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    • #22617
      Brittany Foster
      Keymaster

      I have been on a “limited activity” order for a few times in my life. Recently I was placed on “limited activity” until I started to restore some weight with my feeding tube. I wasn’t allowed to do much physical exercise other than just light walking. This included lifting, going to the gym and increasing my heart rate, and I mostly had to think of more stationary things to do during the day.

      During this time, I tried to keep my MIND as active as possible even though my body couldn’t move as much. I stayed busy writing columns for upcoming weeks in case I wasn’t able to write during future weeks. I also spent a lot of time reading and found that I LOVE a good psych thriller.

      Even though some of us have been on “limited activity” orders, we still need to find ways to stay active through the day, even if that means working out our mind. What things do you do to stay active that don’t involve exercise and physical activity?

    • #22636
      Jo Ann white
      Participant

      I cook…a lot! Mostly work at the kitchen table and this gets me up and moving briefly often.

    • #22645
      Brittany Foster
      Keymaster

      Jo Ann, I think that it’s great that you cook and stay busy that way! It sure is a great way to pass the time too. What types of things do you enjoy making the most? I always loved making any pasta dish. I just made a great one with my boyfriend over the weekend with a garlic creamy sauce with spinach, mushrooms, and tomatoes. We ended up taking it to a party that we went to and everyone loved it. It was almost like a pasta salad !

    • #22650
      Jo Ann white
      Participant

      I make a meatloaf with ground veal, garlic, lemon pepper, grated lemon rind, lemon juice, an egg, and plain Panko breadcrumbs topped with sliced lemons. Lots of protein and no salt! Also lasagna with lots of cheese and spinach and herbs with unsalted chopped tomatoes or low salt spaghetti sauce. Steamed spinach with unsalted butter. Roasted asparagus with olive oil, pine nuts and Parmesan. Plus lots of hard boiled eggs and cut up fruits. Hard to do low salt and lots of fruits and veggies with prepared foods! Also keep unsalted cashews by my exercise bike or in the car for protein after exercising. I use the toaster oven and microwave a lot to keep the oxygen tube away from the hot oven but was told in rehab to put cannula on from back of my head instead of under my chin to keep the cord behind me. That worked great making Xmas cookies and other holiday goodies.

    • #22652
      Brittany Foster
      Keymaster

      Jo Ann,

      That really makes my mouth water for all that food! Sounds delicious. I love that you are making a lot of your own food and watching the salt intake but it still seems like everything you make is so flavorful and yummy! Especially that meatloaf, that sounds delicious ! Really unique using the lemon too. Good advice from the rehab too about the oxygen cannula. I have seen people wearing it behind their head instead of in the front of their face and I bet that would help with making sure it’s not getting too hot or melting the plastic. I really enjoy baking especially for birthdays or holidays ! Making cake balls is one of my favorites. I make them with the kiddos I babysit for too and they love doing it and dipping them. It can get messy but that’s why I have TONS of parchment paper lying around so it makes for an easier clean up!

    • #22816
      Margie Novak
      Participant

      Jo Ann and Brittany, it is nice to read about cooking. That is one thing I would like to do but I get extremely tired from standing. Do either of you have that problem and, if so, how do you alleviate it? I know I could sit down and chop and stir things but then someone would have to be in the kitchen doing things for me. For some reason, with PH, lately it seems like I always need to have someone else around to “help” me with something. But, I love to bake… Unfortunately too, I have to limit with the sodium and all. I do not have to tell either of you… some times this illness can really difficult to handle. Take care

    • #22842
      Brittany Foster
      Keymaster

      @margie-novak I know that for me it is a challenge to stand up for too long because I have a lot of blood just pooling and not really getting circulated in my body as much. Something that used to help me with this would be to have one of those rolling chairs to sit on. I really liked the medicine ball rolling chairs. I used it in my classroom as a teacher too and it helped take off some of the stress on my body from standing up all day. Maybe something that is more adaptive and mobile like a rolling chair or something would be able to help you? Or one of those walkers that you can rest on if you have to. I have seen people use those just to provide some extra support if they know they are going to be up for an extended amount of time ! If it allows you to complete a task then WHY NOT!?

    • #23590
      Jo Ann white
      Participant

      Daily half hour of aerobics on the exercise bike and getting up and moving around have really helped with the leg swelling. And I generally feel better. Not using a lot of resistance or uphill on the bike and use an arm cycle if I can’t make it upstairs. Pulmonary rehab said aerobic exercise was critical to maintaining my current activity level (5 liters oxygen 24-7 for 8 months now) and so far that’s been true. Reaching and bending leave me dizzy and hurting but anything else in moderation seems ok.

    • #23605
      Brittany Foster
      Keymaster

      Jo Ann,
      yes reaching and bending actually limit your flow of air so that is probably why you feel worse when you do those things. I know that I really have a hard time bending down to get something or when I am cooking if I have to reach for a pan below me and then get up it’s like I feel that heavy head rush all of a sudden! Do you get that head rush feeling too that I’m talking about? Sometimes I have to remind myself to put the pans in a better to reach area. Even doing something like hanging clothes on a hanger and reaching up to hang them up makes me dizzy ! I am glad that you are able to get that exercise in though and maintain the function and level of oxygen that you are at now. That is important. As long as there isn’t a lot of decline happening I’m sure the goal is to keep you stable where you are.

    • #23608
      Jo Ann white
      Participant

      Brittany
      Yes I get the head rush you describe. I have also moved the things I use most to the most accessible shelves. And this months 6 minute walk and lung function tests were actually slightly better than 3 and 6 months ago so meds are helping but it is also because i am more comfortable with supplementary oxygen and make it a point to stay as active as I can without overdoing it. Not sure what effect being confined totally to the house will have tho!

    • #23610
      Colleen Steele
      Keymaster

      Hi Jo Ann, I just want to mention that I was happy to read that you are experiencing some improvement. It’s great to hear slightly better than slightly worse. I hope the meds continue to create better stability for you.

    • #23622
      Brittany Foster
      Keymaster

      Jo Ann, do you have a space in your house that you can turn into a workout room of sorts? I have spent a lot of extended time in the house so if you need some good recommendations for some indoor workout videos to try out, I think I am going to start a post with some of my favorites and others can add to it!

    • #30190
      Randy
      Participant

      So far, I have only done the 6 minute walk only once about 1-1/2 yrs ago! And I didn’t even finish the 6 minutes, I had to quit at 5:45.

      Nowadays walking from the house to the car pretty well does me in. That being said, I occasionally meander about 100′. Usually when I am stationary and using the POC I have it on the three setting to keep my O^2 above 90.
      If I move from place to place, like meandering or going into a store or a restaurant, I crank it up to 4 or 5 which does little good, and my O^2 will drop to the mid 80’s.

      When I get that far I am extremely gassed, like I just ran the 440.

      Makes me wonder how much longer I have.

      I just don’t know if I’m overdoing it or not doing enough.

    • #30206
      Jen Cueva
      Keymaster

      Hi @ardyyurtyahoo-com, I am sorry about the decrease in your physical functioning. I, too, have not had a 6MW test in years. But, I use a wheelchair for distances.

      As you mention, if I am going more than a few steps, my O2 is not staying up. I hate going into a restaurant and having to sit and rest before I can order my drink.

      It is not uncommon for us with PH to feel like we ran a marathon after small activity. YOu are not alone.

      What does your PH team say about this change in your activity level? Any new treatments that they can add or try?

    • #30215
      Colleen Steele
      Keymaster

      @ardyyurtyahoo-com this is one of the both physically and emotionally challenging parts of this disease. Not having the energy or the breath to go the distances that you use to can be a difficult change to accept.

      My son often used a wheel chair for long distances and at one point we even got him a mobility scooter. It gave him a little more independence.

      I was wondering the same thing as @jen-c, what is your doctor’s reaction to this decline? Sometimes a change in medications, or something added can make a difference in quality of life.

      One tip for the 6 minute walk…have someone take you in a wheelchair to the area the test will be done. That way your energy is saved for the test and not used up walking the hospital or clinic. This is what I use to do for my son.

    • #30227
      Jen Cueva
      Keymaster

      That’s an excellent tip, @colleensteele. Often, when I think I walk with my oxygen, my hubby suggests using the wheelchair, so I don’t exhaust myself by just walking in somewhere. This is not only to appointments but to larger stores and or restaurants, etc.

      I did have an electric scooter/wheelie for a while but only used it a few times, so I sold it. The one I had was a hassle to load and unload. Was Cullen’s scoother lightweight and foldable?

      Thanks for sharing; perfect reminder.

    • #31425
      Randolph Reynolds
      Participant

      Due to my O2 tank I am somewhat limited but I do walk when I am down town but there are limits.  I also ride a stationary bike about six days a week for 2 miles or more.  My limit is a combination of heart rate and whether I feel a little faint.  Jen’s use of an ebike has merit but I haven’t made the attempt to get small oxygen bottles so I can use a back pack.  We are somewhat caught in a bind trying to keep our bodies from atrophying.

      • #31436
        Jen Cueva
        Keymaster

        Hi @ripple76, it is unfortunate that we are fighting to keep our body and muscles from atrophying. I am happy that you can continue to walk short distances. The bike rides certainly do work our muscles. This includes the stationary bike as you ride and the e-bike that I have.

        Sadly, I have only had a short ride this year. I am looking forward to when the weather cools down a bit to get back out there. The feeling is unexplainable. I hope that you can obtain some smaller portable tanks to use as a backpack and get outdoors. It is so refreshing and takes more strength than I remember as a kid, LOL.

        Thanks for your feedback and for sharing your experience about limited activities.

    • #31434
      Hall Skåra
      Participant

      Instead of running which I did before I got sick, I now walk. I have a dog which I call my personal trainer because he pushes me to go outside for a walk twice a day. I usually walk anywhere from 30 to 90 minutes.

      Instead of biking on a regular bike which I did before I got sick, I now bike on an electric bike. I love it and can bike long distances without any problems. I’ve worn a pulse belt while biking, and I see that my pulse is about the same as when I walk. If I get tired, I simply ask for more help from the electric engine.

      In addition, I go to the gym three times a week. I do circle training, but at a low intensity. I scan my phone before starting the circle of ten stations, and each machine is automatically set and adjusted as I do my exercise. This makes it effortless and fun.

      In addition, I have gotten myself a couple of new hobbies. I like to take photos as I walk and have bought myself a nice camera. In addition, I started playing backgammon on a competitive level after I got sick. At times, the fatigue bothers me, but it usually goes well since my adrenaline keeps me alert. In 2013 I became Norwegian champion and I later also won London Open during a large international tournament.

      Who says that one cannot have an active life even though one has PH? 🙂

      • This reply was modified 1 month, 1 week ago by Hall Skåra.
    • #31437
      Jen Cueva
      Keymaster

      Wow, @hall-skara, congrats on your championships!

      Your story about continuing to exercise and participate in activities that you enjoy is inspiring.

      I was diagnosed 16 years ago with PH. I was pretty stable until a bad case of COVID almost took me last year. I am still recovering from that. But I, too, have an e-bike and love it! My husband cycles, so this is a hobby that w can both now enjoy. As I mentioned to @ripple76, I have only been on one ride this year. I look forward to cooler weather here in Texas.

      You mention walking your dog as exercise. That is an excellent way to get some steps in and enjoy the outdoors. I am limited with walking distances. But I have been mentioning to my husband that I want to try and do this a few times per week. I am not yet cleared to walk much from my PH docs. I use a wheelchair for distances but am ready to give that back, LOL.

      One of the creators of our forums, @brittany-foster, also walks her dog often, and she is amazing. She recently had heart surgery and was back walking shortly afterward.

      Thanks for sharing such an inspiring post. Many of our members, myself included, need this bit of hope to help us stay motivated.

      May I ask what PH treatments are you currently on? Have any worked better for you, as far as your exercise tolerance?

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