Creating a Surplus

[WillowJ]

Pacing is a natural reaction to our symptoms, so it's counterintuitive and difficult to avoid doing especially because we are constantly reminded that stress exacerbates symptoms.

I find pacing counter-intuitive, personally. I figure there are lots of "natural reactions" and everyone is different. My first reaction was total denial. Didn't help a whit. I then tried *all* the DIY things, from resting to positive thinking to gradual buildup of activity to more denial to different food strategies. (some in combinations that made sense)

The only things that helped were avoiding specific foods that bothered me, and pacing. Didn't usually make me "better", just a bit less worse.

Read a paper concluding there is better mental health in patients who believe pacing will help than in those who believe exercise will help.

 

[lansbergen]

That's one problem and the other is one that Gingerrgirl mentioned; if doing almost nothing already, it's not really practical to do less.

For me pacing is trying to stay within my limits and stop at once when the warniing sign appears.

 

[justy]

I have some sympathy with most of the varying views expressed here. I have also noticed that at times i have to pull right back for months on my level of activity. this can stabilise me for a while, but i feel that once i start to spend too much time doing nothing but laying down i reac a point where i need to do a bit more in order to feel a bit better - and yes i do at this point start to worry too much about whether i should be standing up, trying to cook, shaving my legs etc etc.

Pacing helps for me, but i also find i need a small amount of push at times as well. Doing nothing for months on end makes me feel sad and angry. At other times though my health has been a bit better and i can do more, but then get slammed by an out of the blue infection or downward spiral. This has happened so many times and my condition seems to fluctuate so much that i never know if i am doing too much or not.

At one point i just gave in and went to bed for months - i first felt much worse, then gradually over two years improved and di more, started driving a little on my own and gentle pottering in the garden. Last year that all fell away for no reason when i had severe breathing problems and now i am worse again. Now slowly climbing back a little after a winter of being house and at times bed bound. Have started to do some housework again, and a few activities in one day - but im always terrified that i might be doing too much, or equally depressed at the thought of doing much less again.

One thing i do know is that if i do literally nothing my brain fog clears up - that includes no computer time at all. That is not sustainable and just makes me pretty unhappy. I have always felt for me that i needed to rest, but also to push a little. I am really feeling the deconditioning now after 8 months of being completely inactive and using a wheelchair for all outside trips. The other day i walked for 15 mins slowly into our woodland with my husband and kids for the first time in a year and it was lovely and amazing to do it - i felt fine after - still ill but no worse - but was so scared about whether i should be doing it or not, or whether i could do it again soon, or should i wait?

One of my problems is that when doing an activity like garden work or housework i cant tell its too much until i stop - and then i feel like im going to die. At one point i could push like that all the time and still work in the garden and still spring back, but now my resilience to spring back seems to be lowering all the time.

This fluctuation in symptoms drives me mad and i never know where i am. I also have times where i have a few really much better days a week or so, but always end up back to square one with no obvious trigger most of the time - could be Lyme maybe as that has a cyclical nature i think.

 

[duncan]

Yeah, justy, I can relate. Also, assuming Lyme in our lives makes it just that more complicated in some regards, e.g. the cyclical nature of "attacks." Attacks is the wrong word.

I used to think it was pretty simple. Avoid doing shit that would trigger a crash.

But it's not that simple. The math is becoming more complex. I can do things and not crash. Sometimes I crash and for the life of me I can't figure out what I did to cause it. Also, the time it takes to crash is an increasingly difficult variable to anticipate - not to mention its duration. Emotional issues create greater havoc, faster, than physical. Focusing, as in an intellectual exercise, has its own rate and toll. Physical - I never know what to expect, or how to govern, only that usually there will be a price.

I think it is further complicated by treatment. I feel differently and react differently on mino and tinadazole than on doxi and ceftin or suprax. And it is completely different when on no meds.

Unpredictability rules these days.

 

[Mij]

I'm not sure resting 15-20 minutes when not tired actually gives me more energy, I think it calms my CNS and improves my sleep. All around this is beneficial.

 

[SwanRonson]

I've found that there are two cliffs between which we must navigate - on the one hand, overactivity comes at an obvious cost, but on the other, underactivity comes at a cost, too. Being underactive, in my case, eventually made me just as miserable, but at a lower level of activity.

I've found that a certain, mild level of discomfort seems to represent the optimal path for me. If I strive to lower my activity level below that, the discomfort stays but the deconditioning gets worse.

This is exactly my experience. Taking a nap in the middle of the day makes me feel really lousy. But, so does lack of sleep. Walking 5 miles in a day feels terrible. But, so does sitting at the computer all day and not moving. I find that, according to my iphone, walking a little more than a mile each day keeps things in stasis. Days where I don't hit 1 mile, I feel pretty lousy. But those 1.2 - 1.5 mile days are the best.

 

[Valentijn]

Walking 5 miles in a day feels terrible. But, so does sitting at the computer all day and not moving. I find that, according to my iphone, walking a little more than a mile each day keeps things in stasis. Days where I don't hit 1 mile, I feel pretty lousy. But those 1.2 - 1.5 mile days are the best.

I realize you spend most of your time in the B12 subforums, but this is an ME/SEID forum, and exertion makes us feel worse by definition.

If someone doesn't have ME/SEID and thinks that exercise helps them and rest makes them worse, this isn't the place to talk about it. It's insulting and annoying to the rest of us to imply that it is helpful for us (since this is our forum after all), and may be dangerous if read by a new user who does have ME/SEID.

 

[SwanRonson]

That's because you don't have ME. I realize you spend most of your time in the B12 subforums, the this is an ME/SEID forum

Wow. That was unnecessary. I spent time in the B12 subforums because I'm trying to get methylation right, and because my symptoms started while I was on methylfolate. That has nothing to do with whether I actually have ME. My symptoms fit the new 4 out of 5 diagnostic criteria for CFS, but finding a CFS aware doctor is hard, so I have no diagnosis yet. What I said is no different than what a few others in this thread have said, so I have no idea how it could be construed as dangerous.

That's all I will say about it, so as not to hijack this thread any more. If you want to castigate me some more and give me diagnoses over the internet, do it through a PM and don't try to humiliate me in public please. I've only been sick for about 6 months, and I thought this forum was a place of safety for those of us new to this disease.

 

[SDSue]

When it comes to pacing, one size does NOT fit all. One size doesn't even fit me every day. That's what makes this all so difficult. Just when I think I've hit the target, the target moves. Looking back over the years of illness, I can relate to nearly every post here.

 

[lansbergen]

I've only been sick for about 6 months, and I thought this forum was a place of safety for those of us new to this disease

That might explain it. It took me years to be willing to take drastic activity mesures.

In my opion staying within ones limits is the golden rule and what the limits are can differ.

 

[cmt12]

Those who do not pace are usually in the avoidance group or the push crash group, at least that is how they have come to be called.

Yeah, being in denial of health issues is not good but I feel like that is a non issue for those who find this forum. If you are not in denial, then you will naturally pace to some degree or you will learn quickly since our impulse to avoid pain is so strong.

There is agreement that it's harmful to be on the over-exertion extreme end of the spectrum (in denial), but there doesn't seem to be an acknowledgment

 

[TigerLilea]

Read a paper concluding there is better mental health in patients who believe pacing will help than in those who believe exercise will help.

For me it is the opposite - better mental health with keeping physically active. When I was pacing and resting I found that I would be feeling sorry for myself all of the time.

 

[L'engle]

Exercise may be within the energy envelope of some with ME/SEID. It doesn't mean they don't have it. If the claim is that exercise actually improves the baseline and can lead to a remission of symptoms then that is not compatible with ME/SEID. If the claim is merely that an optimal level of exercise produces no relapse and makes the person feel better in other ways then that is not incompatible. IF a young healthy person can walk a mile a day but 'feels terrible' if they walk five miles then that is still an indication there is a limit on activity, just that it currently has a higher threshold than it does for more severely afflicted people. A healthy young person would not 'feel terrible' from walking 5 miles a day.

I was able to exercise a fair bit for the first 10 years of my illness. I would read about ME/CFS and think, "well that can't be me, I can still walk". I had severe PEM from cognitive and social exertion but assumed that if I could exercise in any capacity I must not have ME. Dangerous. I assumed I wasn't really sick, crashed myself to hell and now some days the laundry room is far away. Before crashing I couldn't exercise to the level of a healthy young person and also couldn't improve my exercise tolerance (or overall health baseline) by continuing a regimen. I would get PEM from exercise above a certain level but just rested my way through it for years without overall worsening. These are the hallmarks of a gradual onset of ME/CFS, and shouldn't be ignored.

I am very pro-pacing. For the severely afflicted no level of exercise is possible. This is not an easy problem. I always feel better with more rest. Activity within my energy envelope can make me feel better in a variety of ways, but does not improve baseline health. Activity above the threshold causes symptoms at a later point, even if the activity feels 'good' during, or a mix of good and bad.

 

[Valentijn]

For me it is the opposite - better mental health with keeping physically active. When I was pacing and resting I found that I would be feeling sorry for myself all of the time.

That's an odd problem to have. I feel a lot better when pacing and resting. Physical activity makes me quite sick.

 

[Gingergrrl]

That's one problem and the other is one that Gingerrgirl mentioned; if doing almost nothing already, it's not really practical to do less.

@WillowJ I have both issues- that I have a family and commitments AND I am already doing so little, that I don't know how it is possible to do less. I have one day per week that my mom comes to help me for the day so on that day, I overdo it physically but I am so appreciative of the help that I feel it is worth it. This issue is a constant battle and with severe dysautonomia, often the symptoms are random and no amount of resting can change them b/c they are so erratic.

That's all I will say about it, so as not to hijack this thread any more. If you want to castigate me some more and give me diagnoses over the internet, do it through a PM and don't try to humiliate me in public please. I've only been sick for about 6 months, and I thought this forum was a place of safety for those of us new to this disease.

Swan, I am sorry you felt that way and I can relate to you in the sense that the entire first year, I had mild ME/CFS but was undiagnosed and did not know it. I continued to work full-time and could have walked a mile at that time (although it would have been difficult for me and I would have felt worse.) That was in 2013. I stopped working end of Feb 2014 and now cannot walk from my front door to our car in the garage without a wheelchair.

I do not know what your diagnosis is BUT if you do have mild ME/CFS, and if your progression is like mine, than pushing yourself to walk could be making you worse. I understood Valentijn's feeling in the sense that often I read about people on PR who not only can walk miles but can run and I think that we do not have the same illness. But then I do not have the cognitive impairment that many people suffer so we are all different.

I am not trying to speak for Val, I just want everyone to feel welcome here who is posting in good faith as I feel you were. I have fallen into the trap of thinking, "well that person doesn't really have ME" and I am trying not to do that as it is not my role to diagnose and leave that between the person and their doctor.

 

[Dr.Patient]

This is exactly my experience. Taking a nap in the middle of the day makes me feel really lousy. But, so does lack of sleep. Walking 5 miles in a day feels terrible. But, so does sitting at the computer all day and not moving. I find that, according to my iphone, walking a little more than a mile each day keeps things in stasis. Days where I don't hit 1 mile, I feel pretty lousy. But those 1.2 - 1.5 mile days are the best.

@L'engle 's post is really good! Explains it very accurately. @SwanRonson you have a higher threshold than most of us, but a lot of us in the early part of our illness were at your level. If you continue walking they way you are now, you will end up like us where even your mailbox seems like 5 miles away. I would suggest finding nonphysical things to not make you feel lousy.

You are lucky that you found this forum early in your illness, and gotten this advice. I wish I had done the same years ago, then I would have not relapsed with jogging.

 

[L'engle]

I think if walking a mile is what makes him feel best he should probably do that, but clearly walking several miles is not good for him. If I had kept to a moderate level of physical activity and also not overdone cognitive exertion I might still be at that level. Stopping exercise that is within one's envelope is probably not needed. Like you Dr. Patient, I kept jogging even though it clearly gave me terrible symptoms. Sorry you had the same experience as me!

 

[Mij]

Early in the illness I did not have cognitive issues for many years, they developed over the years by over exerting myself physically.

 

[Dr.Patient]

I think if walking a mile is what makes him feel best he should probably do that, but clearly walking several miles is not good for him. If I had kept to a moderate level of physical activity and also not overdone cognitive exertion I might still be at that level. Stopping exercise that is within one's envelope is probably not needed. Like you Dr. Patient, I kept jogging even though it clearly gave me terrible symptoms. Sorry you had the same experience as me!

I had no symptoms at all when I was jogging. The symptoms hit me around 3 weeks later.

 

[lansbergen]

If you are not in denial, then you will naturally pace to some degree or you will learn quickly since our impulse to avoid pain is so strong.

Not with this disease. If the system would have worked normal I would have stopped pushing much sooner.