Adjusting to My Changing Energy Level

Adjusting to My Changing Energy Level

Just breathe, passionate help for the PF journey
I had an experience last week that reminded me of how I am still adjusting to my changing energy levels. A friend stopped by to visit and we had a nice time catching up. She was here for an hour and a half, and I was sitting in my recliner with my feet up, using O2 at 8 lpm the whole time.

I enjoyed talking with her, and we brainstormed about some ideas to help her business grow. I was so glad she came, but after she left, I noticed I felt totally drained. It took me several hours of resting to get my energy level back to where it was, which was pretty low to start.

This is new for me

I’ve been severely limited physically for a very long time, but I haven’t been drained by focusing and interacting until recently. I’m not used to it, and frequently I think I can handle more than what is realistic. I’m grieving about this and trying to adjust to my lessened energy level.

This is quite a change from my energy level before I was diagnosed with PF. I was a marriage and family therapist for 30 years before I had to retire because of my diagnosis. I had no trouble focusing and interacting in very difficult situations with my clients for eight hours a day. I had remarkable focus and sustained energy, and it is hard to see it waning more and more.

Adjusting and reevaluating

This is causing me to have to reevaluate how much energy I expend to interact, and how to use my precious time and energy. What I realize is that an hour and a half spent with a friend is actually a three- to four-hour commitment. It’s causing me to think more realistically about how I spend my time.

Adjusting to these changes is very hard. I let myself grieve and feel sad about it, and I ask God for strength, help and wisdom. He comforts me as I adjust, for which I am very grateful.

How about you?

In what areas do you struggle to adjust? Do you think you can do more than your energy allows? What helps you during these difficult times?

I’d love to hear from you! Please leave a comment below and share with those who could benefit via email or on social media. We’re in this together!

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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.

22 comments

  1. Michael says:

    Sorry to hear about your waning energy level. Are you also taking one of the PF meds that are on the market? I’m just curious if that’s a side effect of the medication also?

    • Hi Michael, good question! I am not. I have pulmonary fibrosis as a rare side effect from chemotherapy and radiation treatment for breast cancer. Those two PF drugs are approved for IPF, idiopathic pulmonary fibrosis, so I am not eligible to get it. They are opening it up to spme patients with PF now, but you have to be stable, and my disease is not right now.

  2. Robin Ives says:

    Kim – what an interesting article this is to me. My husband is still working and not using oxygen. However, I have noticed after a full day at work he is very tired. By the end of the week, he really needs rest on the weekends. I am finding that I do not make any firm plans for us to go anywhere until I know he is going to be able to do it. We spend much of our weekend resting and fit in things here and there. This way by Monday morning he is ready to go again. It is difficult, but at this point it is what we need to do. He feels that his work, albeit difficult, by the end of the day – the activity is good for him. When we are home during a week off, by the end of the week, he sometimes feels he has not been active enough. Oh PF is so difficult and such a balancing act. When change comes, it is an adjustment both mentally and physically. Praying for you!!

    • Thanks Robin! It sounds like you have a really good system, and that your hubby’s work is very important for him to continue if at all possible. Does he take his O2 sats throughout the day? I know before I started doing this I would get down to 85 before I noticed it. I know everyone is different. You are such a wonderful support to him!!!

  3. Lea says:

    I wonder about those times when I do something not all stressful and wear totally out!

    Sitting in a doctor’s office waiting room ran my energy low, but when I related this to someone, I was not understood.

    I’m curious to hear if others notice this as well.

    • Yes Lea, me too. About 6 weeks ago I noticed a big difference in how I feel sitting with my feet on the ground, versus sitting in a recliner with my feet up. We’ve started eating dinner in the living room so I can have my feet up. It really helps. It sounds like such a small change, but it really makes a difference. I understand!

  4. Eric Strayer says:

    I have read several posts here and elsewhere on this loss of energy. Also, it is mentioned in the more technical material I have read.

    For myself, it has, at times, to figure out if I am fatigued or lazy. This is because there is the lack of motivation to get out of be, or get tip and get something from across the room. When I had my lung biopsy my recovery went poorly and it was very obvious I was limited in what I could do for a few weeks. Then this lethargy thing. I have read in more than one place it being referred to as a “malaise”, and that is a pretty good term. That is, for a time.

    Now I have good days and not-so-good days. And, like your experience, talking for a time can take its toll being followed by fatigue and coughing. But don’t we love to talk? Language, after all, is one of the most dynamic elements of our place in evolution. It is an enormous step from simple social patterns of numerous animals to that of complex post-agrarian societies. I mean, here we are, using language to share important information relevant to our survival as well as bonding as a species. And so on and so forth.

    Today was a bad day. I had one simple half-hour doctor’s appointment thirty minutes away. My wife drove. I was beat and depressed. I had no interest in stopping for lunch. No energy. No desire at all. A rather dark feeling.

    This is not an every day thing for me, although it appears to be heading in that direction. At times I can’t read or even follow a decent line of logic from a Youtube lecture. Popular shows on television are becoming more and more tedious. After all, is watching formulaic shows and films how I want to spend my remaining time?

    I have just hit the need for 5 Lpm if walking for more than five minutes. Lying or siting is around 2 or even less. Things change fast in the morning. As many of your readers know, if not all of them, the shower is quite a test of one’s endurance. It is now a three stage process with two minute or more breaks to get my energy and O2 back. And of course there are those inexplicable moments of shortness of breath while still showing adequate O2. So it goes.

    But all said and done, the fatigue is just one more obstacle to making choices in social participation and even just taking care of one’s self.

    best to all,

    es

    • Hi Eric,

      So sorry you had a bad day today. Those days are so hard. It’s so normal to feel discouraged and depressed when we deal with such difficult everyday situations. I’m so glad you shared, and hope will again soon. Many blessings to you

    • Larry says:

      DITTO TO ERIC: I could not say it any better, just with a little less proper English,(NOT BETTER, YOU NAILED IT). I wake up fatigued, my smart watch tells me I’m getting an avg. of 6+ hours weekly, with at least 3 nights @ 7 hrs. I’m on OFEV 150 MG 2xDAY for IPF, 2K METFORMIN for diabetes, and couple other for blood pressure and heart fibrillation. Sometimes I feel like just stop taking all the meds and see if the fatigue would go away, however when I think of what may happen if I do that I need to find another alternative. Seems like I better PRAY a little for some other solution.
      I’m on 2 lO2, 24/7, and can walk slow for about 200 feet and my sat level drops to 85-87 heart rate 120-122, breathing begins to be not good. back in early 2014 I could walk without O2 for about 600 feet and sat level would drop to 87-90. this was not to bad. I started “ofev” at this time.
      I realize I have a double jeopardy situation with IPF and Diabetes. Both of which the meds, have an effect on the digestive system and controls the energy /fuel supply to the rest of the human body, I’ve asked my doctors about this but no good answers, so @80yrs I’ll keep on trucking and say my PRAYER FOR YOU’LL OUT THEIR WHO HAVE SIMILAR PROBLEMS AND FOLLOW THE ADVICE SUPPLIED. Sitting down all day puts red spots where they don’t belong! SO GET UP!

      • Janis says:

        I’m positive that part of your fatigue is from the Ofev. It knocks me on my butt! I’m not on 02 yet so it’s pretty easy for us to travel, which we do quite often. I figure I’d better do it now before I can’t. At any rate… The fatigue from the drug is so bad for me that I thought about quitting it. Dumb idea! What I finally figured out is that if I take it only at night when we’re traveling, I don’t get tired during the day. I realize I’d be better off taking it all the time but being sooo fatigued would ruin every vacation! My doc thinks it’s a great way to maintain quality of life without dumping the drug. I’ve been doing it for a year and it’s working great.

  5. Maureen Lake says:

    Happens to me. I have even had to cut way back on babysitting the grands, only have them when my husband is home also.

  6. Jane-Ann Schutt says:

    My description of the fatigue, weakness, is like someone passes a wand from my head to toe and takes all my energy. This has happened twice and for a couple of days. I recover and am ok again. What I want is more info on how pulmonary fibrosis works eg. I used to have migraines and knew aura,stomach upset and the headache. Want the same info on the fibrosis. Do we continue with weakness till we cannot do anything or do we keep losing lung function till we cannot breathe and die?

    • Jane-Ann, Your frustration is so normal. There are many other diseases whee symptoms and progression is known. PF is different, and it’s progression is different for everyone. There are so many factors: etiology of PF, age and health of patient, and a whole lot of unknowns, which is very frustrating. My experience over the last 3 1/2 years has been periods of stability, and slow periods of decline. My understanding (in general) is that it slowly gets worse until we become bedridden and pass away. For some, there is the possibility of a lung transplant. I’m sorry to lay out a stark answer. I wanted to answer your question honestly. Blessings to you my PF friend.

  7. Charly Hornbrook says:

    I recognize myself in your description of fatigue and do nothing days. I am a retired man of 82 years, and was healthy until I was prescribed Amiodarone by my heart physcian 4 years ago. They finally took me off of it and I spent the last two years supposedly being “healed” from my PF symptoms, but the treatments obviously did not work so I am in the throws of a full PF debilitation. I can no longer work outside or even walk more than 10 steps without total fatigue. Same for inside moving from room to room. Thus I am stuck in my recliner with the TV remote for company. My wife is great and as a retired hospital Dietician, keeps my foods and meds in line for the heart, PF and my Diabetes II. Without her I would be lost. I do not have the energy to perform even the basic exercises so I can fully understand getting exhausted from a friends conversation or telephone call. I can no longer enjoy my Amateur Radio hobby as talking tires me out too much. I can only hope there will be some break-through medicine that will help clear my lungs in the near future. I get the PF news so please keep writing and commenting.

    • Hi Charly, Thanks so much for sharing your story. I appreciate you sharing your experiences. It helps all of us know we are normal and doing the best we can on this difficult journey. So glad you have a wonderful wife to help. Blessings to you both.

    • Larry says:

      Hi Charlie, I’80 and I was taking Amiodarone for A-Fib for about 7-8 months prior to having an ablation for same,prior to this I was on several other meds and none of them would help my problem, (with the heart).Without to much history here the heart problem was for several years prior starting 9/09/09.
      Feeling tired has been a problem for a few years with me especially with the A-fib meds, I’m responding to your comment about the Amiodarone, I feel that this medication is a known cause of some lung problems and another medication which is a derivative of it, supposingly without the lung side effects, was to replace it. I was on this medication for a couple years till I caught pneumonia in 2013 and again in Jan 2014 and diagnosed with IPF in March 2014., Like you thanks for a good wife and help in fighting the benefits of living to a ripe old age, hopefully with our experiences with dealing with heart problems, diabetes, and IPF we an help those who at reading and working on developing treatments can find benefits for our grandkids and others. Hang in there and keep on trucking. I have more problems controlling my sugar than anything. I’m on metformin for diabetes, Ofev for IPF, Plavix, ATORVASTATIN, HEART, Irbesartan for BP with these who is not tired and lazy!!!

  8. Lola Bowling says:

    I started OFEV and pulmonary rehab a couple weeks ago. I take the OFEV as directed. I had rehab for half an hour. Ever since I’ve started the medicine and the one time at rehab I have been so fatigued I can’t stand it. I don’t remember being told or reading anything that a side effect of OFEV might cause fatigue. Has anyone else had this happen to them or someone they know. I cannot function anymore.

    • Hi Lola, I am not on OFEV, but I have heard from quite a few patients that fatigue is a common side effect. So sorry. It’s possible it will get better as your body adjusts. Talk to your Doctor about this.

    • Janis says:

      Fatigue/exhaustion is definitely a side effect of Ofev. I have about 3-4 good hours a day. Otherwise I’m so tired that even writing out a check to pay a bill is too much. On days where I really want to feel alert and full of energy I just skip my morning pill. Then I’m back to being the Energizer Bunny! Really! I know it’s important to always take the drug but skipping it when I want quality of life is far better than dumping the drug completely. And I’m not even on oxygen yet!

  9. Jon says:

    I get up in the morning with the most energy I will have all day. If there is something I need to do I do it in the mornings. Riding the lawn mower is not so bad but spending a coluple hours on it is all I have.
    Holding my breath is an unusual phenomenon, if I lift something, swallow food, take a shower, or anything where I hold my breath recovery is inevitably the new thing I have To do.
    I can set in my chair and watch TV without too much breathing labor however getting up and moving around leaves me short of breath. I judge how much I can do by my heart rate. I ware a wrist watch that tells me my heart rate and when it gets over a hundred I start looking for a place to set, which is another unusual phenomenon, I cannot recover my breath standing or lying on the ground I have to be setting.
    As you can tell I am beginning my PF journey.

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