Managing Bedrest in Everyday Life

Author's NOTE:This is the topic that started this website. My daughter started with CFS and developed POTS over time. We traveled to find a doctor who diagnosed the CFS and helped with medications. She went to PT and OT locally. Despite all this, she had her ups and downs and after 4 years, developed POTS and then became bedbound. There were many days and weeks of intense bedrest, and years of being bedbound. It has been 9 years since she got her first viral illness and started the cycle. We Have learned many things by experimenting. She is finally past the bedbound stage. It is our hope - and the whole reason for starting this website - If the information on this website can help one person keep from becoming bedbound, then it will all be worth it.

For all we have learned, we are still looking for more ideas about what to do when bedrest is needed.Right after developing the material on moving into health, what kinds of movement to do to start the body healing, this topic is next! In addition to talking with our new OT and PT resources, we will be talking with those who are working with patients in the hospital to see what they are doing. We know there is more research with those patients that might help. We will also be contacting the physicians who have been working with CFS to see what they have to say. We know that about 25% of people with CFS end up bedbound. There is much work to do.

If you have ideas or people to suggest, please get in touch - DrKay@joyful-living-today.com.

Times When Bedrest Happens

There are 2 basic bedrest situations which will be different in what needs to be done. The research on preventing orthostatic problems is not practical for either situation. They had to exercise for 30 minutes at a time, 3 times a day, on a sitting bicycle.

When You Are Are Sick

This would be an "acute" situation - one that is expected to pass in a few days. For example, it would be when you are sick, like with a cold or the flu, or even more orthostatic symptoms because your fluids are low,

There are blanks here - there really isn't any published guidance. We are working with specialists to come up with answers. Sign up to be notified when it is posted or to follow us.

1. First, get as much of your fluids and salt in as you can. If you are losing fluids in vomiting or diarrhea, be sure to take in extra fluids to replace what you are losing.
2. Take care of the condition - whatever it is.
3. If you are in bed more than _____ days, try to sit up in bed - at least put pillows behind your head/ and shoulders and sit up at least ______ minutes. Do this _____ times a day. If that's too long, cut the time in half.
4. When you get up to the bathroom, try to add some extra walking around the living room, sit up in a chair for a few minutes.
5. Exercises in bed:

When You Are in Bed Because of Orthostatic Problems

So far, we haven't found any data on how many people with POTS are confined to bed. There is data that 25% of people with Chronic Fatigue Syndrome (CFS) are bedbound.

We will address things to do to manage bedrest and recover in the section on "Move Into Health".

 

 

Kay E. Jewell, MD

    Mother, Caregiver since 2004
    Physician for a lot longer!

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