This topic contains 17 replies, has 5 voices, and was last updated by  Jen Cueva 2 months ago.

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  • #18960
     Brittany Foster 
    Keymaster

    I had to get pretty creative with my workouts after being on oxygen for a few years. When I would go to the gym, I would take my oxygen concentrator or oxygen tank and put it to the side of the machine and would usually wrap the cord slightly around something to secure it so it would prevent it from dragging too much on the ground. Something that I had to learn was that it is OKAY to adapt workouts to my needs.

    I have had to use lower weights (if any at all), had to follow the “beginner” trainer in workout videos, and had to find workouts that didn’t have a lot of bending or up and down motion (like too many squats or push ups). I had to find workouts that were okay for me to do and ones that I just couldn’t do with ease (something like zumba was really hard for me especially on oxygen).

    What things have you done to adapt workouts to your needs? Do you prefer workouts videos and working with trainers or do you like to do workouts on your own? Have you discussed adapting workouts with a PH specialist or a physical therapist?

  • #18970
     Jen Cueva 
    Participant

    Great topic. Brittany!

    I’ve talked to my PH doctor and he’s approved my adapted yoga ( I do at home with Youtube, thanks). I also try and do other light exercise videos or even dancing around the living room on my light cleaning days. My hubby does the deeper cleaning, thankfully.

    I’ve been trying to get to the gym with my hubby if it’s not too crowded and I’m feeling up to it. I like to try to ride the bikes or walk on the treadmills. I use my POC when I’m not at home. At home I pin my tubing to me or hold it in my hand so I don’t get twisted up in it, lol

    This week, I have had appointments and labs both yesterday and today, so I’ve been frustrated that I wasn’t feeling up to doing more. The great hasn’t helped either! I’m trying to remind myself that my activity level changes daily, hourly at times. I’m hoping as the weather gets cooler within the next month or so, I can be outside more.

    Your FB group, I’m sure will inspire me even more. I have found that mid-morning or midday is best for me, By the evening, my spoons are exhausted. Do y’all have this issue?

    • #18976
       Brittany Foster 
      Keymaster

      Thanks so much for your honesty in your response on this post Jen! I know that others will definitely be able to relate. It makes things more challengings especially when it’s hard to really plan for a time to go to the gym or do a workout class or something . I’m the same way as you with my physical health and what I feel able to do changes every hour and sometimes just have to take things minute by minute. I can feel fine playing baseball with the kids I watch and then go down to grab a ball that they hit and then my head starts spinning and it’s stop time for me! This is when it’s most important to actually really listen to what my body is telling me or else I know things will get worse if I try to push it.

      My best times for working out are earlier in the morning or usually anytime before 1 in the afternoon. Anything after that I feel too tired and end up napping at 4 and not being able to sleep well at night because of naps too late!

      • #19021
         Jen Cueva 
        Participant

        I am glad that I am not alone here. It is frustrating, but also it is my reality. I agree that listening to our bodies is important, as you mention, our activity and energy fluctuate daily. Thanks for your continued inspiration.

      • #19026
         Brittany Foster 
        Keymaster

        The energy fluctuations are totally something that can throw me off a lot! It’s just incredible that in the beginning of the day I can have a lot of energy most of the time and then throughout the day it just gets less and less. I know a lot of “normal” individuals without chronic health problems are like that too but it’s just so much more intensified when it goes from one extreme to the other in a matter of a few hours and sometimes even within the hour. Have you ever hit a “crashing” point in the middle of a workout ? I have! I ended up feeling okay during part of it and then all of a sudden it was like I got hit over the head out of nowhere and became dizzy and light headed. Luckily I was close enough to home where I could just stop what I was doing and go back and lay down. I would be horrified if this ever happened somewhere where I couldn’t just easily get in my care like if I was on a hike or something like that!

  • #18981
     Rockefeline Denis 
    Participant

    It is very hard for me to do my work out. I do 5 squats and I cannot breath. If I’m in the sitting position I can do some light exercises with my arms and legs. Some days I feel like I can do whatever I want, other days are a struggle. I will try yoga video and see how it works for me.

    • #18985
       Brittany Foster 
      Keymaster

      I have recommended this video to a lot of others and I would really recommend looking through some of her videos and seeing what ones you can do. I LOVED the 30 day yoga challenged and felt a difference in my strength as soon as before the 2nd week. Probably around day 10 did I really start noticing a difference in my flexibility and stamina. It is called “yoga with Adrienne” and it’s on youtube channels ! check it out if you get a chance and let me know what you think!

    • #19022
       Jen Cueva 
      Participant

      @rockie436, I was told by my PH doctor, NOT to do squats. One year, I was trying to do a “30-day squat challenge” and after day 5 I was so sore and felt horrible. When mentioning it to PH doctor, he said no squats for me, it strains your heart more than you think and puts extra pressure on it, too.

      Please check with your doctors before any exercise routine.

      I have enjoyed doing some of the Yoga with Adrienne videos as Brittany shared those with me before. I only do these a few times per week. I know there are chair yoga videos as well.

  • #18987
     Rockefeline Denis 
    Participant

    Thank you Brittany. I will check it out and will keep you posted.

  • #19029
     Debra Eileen Williams 
    Participant

    I recently started with an exercise class at the local Y. It’s geared for seniors so is low impact and a lot of stretching, mild strength, etc. The class is partly chair exercise and partly standing. I have balance issues as well as PH and found that I couldn’t do the standing exercises so I do everything in the chair. But I still move and stretch my legs and arms and twist and stretch my body. I only started in mid June but can definitely see improvement. And the people in the class and the instructor are wonderful.

    • #19033
       Jen Cueva 
      Participant

      Thanks for sharing, Debra. There is a Y near my house. I definitely would need to start with a more low impact class. The main point is that we do something and as you mention, we will see some improvement as we keep doing our workouts.

      As a reminder, as Brittany says, each day, we may need to adapt our workouts based on how we are feeling that day. Listening to our bodies and checking with our medical team is important.

  • #19030
     Rockefeline Denis 
    Participant

    @Jen Cueva. Thank you for the tips. I will definitely talk to my pulmonologist when I see him next week. It’s really not easy to exercise. It makes me so tired.

    • #19034
       Jen Cueva 
      Participant

      @rockie436, most days after I work out, I’m usually exhausted. Some days, I know I will not get any extra exercise in. That’s OK, too. We are all different and our physical limitations change daily. You’re not alone.

      Are you in Texas?

  • #19037
     Rockefeline Denis 
    Participant

    @Jen Cueva, I’m in Florida. It’s very hot and it’s unbreathable. Some days I cannot step outside without raising my heart rate to 145-160. But we have to take it one day at a time and hoping tomorrow will be a better day.

    • #19054
       Jen Cueva 
      Participant

      I am on the Gulf Coast of Texas, I definitely can relate to that suffocating heat and humidity. Hoping today is a better day for you. Taking it one day at a time is OK, it is all we can do.

  • #19091
     Debbie 
    Participant

    I live in Cleveland, Ohio. We had a huge heat/humidity wave in July that wiped my patients energy out! We just took the exercise sessions one day at a time.
    A lot of my patients have such admirable drive and will push themselves for several days in a row, then come in on a Friday with (in their eyes) a poor performance. Everyone who exercises will have days where the accumulation catches up. I really like how you all mentioned listening to your bodies.

    • #19103
       Brittany Foster 
      Keymaster

      Debbie,
      YES the heat really does exhaust me a lot. I also feel it more at the end of the week. I feel like my energy levels just slowly decline and I spend the weekends usually playing catch up and allowing myself to have some rest and hopefully reset some of that fuel that I lost throughout the week. Listening to our bodies is one of the most important things but sometimes I admittedly don’t like to pay attention to what it’s telling me because it can feel overwhelming. I’m definitely more of a stubborn patient that’s for sure!

    • #19121
       Jen Cueva 
      Participant

      Yes, Debbie, the heat and humidity here in Texas wipe me out so fast! It’s frustrating but I ” try ” and listen to my body.

      As Brittany mentions, often I play catch up on the weekend or even the day after, if it’s a really busy week.

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