This topic has 17 replies, 9 voices, and was last updated 6 months, 3 weeks ago by Charlene Marshall.

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    • #18892

      In the developmental services sector, “ADL” is an acronym used to shorten the phrase activities of daily living. Of course ADLs are different for everyone; depending on our schedules and daily routines. As I struggled with a very normal ADL this morning, I wondered to myself which other daily task(s) in our lives as patients living with pulmonary fibrosis (PF) have become the most difficult.

      Some tasks that I find the most challenging are very simple for others, which is why I rarely talk about how difficult some of my ADLs have become, unless I am within the safety of our online forums community. I know I can mention anything here because so many of you (unfortunately) understand the intimate struggles of life with a chronic lung condition. Breathlessness, fatigue (both physical and mental), pain and a persistent cough are just a few of the symptoms we tend to navigate on a daily basis. And, when you think of it: many of these symptoms can easily interfere with various ADLs.

      As an example, I was just standing in one spot this morning brushing my teeth and the motion of my hand moving on top of having my mouth filled with toothpaste (so I wasn’t able to breathe well), I quickly became short of breath. Who gets short of breath simply brushing their teeth?! I’ve learnt from other patients in the interstitial lung disease (ILD) community, including my young adult friends with cystic fibrosis (CF), that unfortunately this isn’t uncommon.

      So I am curious: what are the top three most difficult ADLs (or, activities of daily living) for you since your PF/IPF diagnosis? Here are mine:

      1. Doing my hair: I have fairly long wavy hair, and I like to straighten it on a regular basis. This requires having my arms above my head for an extended period of time, as it takes awhile to straighten my hair and leaves me both fatigued and breathless. This is becoming increasingly difficult….
      2. Brushing my teeth: for the reasons stated above, this “simple” task has become quite difficult for me.
      3. Carrying my bags to/from the car: Regardless of the reason, I am usually leaving the house at least once a day. Whether it is to work, for medical appointments or social outings I am often on-the-go. With that comes lugging my oxygen tank or POC (personal oxygen concentrator) with me, my purse and oftentimes, my lunch bag as well. Carrying these things to the car in the morning often leaves me fatigued before my day has really begun.

      What about you? 

       

    • #18895
       Marianne
      Participant

      Charlene –

      I agree with the lugging stuff with me.  I am constantly taking my laptop and purse with me to work.  Some days are better than others.  When I have to do walking especially stairs some days I have to stop a couple of times.  I am not currently on oxygen or taking any medicine for ILD.

      Marianne

       

       

       

       

      • #18906

        Hi Marianne,

        Thanks for writing and sharing your experience with us. I agree with you, sadly the carrying of items I need throughout the day has become very difficult for me. Sometimes it tires me out before I even start my day! Glad you aren’t on oxygen or either anti-fibrotic medication thus far, and that you stop when needed if you’re doing a lot of walking or up the stairs. This is really important to ensure our oxygen levels remain as high as possible 🙂 Hang in there, and feel free to write anytime!

        Warm regards,
        Charlene.

    • #18900
       Wendy Dirks
      Participant

      For me, it is definitely showering. As a result, I shower less frequently than I did and developed a new routine. I try to shower every other day and I don’t use all the products I once used. I try to be quick and efficient. I put a mirror on my desk and sit down there to do my hair and facial skin care. I rarely use makeup since I don’t go out much anymore but if I do, I also do that sitting at the desk.

      Dressing is also exhausting so I take my time and rest in between items of clothing.

      I stopped cooking long ago because it’s difficult to stand that long. More importantly, cooking fumes set off horrendous coughing fits. I’m super lucky that my husband has taken on this task and does his best to look up new recipes and actually seems to enjoy it!

      • #18901
         Mark Koziol
        Keymaster

        Hello Wendy, I can relate to everything you stated in your comments. For showering my wife got me a showering chair. I like to cook as well so she bought a rolling stool chair. I scooted around the kitchen and did what ever I needed to do. Standing would give me major problems. Keep being as active as possible and do what your body allows you to do. Best wishes. Mark

        • #18902
           Wendy Dirks
          Participant

          Thanks, Mark! Yes, we all need to do what we can and what we enjoy as long as possible.

    • #18903
       Linda Williams
      Participant

      Hi Mark – I was diagnosed a year ago first with ILD and then with IPF.  On no oxygen nor anti-fibrotic med.  I stopped doing stairs very much a long time ago due to OA in my knees, hate holding people behind me up.  But if I have to it is slower now as get short of breath.   Bringing purchased items like groceries also makes me have to sit briefly if there are very many.  And this week and noticing just doing slight activity like dishes or making bed makes me dyspneic.  So I just have to take a break in whatever I am doing, then return to it when breathing better.  When I check oximeter readings though still in 90%+.  I am 74 next month and have had to take breaks in activities before because of OA for sometime but this shortness of breath is something more.   I used to like to drive and travel but am finding I prefer not going too far now.  Just did a 45 minute drive each way recently and stopped to eat on way home.  But very tired that evening.  Don’t see my pulmonologist until September after another High resolution CT Scan.  But if need be I will be setting up an earlier appointment.

      Linda Williams

       

      • #18904
         Mark Koziol
        Keymaster

        Hello Linda, thank you for commenting on Charlenes topic. I understand your feelings about stairs. I have had a transplant and they are still not a friend of mine. Unfortunately most of the time PF is a progressive illness. For some it is a slow process, for others it moves very quickly. It is excellent you are tracking your saturation levels. I still do, especially when I work out. I am happy your saturation hasn’t dipped below 90%. With this disease, you only can do what your body will allow you to do. You take care and keep us updated. Best wishes. Mark

    • #18921
       David Swain
      Participant

      Hi Charlene. Thanks for raising this issue, as I have been wondering about my own ADL. For me, this is my voice. After exertion, I don’t feel particularly tired, although my SAT will drop into the low 80s. However, I find my voice is affected and I experience difficulty in holding a conversation. I wonder if anyone else has experienced this. David

    • #18934

      Hi David,

      Great to hear from you, thanks for getting in touch regarding this topic! I am always curious to hear how IPF impacts patients, sometimes it is the same and sometimes it can be drastically different. This is where the topic of ADLs come in as I realize that some tasks were simple for me, but difficult for others and vice versa so thanks for sharing. I’ve never experienced the change in my voice thus far, but I also am curious if others have. Hopefully someone will respond and share their experience if they’ve had this happen as well. Does your voice return to normal after your saturations rise again? Curious to hear and thanks again for getting in touch.   Is laser still going well for you David?

      Takecare,

      Charlene

    • #18943
       David Swain
      Participant

      Hi Charlene. It’s lovely to hear from you again and I do hope you are doing well.

      I’m pleased to say that my voice returns to normal after saturation picks up. If it’s later in the day picking up will take longer, even though my O2 reading is, say 95%. I’m still continuing the laser therapy even though I haven’t see much change so far. I’ve had 9 treatments and intend to talk to my chiropractor next week about treating the accupuncture points as well. One think I’ve noticed is that after each treatment my SATs and heart rate are all over the place for about 24 hours, after which they settle back to normal.

      I’m getting excited because I’ve another foreign trip coming up in 10 days time – a 10 day holiday in Israel. The flight time there is 5 hours which should be interesting. Also, the tour schedule is demanding, so again I wonder how I will cope.

      Take care of yourself. All the best….. David

       

       

      • #18950

        Hi David,

        Thanks for your prompt reply, and asking how I am doing, very kind of you! Yes, I am doing pretty well, although feeling quite slammed in the last few weeks with both fatigue and dizziness. I suppose it seems silly as these are very common symptoms of IPF, but its been a lot more intense this week. I haven’t been able to make it through a full day without a nap, and sometimes I feel so dizzy that I get my colleagues to drive me home to ensure I get there safely. I booked a doctor’s appointment this week to discuss it further, as it just isn’t sitting well with me. I also had a follow up MRI tonight from a concussion I sustained in a car wreck back in 2017, so that is timely given these neuro symptoms, but hopefully it amounts to nothing. Anyway, I digress…

        Glad your voice returns to normal after your saturations rise again. I’ll keep an eye open for others’ replies about this, to see if they experience something similar. Do keep us posted if you wouldn’t mind on how you make out with laser therapy; I am convinced the more evidence/experiences shared, the better informed folks will be about it.

        Israel – that sounds amazing! Very jealous and hope both the flight and itinerary are successful for you. Enjoy every moment 🙂

        Charlene.

    • #19040
       Bill Rotureau
      Participant

      Toughest thing for me is taking a shower. Can still do it but only every other day. Standing for prolonged periods like cooking, etc., is also draining. Actually, most daily activities that I used to take for granted before going on oxygen 24/7 are now a chore. But, that is my normal (can’t say new as I have been at this for 3 years now).

      • #19042
         Mark Koziol
        Keymaster

        Hello Bill, in my reply to Wendy I mentioned I used a shower chair to alleviate exertion and it worked wonderfully. My wife also got a scooter stool so I could roll around the kitchen trying to avoid my oxygen levels line. The stool worked perfectly as I like to think of myself as a junior chef. You are correct we have to adjust our lives to the new normal and not take anything for granted. Best wishes and thank you for commenting. Mark

    • #19063

      I struggle with showering, the humidity sucks my breath away. Doing dishes is another tough one for me, the bending over the sink puts a kink in my lung capacity. My dad got me a stool to sit on which helps. And getting to and from the car for work or any other reason. For work I use a suitcase with wheels. Sounds crazy I know, but I put my extra tank in it and then put my bag with the tank I am using over the handle. Nothing to carry. But it is still a lot of work, lifting it into and out of the car.

      • #19067
         Mark Koziol
        Keymaster

        Hello Michelle, sorry to hear of your struggles. I mentioned before you might want to invest in a shower chair, this will alleviate the struggle to stand and have your oxygen saturation drop drastically. I’ve had a transplant and still have problems with my diaphragm when I bend over. I try to limit it, but if I do have to bend over at the waist; when I stand upright again, I reset myself before I do anything else. For me takes about 30 seconds. Your suitcase idea is ingenious method to accomplish the two birds with one stone theory. Thank you for your comments, and best wishes. Mark

    • #19124
       Steve Dragoo
      Participant

      Hi Charlene – I have great empathy for you. One of the stranger things I have found out about IPF is if I rest too much I feel lousy as in general malaise and don’t want to do much at all, but amazingly when I go to the gym and do a moderate workout, an hour or so later I feel energized for the next day or so. – Go figure… – Steve

    • #19198

      Thanks for your kind words my friend! Interesting that you find too much rest causes additional malaise and difficulty. I do feel better once I get up for the day and start doing things, although that is tough some times as you likely experience too. I need to start walking a bit more on my treadmill downstairs, or look into getting a recumbent bike. The weather is finally starting to get nice here too so that’ll help I think. I always feel better after walking my dog in the sun, as difficult as that is some times. Thanks for sharing and hope you have a wonderful weekend.

      Charlene.

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