The Exercise Catch 22

[Keela Too]

I wrote a blog post that might be of interest:

http://sallyjustme.blogspot.co.uk/2014/07/the-exercise-catch-22.html

I'm hoping it is helpful to some...

 

[minkeygirl]

I've been sick for almost 20 years and one of the first things I learned was only do 50% of what you think you can do. Today, reaching for the remote is that 50%. Exercise on any day is out of the question.

 

[TigerLilea]

I haven't found pacing myself helpful at all so I push myself until I crash. We only get one shot at life here on earth so I decided long ago that I wasn't going to waste any more time than I need to on resting. My doctor had me on total rest and after four months even she agreed that it was a mistake. My exhaustion and fatigue actually got worse - not better - and mentally I really slowed down. It isn't worth it. We aren't guaranteed any tomorrows so I'm not wasting my todays. To be physically inactive can only makes things worse over time. Our bodies are meant for movement. I've read several times researchers who have said the same thing - that those people with CFS/ME who don't get any exercise are the least likely to ever see recovery.

 

[minkeygirl]

I don't know how much I agree with that @TigerLilea. When I first go sick I was up and around all the time. I volunteered at an animal shelter 5 days a week and I worked at a cat sitter. I went out with friends, and had a good time. But the course of the disease couldn't be stopped and the inevitable happened.

I think you have to combine aggressive treatment with whatever approach you want to take regarding exercises. There is no one size fits all. But I think, living life to the fullest without any kind of treatment isn't going to help you recover.

 

[TigerLilea]

I don't know how much I agree with that @TigerLilea.
I think you have to combine aggressive treatment with whatever approach you want to take regarding exercises. There is no one size fits all. But I think, living life to the fullest without any kind of treatment isn't going to help you recover.

I don't for one minute think that keeping active will be a cure. And I'm all for treatment. I just personally think that if you spend most of your days resting you are less likely to see good results down the road.

 

[Mij]

I haven't found pacing myself helpful at all so I push myself until I crash. We only get one shot at life here on earth so I decided long ago that I wasn't going to waste any more time than I need to on resting. My doctor had me on total rest and after four months even she agreed that it was a mistake. My exhaustion and fatigue actually got worse - not better - and mentally I really slowed down. It isn't worth it. We aren't guaranteed any tomorrows so I'm not wasting my todays. To be physically inactive can only makes things worse over time. Our bodies are meant for movement. I've read several times researchers who have said the same thing - that those people with CFS/ME who don't get any exercise are the least likely to ever see recovery.

When you say crash do you mean PEM? The word exercise can be misinterpreted, movement is good if you can do it without PEM. I feel worse when I don't do anything but I stay within my boundaries so not to get PEM. I do benefit from pacing and resting though. It's a difficult balance sometimes.

 

[minkeygirl]

I don't consider what I do as resting. It's recovering from doing things. Sometimes as bad PEM, other times, it's waiting until I can breath more comfortably Once I've recovered it starts again.

 

[Keela Too]

Sadly for me every crash is permanent... a flare may last a couple of days, but when I don't recover in that time, then I know my level has dropped for the long-term.

I guess everyone is different, but until you know you can bounce right back up after every crash - to where you were before - I really think a precautionary approach is best.

And in case you think I just rest in bed - I don't. I still find other ways to do what I love to do.

Check out my other blog on dog agility: http://abilityforagility.blogspot.co.uk/

 

[Mij]

I don't consider what I do as resting. It's recovering from doing things. Sometimes as bad PEM, other times, it's waiting until I can breath more comfortably Once I've recovered it starts again.

Do you ever feel in a state of rest? It took many years of training myself to lie down and rest even when I'm feeling ok.

 

[minkeygirl]

@Mij Rarely do I just sit and stop. But that has more to do with my OCD and probably ADD. My brain is all over the place, never quiet so it's hard for me to just "be". What I'm doing works fine for me. I've had lots of years of experience.

 

[ukxmrv]

I don't think that there is a catch-22 for me. We have discussed de-conditioning on other threads and asked the questioned there.

For me there is no catch 22. Resting helps me to feel better and then be able to do more. Resting "too much" for me doesn't happen. There is no choice or decision to make for me.

There is a glass ceiling for sure and that is the hard part. No catch-22 though for me. It's a clear problem of a limit on my exertion.

 

[maryb]

I don't think that there is a catch-22 for me. We have discussed de-conditioning on other threads and asked the questioned there.

For me there is no catch 22. Resting helps me to feel better and then be able to do more. Resting "too much" for me doesn't happen. There is no choice or decision to make for me.

There is a glass ceiling for sure and that is the hard part. No catch-22 though for me. It's a clear problem of a limit on my exertion.

I agree, for me too I either can or can't do it. If I can well and good, if not I don't. The feelings of frustration never really leave me but I can live with them.

 

[Valentijn]

I don't think that there is a catch-22 for me. We have discussed de-conditioning on other threads and asked the questioned there.

Yes, I don't think there's ever been any proof of deconditioning resulting from patients doing less than they safely can. If deconditioning does happen at all (likely but unproven), it's due to the limitations imposed purely by the disease itself.

 

[Artstu]

@Mij My brain is all over the place, never quiet so it's hard for me to just "be".

Mental exhaustion is as debilitating as the physical exhaustion for me. Brain and body switched off with no one home.

 

[Keela Too]

Indeed I agree.... I too find it very hard to do little enough.

Yet I know I have deconditioned through all this. Which frustrates me!

Of course I agree, there is no way I can prevent this deconditioning really. If I do more I'll be left with much less ability, so will decondition further!!

So the only answer is to do less, as you all rightly point out. Maybe catch 22 wasn't the right title, but it appealed to me at the time.

 

[taniaaust1]

I've read several times researchers who have said the same thing - that those people with CFS/ME who don't get any exercise are the least likely to ever see recovery.

Its usually more that those who cant get any exercise are the ones which are already the sickest and hence less likely to recover.

Many of us due to not pacing well have ended up far sicker, I ended up bedbound for 9mths due to that. And I didnt have any choice at all but to stay in bed as I couldnt even stand up much of that time.

I hate being in bed and are never there by wanting to be there but cause I know if I dont, I do end up much worst and will be there then far longer. Obviously your illness is quite different to my own.

 

[taniaaust1]

I don't for one minute think that keeping active will be a cure. And I'm all for treatment. I just personally think that if you spend most of your days resting you are less likely to see good results down the road.

I had a full remission for 2-3 years, how I got there was by aggressive rest therapy. I know I would of never had that remission if it wasnt for that.

 

[Mij]

I had a full remission for 2-3 years, how I got there was by aggressive rest therapy. I know I would of never had that remission if it wasnt for that.

I attributed a big part of my improvement 14yrs ago from complete rest although there were few times I overdid it. It was when I started improving and doing more physical activities (exercise) that I started experiencing PEM for the first time during a time I was feeling physically BETTER.. Even my cognitive abilities declined when I didn't have problems before that. Feeling improvedt doesn't mean PEM will go away, it just gets worse over time the more you go over your own limit.

 

[soxfan]

The mental exhaustion is much worse for me as well....it is actually what causes my crashes. I have never crashed or had PEM from physical exercise etc. My symptoms are totally neurological in nature and always have been right from the start.

The fatigue was more exhaustion in the beginning where I could hardly put one foot in front of the other but over the years the fatigue has changed for me and results in too much mental activity or minor stress. This can include shopping...socializing...computer...driving...but the thing that really crashes me is the whole stress factor.

My body can't seem to distinguish bad/good stress. Even the most minor stress can easily put me on the bed. For example I recently had a mammogram....I was extremely anxious since years ago I had a benign biopsy so now every year at this time I have major stress....that appt. put me on the couch for 2 days.

I as well push myself to my limit every day even though I know there will be a price to pay. I have tried the pacing and resting which just doesn't work for me at all. As I get older I feel time is slipping by and the more I rest the worse I feel and the more frustrated I get. I also feel that since my symptoms stem from mental exhaustion I just need to know how much is too much for my brain to handle.

I have given up on any supplements etc...as nothing ever helped. I just do as much as I can everyday...somedays its very little but I give it a go. I know many are unable to but as long as I can keep going I will....walking has been a huge saving grace for me. Thankfully I am able to get out and walk everyday....

 

[Keela Too]

Missed your reply earlier @soxfan

It is interesting how some people are affected severely by mental/emotional stimulation but less so by physical exertions. I agree that the mental/emotional stuff strongly affects me too.

Perhaps I have been unlucky, because I have a strong response to physical exertions as well.

I keep trying to wish that away, and test out what I can do, but I can't seem to do more than a certain amount (measured with my Fitbit) without having problems. One day some-one will figure out this illness and find away to control the PEM response.... perhaps we lack some hormone (like insulin for diabetes) that moderates our apparent immune response to over-doing things.

One day we'll get answers. I could live with daily injections to get my life back.