Bedbound to Olympic athlete...really?

[Alvin2]

Despite my skepticism i'm going to try some low intensity walking every other day with planned rests in between to see if I can build my endurance a bit

I wouldn't your only going to hasten your deterioration. If you look hard enough you can find someone claiming everything works from 200mpg carburetors to cold fusion to perpetual motion machines. Just because someone makes an outlandish claim does not mean you should ruin your health by desperately believing them. There is a reason the scientific method was developed. Its not perfect and is subject to human foibles but evidence based logic will get you further then trying things out of desperation, especially when they can harm you permanently.

 

[Dechi]

As does his talk about hibernating "earthworms".

I might sound bizarre but this is a recent study by Fluge and Mella and it was quite amazing when it came out. The term they used wasn't exactly earth worm, it was some other kind of creepy crawly that I forgot.

 

[AdamS]

I wouldn't your only going to hasten your deterioration. If you look hard enough you can find someone claiming everything works from 200mpg carburetors to cold fusion to perpetual motion machines. Just because someone makes an outlandish claim does not mean you should ruin your health by desperately believing them. There is a reason the scientific method was developed. Its not perfect and is subject to human foibles but evidence based logic will get you further then trying things out of desperation, especially when they can harm you permanently.

I do think that some movement/activity is necessary to avoid further deterioration as long as PEM is avoided, but I take your point, there is a risk. The claim about the olympics seems bonkers but if you watch the video, the stuff Dr Lapp suggests is quite sensible.

 

[Alvin2]

I do think that some movement/activity is necessary to avoid further deterioration as long as PEM is avoided, but I take your point, there is a risk. The claim about the olympics seems bonkers but if you watch the video, the stuff Dr Lapp suggests is quite sensible.

I'm doing what i have to to survive, as little overdoing it as i can but i still need to eat and groceries and doctors. I'm continuing to get worse. You really need to stay in your energy envelope, if you going to use some energy use it for things you need to do, not in the hope of increasing your stamina because it will haunt you.
However if you must burn some energy can you come by and help me out, that way you can can condition yourself and i can actually recover from PEM. Please.

 

[Murph]

Some great replies thanks!

Despite my skepticism i'm going to try some low intensity walking every other day with planned rests in between to see if I can build my endurance a bit.

Today I managed:

14 minute walk to the park
10 minute rest on a bench
12 minute walk back home

I started to feel symptoms come on as I walked even marginally too fast or up gradients, so I do seem to be quite sensitive to activity intensity (presumably because of increased metabolic flux). HR was around the 115 mark. Subjectively when the symptoms increased it felt like it was an issue with oxygen supply as well as energy.

I'm not expecting to make any progress really, but if it gives me a slight mental boost or sense of control then that is progress...we shall see!

I honestly think planning the walking and the rests is part of the problem. if you tell yourself in advance that you'll walk amount x and rest amount x, you are not listening to your body and you inevitably overdo it. I really believe we need to do as much as we can to prevent deterioration. But that's hinges awfully on much and can.

You don't know the dimensions of much or can in advance (indeed often you don't know on the day, during, or even in the immediate aftermath). So it's about being opportunistic. Cautious, but opportunistic. Go very easy and grab exercise when and where you can.

I'd also suggest walking for 14 minutes non stop is too much if your total envelope is 26 minutes. Set out in a direction where you can sit down much sooner if necessary. (I know the location of every low fence and park bench within 2km of my house!)

 

[Murph]

I might sound bizarre but this is a recent study by Fluge and Mella and it was quite amazing when it came out. The term they used wasn't exactly earth worm, it was some other kind of creepy crawly that I forgot.

It's our old mate c.elegans, a roundworm, and the hibernation in question is known as the dauer state.

 

[Dechi]

@Murph thank you !

 

[AdamS]

I honestly think planning the walking and the rests is part of the problem. if you tell yourself in advance that you'll walk amount x and rest amount x, you are not listening to your body and you inevitably overdo it. I really believe we need to do as much as we can to prevent deterioration. But that's hinges awfully on much and can.

You don't know the dimensions of much or can in advance (indeed often you don't know on the day, during, or even in the immediate aftermath). So it's about being opportunistic. Cautious, but opportunistic. Go very easy and grab exercise when and where you can.

I'd also suggest walking for 14 minutes non stop is too much if your total envelope is 26 minutes. Set out in a direction where you can sit down much sooner if necessary. (I know the location of every low fence and park bench within 2km of my house!)

Haha...I can definitely relate to knowing where every bench/wall is just incase I need to sit down!

It's hard to say what my energy envelope is, you're right about the 'much' and 'can' variables. For example, i'd say yesterday was a bad day for me and after the walk I laid down for 30 minutes and started to feel really fatigued, but oddly I still managed to get up and drive to the gym later in the evening to meet a friend (I didn't workout as such, just did some stretching and light abs). Astonishingly I woke up today feeling significantly better than yesterday.

The thing that actually seemed to give me a lot of energy back was getting up from being laid down, having a shave and putting my gym gear on, so even though my perceived energy was very low to begin with, it actually improved greatly once I got up and moving. I have POTS too so perhaps dysautonomia/circulation issues contribute greatly to my fatigue perception, skewing it somewhat. Subsequently my energy envelope/PEM threshold could be slightly bigger than my perception.