Neurocognitive - Graded Activity Study: What Does It All Mean?

[IrisRV]

Great explanation IrisIV. That just crystallizes what the program is about. What are ADL's? activity daily????

Activities of daily living. That stuff ya just gotta do -- stay clean, feed yourself, keep your house clean, that kind of stuff.

 

[IrisRV]

What? I'm supposed to clean? No one told me that. I looked under my sofa the other day. I found (and I'm not kidding) 5 pens, a pot holder, a shoe, some notes and about 2" of dust.

I'm afraid to look under my sofa.

Nobody said we wanted to do our ADLs. Many of us can't do them even if we wanted to. Life sucks when you only have enough energy to do the unexciting ADLs you need to do, but not enough more to do anything fun. Of course it's even worse if you don't have the energy to get out of bed.

 

[IrisRV]

I've been pondering the fundamental difference between a good ME activity program and GET and I think I've got it. GET is all bassackwards, as usual. It says if you continue to exercise, you'll get better. A good ME activity program says, if you get better, you can do a little more. GET inverts the cause and effect.

When good ME activity programs do recommend actual strength exercise, it's usually a very specific kind.

Some suggest (if you are able) training your low level anaerobic (ATP-CP-phosphagen) metabolism to carry more of the load since aerobic glycolysis appears to be crapped out. Since low level anaerobic metabolism only lasts a couple of minutes before it needs replenishing, we have to do < 2 minutes of exercise, then rest. Lather, rinse, repeat.

This should apply to ADLs as well, but try cleaning the bathroom <2 minutes at a time with 2-5 minute horizontal rest breaks. I can't do it. I use some of my precious limited aerobic energy so I don't go mad.

If you can train the functioning low level anaerobic system to do more, you could become a bit more functional -- do more before hitting your upper level anaerobic metabolism (anaerobic glycolysis). In that sense, it could improve your QOL/functionality somewhat. It does jackshit for the root ME, but a little more functionality is usually a good thing. Because you're not using the more slowly replenishing aerobic metabolism, and certainly not anaerobic glycolysis, this small amount of exercise using the quickly replenishing, functioning low level anaerobic metabolism shouldn't (theoretically) take away from your limited energy stores. Theoretically.

It should be obvious that if you want to try this, start low and go slow applies. I do 30 seconds of exercise, then rest. Sometimes 60 seconds. I might work up to 2 minutes before rest. Maybe. We'll see. I'm not counting on it and I'm not pushing it.

 

[IrisRV]

What GET proponents don't get is that we don't build up endurance. You are right. Ass backwards

For me it really depends on what I'm doing. I can sit on a stool And wash dishes and be ok.

But to sit and do PT for my shoulder for one minute does me in. Today I got completely wiped for about 2 hours just laying on the sofa doing nothing.

I remember years ago some people said using their arms really wiped them out. I have the same problem. Folding laundry has to be the hardest thing for me. I found if I keep my elbows close to my body I do better. (Still sucks)

And all of this depends on how I feel when I start. It almost scares me to think about actually doing some kind of exercise.

I wouldn't try exercising if you don't know if you are already going over your AT with your daily activities.

I have a problem with arms over the head or waving arms around too. I've figured out lots of workarounds.

For me, HR monitoring helped the variability a lot. After getting objective data, I'm more aware of seemingly innocuous activities that give me more trouble than I realized.