie,
Thank you so much for reading my columns and reaching out via the comments; I really appreciate your kind words. Wow - 9 years since diagnosis? That is so wonderful to hear! I love the newfound activity in the morning that brings you joy; those things are so important to us. Thank you for sharing!
Charlene.
Judy Krasovec
Well if you don't slow down your disease will do it for you! My last stay in hospital took me off my Inogene machine to the bullets on 4 liters so that cuts down on the time you can be out and about, even church takes a full bullet of oxygen. So you have to plan shopping ,lunch date, and etc. So you'll have enough bullets filled to last!
Lionel H Howland
I am seventy-seven years old and in my sixth year with IPF. I spent forty-one years in law enforcement, started hunting and enjoying the outdoors when I was twelve, I'm a certified SCUBA diver, have owned nine power boats, have made ten or more Gulf Stream crossings and sailed extensively in the Caribbean with my friend on his sailboat. I've had to give all that up and more because of IPF.
Like you, I also subscribe to rest, healthy diet, exercise and I take my meds. I believe that's part of the reason why I'm still here! We have to admit to ourselves what's going on in our bodies and listen to our bodies. We can learn to do other things that bring us happiness and satisfaction. I can still enjoy the Fall colors, read good books and listen to that mocking bird that sings better than I could ever hope to. Don't forget to socialize with friends and family. I have a brother that I depend upon tremendously, socially and spiritually. I'm fortunate to have a loving, understanding and caring wife too. You need to develop a support network that will go to the mat for you. Have one or more person/s that can act as an advocate to ask questions regarding your care. You probably know someone who would be more than willing to fill that role, perhaps you just haven't asked.
There is a lot of research being conducted that I believe will benefit patients of your age. My wife has a friend whose husband had a double lung transplant and is doing fantastic. You never know what good is just around the corner. Don't be afraid to request medications that will help you with your anxiety too.
Hang in there, pace yourself and don't be afraid to admit you can't run as fast or stay up as late as you once did. You can still smile, laugh and enjoy a good movie or book or even a slow ride in the countryside.
Hank
Charlene Marshall
Hi Hank,
Thanks so much for reading my column and reaching out via the comments. I appreciate hearing your story and wow: I'd love to be a certified SCUBA diver! All that sounds amazing, though I am so sorry you've had to give it up due to our damned disease. I love the tips you share about managing this disease, including the social support. I am very lucky to have many people in my corner too! I will keep in mind your other suggestions; there are still things we can do for sure that bring us joy.
Take care,
Char.
Carol Dyck
Five years ago I too was diagnosed with IPF, but unlike Charlene, I was 79 at the time and have enjoyed a wonderful life, seeing all four corners of this planet. Knowing there is no cure for this disease is hard to deal with and trying to maintain a healthy attitude is difficult. I have a wonderful husband, but he has had two strokes which fortunately have not affected his 'thinking' ability too much, but has affected his balance. This leaves me with being his basic care giver! I am on oxygen for walking and 100 mg OFEV twice a day. Fortunately I have no negative effects from OFEV and am able to maintain our comfortable home with minimum outside help.
In my 'healthier' and younger days I was extremely active in the business world and participated in sports and extra curricular activities. Having IPF has certainly taxed my energy level and at my age now, I am not a candidate for a lung transplant. It's important now to maintain a healthy mental outlook ... which is very very hard at times, but with the help of good friends and good medical care, our lives can stay relatively calm.
I think it's good for people to share their thoughts and feelings through living with this disease.
Charlene Marshall
Hi Carol,
So nice to hear from you again! Thanks so much for reading my column and reaching out via the comments. I appreciate hearing a bit of your story and how you're managing with this awful disease, and the added responsibilities of caregiving for your husband. I am so thankful too that you don't have any side effects of Ofev! Good friends and a good medical team certainly do wonders in the fight against this disease I agree. I appreciate your sharing your thoughts and agree with you; its good and important we do that.
Take care,
Charlene.
TCSteinke
Charlene, idk what to say but TAKE IT EASY ON YOURSELF. I am 44 w/IPF, 16% lung function, trying to get on the transplant list, and still working full time. I also need to slow down but when you need to remain commercially insured to get a lung transplant it makes for some challenges. So I tell myself to take it easy. We only get one life and if we are lucky it will be a long one. It's hard to slow down but even harder to take it easy. So just go easy on yourself and hopefully slowing down will follow. I once read slow is smooth and smooth is fast. We got this!
Charlene Marshall
Wishing you the best too TC! It sure is hard when we need our insurance to qualify for medical reimbursements, I agree. I hope you get a chance to slow down and that your transplant quest is positive; keep advocating!
Char.
Karen Martin
For those of us who are older and semi- or retired, it is easier to rest when we need to do so. Not that we are any happier knowing it really isn't our choice to do that, but rather dictated by this disease. I agree that having a good support network is important. I love that so many people mentioned reading a good book. There are times I find myself realizing some of the things that I will no longer be able to do and that makes all of us sad. There are things that I never even got to do in the first place! Then again, none of us knows how long we have or what that will look like. Allow yourself to live here and now the very best way that you can. Much love to all!
Linda Shernoff
So I’ve been looking at all these comments and they are really hitting home. I was diagnosed 3 months ago (74) and the first time I saw my pulmonologist he sent me home with oxygen 24/7
Must have been struggling for a while but didn’t put it all together tho I had been complaining of shortness of breath for a year. Prior to my diagnosis I had signed up for a holiday luncheon in December. But am now having 2nd thoughts. It takes me too long to recover from outings such as these even though I’d love to join in. With the holidays now here it is so important to know your body and what it can handle without getting off track with your health. People who care about you will understand. Happy Holidays and do what you can!
Charlene Marshall
Hi Linda,
Thanks so much for reading my column and reaching out via the comments. Sorry to hear they are hitting home for you - it's so hard to accept that we can't do the things we want or used to do, isn't it? Adjusting to oxygen is hard, make sure you're gentle on yourself. The fatigue our bodies experience when needing supplemental oxygen is tough, so I find I have to choose my activities wisely. When you have a second, look up the spoon theory: it helps explain this to us and others! Take care and happy holidays to you as well.
Char.
Charlene Marshall
Hi Judy,
Thanks so much for reading my column. How correct you are - if we don't make the choices we need for ourselves, like slowing down, the universe does it for us in unsuspecting ways, that is for sure. Sorry to hear of your most recent hospital visit, and I hope things are getting better for you now.
Char.
Charlene Marshall
Hi Karen,
Nice to hear from you again, thanks so much for taking the time to read my column and offer your insights via the comments. There have been such good pieces of advice shared here, including reading a good book. When I can't physically keep up with the things I used to, I enjoy getting lost in a novel where IPF isn't part of it. Focusing on the now and practicing gratitude is so important, and about all we can do sometimes. Sending love back to you and best wishes.
Char.