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AB+72

What do you guys do for exercise?

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Lately my symptoms are really stiff and just making myself food is all I can take.  I have not always been this bad and I'm hoping to climb my way back out.  But as I do, I have never really had an exercise routine.  But when I'm not at my worst,  I usually do the dishes and figure that is some kind of exercise.  I only did 1/2 hour stints.  Lately I can't even manage that and my daughter has taken over that job.  Thankfully. 

But it sounds like even when you some of you are pretty bad off you try to exercise.   What do you do?  i mean lately I've just been doing a few arm circles with my arms all the way out for a minute or so.  When I'm feeling up to it.  Trying to keep my shoulder muscles with some strength.  And like I said I still cook myself stuff.  Although nothing crazy.  It's usually a simple affair to keep it to a shorter time period. 

 

 

 

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Regardless of how good my days go - I usually do some exercises every day. Lying in bed I can do simple leg exercises and cores: lie on you back, put both hands under your butt, lift both head and legs and do scissors from left to right with your legs, 5 rotations. Then rest. If you can then do it again. Then you can lie on your back, lock both hands behind your head and touch left knee with right elbow then switch to  right knee with left elbow. Do this 5 times each. Then rest and repeat ( or stop if that's enough for you ). I stop when I feel energized from the exercise, not exhausted. Also - I use light weights or an elastic band and do sitting exercises. You can buy these at Walmart or amazon and you can also purchase books with exercise ideas specifically for weights/ bands. And when I feel very good I do standing exercises: stand at your sink holding on to it and switch from standing on your tip-toes to standing on your heels. Then hit each butt cheek with your heel. I do this 5 times each. Then you can also bend your knees or extend legs to your sides, all while standing at the sink. I do this all for about 1 1/2 minutes or until I feel I had enough, sometimes 30 seconds is enough. All of these exercises help prevent pooling and stimulate circulation but they also are good for your joints. I hope you will like them. 

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I started on a stationary bike along with at home PT strength training.  After a year or so I stated with PT at a facility with a water treadmill plus increasing strength training there and at home with bands/free weights/balls.  I still did the bike a couple of times a week. After another year I got a home rowing machine and started an upright treadmill at PT.  I’m going on two years of PT and cannot recommend it highly enough.  I am probably going to get an upright treadmill soon as I want to increase upright time which is still quite limited.  I worked up from 3 minutes every other day on the bike simply because I wasn’t going back to how very ill I was again (84 pounds, TPN, severe malnutrition because I couldn’t eat).  It was sheer bloody mindedness.  I attribute much of my improvement, limited as it is, to exercise.  Other good forms are swimming if you have someone with you.  I can’t handle busy places at all and am home bound so swimming wasn’t for me but if I can manage aerobics 3-4 times per week and strength training 2 most weeks anyone can work up to it and beyond.  I tailor exercise to activities and it’s taken awhile to learn to add complete rest days after Dr or PT appointments but you will learn what your body needs with time.  Ask your Dr about the Levine POTS exercise program, mine is a modified version.

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I walk my dogs every day, each one separate. Sometimes we can only go a short distance, like today, because it is very hot weather. I prefer when I walk them late at night, we go after dark when it is cooler and there is a lot less sensory overload which triggers my symptoms. There is less noise, less light, less traffic, less vibrations. I can walk much farther with them after dark. I do also go to PT and we work on core and balance which is what I need most help with. At home I have some hand weights and a ball I can sit on and march, and some balancing platforms too. I don't go crazy. And I am careful to not think of it as exercise when I am home, I still think of it as physical therapy to pace and moderate myself. I can overdo it and that's not good at all. When you begin a physical therapy or any exercise program you don't start out running a two mile race, realistically you start by learning to bend so you can put on your own sneakers. Whatever form of exercise you choose be kind to yourself and remember that it's all incremental. Doing just a little everyday lets you build up to where you can do just a little more, and then more and more. And keep your counts low--I never do more than thirty of anything and for new stuff it's less than ten reps. I absolutely do not force myself to do more than I feel comfortable doing. I do not push the envelope or I get very exhausted and it lasts for days. I must pace my spoons. DINET recently posted a link to Sitting Tai Chi exercises that are very gentle and passive yet still perfusing--a very good place to begin. I like that whole site, they have many possibilities. 

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I'm experimenting with arm-pedaling! 

Five minutes yesterday
Seven minutes today.
I also lift weights and do stationary biking (but I want to swap out the stationary biking for arm-pedaling as per an experiment)

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