You Just Can’t Have It All With Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a cruel and greedy chronic illness. I’ve had to accept this, albeit begrudgingly, since being diagnosed with this life-threatening and debilitating lung disease in 2016. Just how cruel and greedy IPF is has become more apparent in the last couple of years as my disease progresses and my symptoms worsen.
The lack of energy a patient with IPF experiences is not captured realistically in the literature on this disease, in my opinion. When I spend time looking up symptoms of IPF, I commonly see things like breathlessness, clubbed fingers, or fatigue. You may equate fatigue with lack of energy, but as a patient living with IPF, I consider them to be different.
I’m regularly fatigued, I certainly won’t try to deny that, but the lack of energy I’m referring to is when my mind wants to do something, but my body just can’t. It doesn’t mean I’m tired and want to sleep; it just means I need to do something where I’m not exerting a lot of energy, such as lying on the couch reading or watching a movie. This happens a lot, especially while trying to balance working full time.
In my seven years of living with IPF, I’ve had to realize I just can’t have (or do) it all. I haven’t fully accepted this fact, but IPF forces you to make sacrifices due to energy limitations. Often, especially as a young adult trying to make a living and thrive in my career, my energy must be reserved for work, which compromises social or other important activities in my day. This can feel like a vicious cycle.
When I’ve had a busy workday, for example, I sometimes don’t have the energy to cook a healthy meal for dinner, though I know my body needs it. Since eating healthy is one of the important things I can do to continue fighting IPF and manage medication side effects, I’ll often order in something healthy for dinner. As you can likely imagine, the cost of ordering in a healthy meal is not cheap given inflation these days, and I already have added costs due to this cruel lung disease.
Another sacrifice I often have to make is choosing which social events I can attend with friends. This decision isn’t taken lightly; I have to weigh the importance of the event, such as a wedding or other milestone, with the risk to my immune system, especially given the COVID-19 pandemic. I just can’t afford to get sick right now, so the number of people present at an event is factored into my decision. While my friends say they understand this, I know it’s hard when I have to decline an event that’s important to them.
I recently attended a weeklong management retreat with the rest of my team, where we were focused on what we needed to do as leaders of an organization. Since we are new to working together, this retreat was also an opportunity to socialize and get to know one another outside of work. I wanted to give the sessions my undivided attention and effort, which took a lot of mental energy, and I was exhausted by the end of the day. Sadly, this meant I had to sacrifice an evening event as a result.
As a team we decided to go see a live performance of a musical, something I’ve been wanting to do for a long time. I was the only one who chose to wear a mask at the venue, and I was also the only one who had to bow out at intermission; I was just so tired from the day. While driving back to the hotel after only seeing half the stage performance, this notion of not being able to have it all or do it all because of IPF was reinforced.
I try to give my mind and body some grace when things like this happen, but it’s hard. I’m in my early 30s; I should be full of energy and capitalizing on social events with friends and family. But this cruel and greedy disease doesn’t permit that. I hate this disease, and I pray daily for a cure for me and all of you reading this column who are likely plagued with the compromises IPF also forces upon you. Hang in there!
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
Margaret Buckley
I really appreciate your commentary and your insights, Charlene. They resonate profoundly, even though I’m at the opposite end of the spectrum - in my mid-70s and have raised a lovely family and am retired after a successful and fulfilling career. Thank you for your efforts and for sharing so generously with us
Manzurul Khan
Charlene,
After reading your post, I am so humbled by your courage, tenacity and generosity to help others. It was only yesterday, I had a visit with my doctor at Baylor and wanted to share some glimmer of hope. He asked if I was willing to participate in one of three Phase 3 clinical trials which look promising, accordng to him. Perhaps, a cure isn't very far away. You being so young and having the better part of a normal life left, would benefit the most. I am 68 years old and hoping to add a few years to my life if this happens in my lifetime. If and when I am accepted in the group, I will keep you posted. In the mean time, continue to live life to it's fullest. Your grace and courage continue to amaze me.
Don't give up.
Best.
Bert Maidment, Ph.D.
Charlene - I have followed your articles for the past 5 years and have responded sparingly to the IPF Forum. Your article today: You Just Can't Have It All With IPF (part of your Living With IPF series). I resonated with your fatigue and the progressively worse restrictions it places on you. Now add your SOB, dragging O2 tanks around, angina, and plummeting O2 saturations upon standing up and walking 10 yards. I just spent 45 minutes making a salad for lunch and I am completely exhausted and spacey. (5 years ago, I could have made the salad in 5 minutes and eaten it 3 minutes). You are right about the symptom descriptions don't say it all when it comes to IPF. Recently, I had to make a very hard decision about my continued consulting work. I just can't concentrate like I used to and just doing a little research tires me out, so I asked my client if I could reduce my role on the development team and limit my hours. I was hard for me to come that decision. My client just said: OK. His understanding is greatly appreciated. I have tried to continually match my expectations with the progressively worsening capacity due to IPF. Pretty soon I won't have any adjustments left which is starting to plague me. So, I continue to search for new treatments at my adjusted pace and will do so until.... BERT
Steven Dragoo
Hi dear friend,
I can identify with all you say - all. My work week is less than yours but I am working all night 4 nights per week in sales making lots of phone calls talking to CEOs so I need to remain sharp. After 15 weeks of working nights, I still have not adjusted to get a good day's sleep. I started working last September but that was very early morning which I like.
Only eating twice a day helps the energy in several ways. I like the extra time and more autophagy. Since I have some heart problems, a minor stroke 7 years ago, PAH, diabetes, and a flattened pituitary, weight loss is important as that gives my heart and lungs a little more of a break. When cooking I try to prepare enough for at least 4 more meals and I know what's in it - low salt/sugar and no preservatives. Of course, I can't do that with salad but I can sit down at the table while I make it.
I am sure you are doing all of these too, Charlene and the only other thought I have is to mention that the supplements I take every day help me a lot.
Stay well,
Steve
Marilyn Cellucci
Dear Charlene,
Your "You just can't have it all...." article was exactly how I feel but couldn't really describe it to my family. I've had plain old fatigue and now this fairly new thing of not being able to do anything is terrible. I can't even make a phone call to arrange appointments. I make notes of things that need to be done and I cannot do them.
Thank you so much.
Take care.
Kindly,
Marilyn Cellucci
Margaret Hannigan
I really appreciate what your saying. My Husband is the one with IPF. For 2 years we have been so isolated. His fear of getting sick keeps us out of social situations and people don’t understand the fear they think because he looks fine he is fine.. You really help me to understand what he is going through but I resent this Illness and what its done to my life as well
Harboe Rune
I sure admire your courage Charlene and what you are able to do having this desease. I was diagnosed in 2016 as well, but doing fairly well. Been on Esbriet since 2016 and seems like the medication has helped quit a bit. Also, I think as pointed out by other people the desease progression varies among individuals. I am not on oxygen yet and was able to fly to Vancouver to take a vacation on Rocky Mountenair. Was gone for 10 days. Have to say at 80 years old the trip was exhausting, but worth it. What a beautiful country. Only problem I had was at Banff where I had problem with my breathin just walking a few steps. I consider myself lucky and blessed compared to other people with this awfull desease. Hang in there y’all. 😊
Regards Rune
Lauren Thomas
Hello Charlene,
I am newly diagnosed (at 37) and you have truly summed up the constant struggle with fatigue. I also work full-time right now, and I get home and frequently have absolutely nothing left in the tank- not for cooking, not for chores, not for fun or social things. Just posting this to say, solidarity.
Margaret Herbert
Truer words were never written, Charlene. We were brought up to think that with determination and hard work we can accomplish what we want to some degree. It's terrible to have a disease, especially one that may not be obvious to others, severely limit what we can do. I had to retire this year because of the fatigue even though I am not on oxygen yet. I was amazed by the number of people who wondered "Why?" since I was doing a good job, enjoyed what I was doing, and did not look "sick." Nobody realized that working for 8 hours took 24. Thanks for your insights.
Randall Thornton
Hi Charlene. Just read your article and the postings by others in our situation. I have now been an IPF person for 2 years and a couple of months. I had my latest lung testing month and things weren't very good. My Pulmanary Function test showed I am down to 33% from 45% last time. My volume is down from 70% to 43%. I don't have much more to go before I'll be placed on the program. My ability to do things keep going down. If I have to bend over, my breath is gone and I get spot and start caughing like crazy. I have to set to get everything back to normal. I keep thinking it wasn't that long ago I was doing carpenter work, ATV'ing, camping, now I can barely put my clothes on or bend over to feed our cats and dogs or clean the cat box. All I can do is hope that I can keep going to do some more things that I have on my bucket list.
Barb Short
So mush enjoyed your incite to this disease. I was diagnosed in 2016. I am 72 and have been on oxygen since Nov. 2020. I had Covid and took the infusion on Monday. Two days later I was worse. Back to ER and have been on oxygen ever since. I’m fine when sitting but when I get up to do anything my oxygen levels drop greatly. The shortness of breathe is getting worse. My son and his family moved to Florida and I cannot fly to go see them. My husband is 79 and it would be an enormous task to drive. Considering the amount is oxygen we would have to take. Stay strong.
Linda Paradise
Thanks so much for your column,Charlene. I am in my 15 th year with IPF, yes fifteenth! Unfortunately, I’m finding some changes with my breathing. My biggest fear now, is having to go on oxygen, so I was foolishly avoiding my doctor. I do now have an appointment soon. My mother, father, aunt and cousin all had lung disease (not IPF) and ended up on oxygen. In those days it was more cumbersome then today but I still see it as embarrassing.
I just want to say how much I enjoy your column and find it comforting!
Thank you!
-Linda