Creating a Surplus

[jeff_w]

We're all aware of "pacing." In my mind, pacing has meant: "Managing activity levels so that PEM does not happen." I've gotten pretty good at pacing over time.

However, yesterday morning, I was on my computer and felt waves of fatigue wash over me, which is my signal to put the computer down and rest. In that moment, I fully realized that I am still pushing myself beyond my energy capabilities. I should not be engaging in activities until waves of intense fatigue wash over me. Even though I always stop when I feel these signs of fatigue, and even though I am very careful to not trigger PEM, I am still using up far too much energy than I should be.

I wondered: What would happen if I stopped using up so much energy? Would I feel different, day-to-day? Would I start healing faster?

These questions brought me to a clear conclusion: I need to change how I'm living so that I stay within my "fatigue threshold." This absolutely means doing less activity, and the thought of that made me extremely angry for a minute or two. Then I looked at my anger from another angle: The fact that I'm angry about having to scale back my life means that I actively value the life that I do have. It also means that I am wanting to live life to the fullest despite being chronically ill.

Valuing one's life and wanting to live life to the fullest are good things! ...and those can be very hard to come by in our situations.

My new goal is to create a "surplus" of energy. This is quite a bit loftier than the goal of eliminating PEM (aka: "not feeling extremely awful for days").

Today is "Day One" of creating a surplus by scaling back activity. This is working well so far. My mind is brighter, my mood is better, and my body feels more alive. I'm going to keep doing this!

I wonder how many of us are doing way too much without realizing it. The problem is that we're doing so much less than we used to, and we're constantly bombarded with the activity levels of "healthy people." So, we might feel that we couldn't possibly be overdoing it. This would be especially true if we've become good at avoiding PEM. But, how much better off would we be if we scaled back further?

 

[Mij]

I am still experimenting with this.

I also want to see if it's beneficial long term. I'm taking short rests by lying down (15-20 mins) when I don't feel the need to. Why wait until we're feeling ugh? By then it's too late. We need that extra energy to heal and if we keep maxing out there is nothing left.

It makes sense to me.

 

[TigerLilea]

Maybe it's because I'm older and wiser now and I've had CFS/ME for 24 years but I have found pacing to be a complete waste of my time as I never felt any better off for doing it. We only get one shot at this life so if you feel up to doing something then do it. We aren't guaranteed a tomorrow so live your life right now today.

I would rather have one really good day even if it means crashing for a few days afterwards because of PEM than to have just a few good minutes every day.

 

[Snowdrop]

I wonder how many of us are doing way too much without realizing it.

@jeff_w

Good luck. I hope that your experiment works out to give you more energy.

There is a problem for some of us as Justy pointed out in another thread: some of us have families and people who we are responsible for and do not have someone to do all the things that need doing so sometimes resting isn't always an option.

But it's definitely worth a try.

 

[MikeJackmin]

I've made a serious effort here, once I discovered how to put a pedometer on my smartphone and a heart rate monitor on my wrist. When you can measure your activity over time, you can really get serious about managing it. I have about two years of data now.

I've had mixed results.

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.

It was good to find what seems to be the optimal path, but bad to learn that my efforts could only go so far.

I'd like to stress that each of us is different and that I started this effort once I had declined to the 'mostly-housbound' level. Perhaps, when I was more able, building a surplus would have been possible.

Just be careful about getting stuck in a downward spiral of inactivity. Push yourself every few months, you might be surprised that it makes you feel better.

 

[Dr.Patient]

I get waves of fatigue wash over me (I call these fatigue attacks, like asthma or panic attacks) for no reason at all. They are not related to my activity levels. Over time, these attacks have become less and less. Though I still get them now 3 years later, they are not as strong or as frequent.

Creating a surplus is a good idea. I read somewhere that you should do about 50% of what you think you can do. The other half will go towards your healing.

 

[TigerLilea]

A few things I noticed when I was pacing and resting a lot was that my brain fog increased considerably and my sleep was much worse.

 

[taniaaust1]

I personally do think this is quite important if you want to start slowly getting better rather then being just stable and avoiding crashing but everyday you just aren't well (most people are just cutting back enough to stop a crash and I personally do think that is a mistake, they will always be below par and struggling where they are at now unless a miracle happens).

If further cut back helps one start to improve (the body needs energy for healing), you will then find you can increase activities more at that point. I found the increase happened without me having to think about it.

 

[Purple]

A few things I noticed when I was pacing and resting a lot was that my brain fog increased considerably and my sleep was much worse.

Interesting. It's exactly the opposite for me. Doing even slightly more = sleeping and insomnia is infinitely worse and more intractable. And brainfog is the first symptom to improve when coming back from a crash.

 

[jeff_w]

A few things I noticed when I was pacing and resting a lot was that my brain fog increased considerably and my sleep was much worse.

Interesting. I'm the opposite. When I pace and rest, my brain fog decreases and I have more energy.

 

[ahmo]

@jeff_w Congrats on your awareness, realization, and intention to go further into this issue. You might find this thread very interesting:
http://forums.phoenixrising.me/inde...ods-and-can-cfs-people-get-really-well.34385/

 

[cmt12]

Maybe it's because I'm older and wiser now and I've had CFS/ME for 24 years but I have found pacing to be a complete waste of my time as I never felt any better off for doing it.

Yep, and the psychological effects that result from pacing will likely take you to an inferior state. You'll become more sensitive to stress and constantly be beating yourself up unnecessarily. I would guess that there is a high correlation of those that are or near bedridden with the belief in the efficacy of pacing.

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. The key, I've found, is to adopt a mindset of resolve, resilience and confidence and not worry about 'crashes' at all.

The sooner that we accept that crashes, or symptom fluctuations, are inevitable and unavoidable, the better. That's much easier said than done for sure. When you wake up and feel worse than the day before, it's hard to just accept and not try to find a reason for it.

 

[ahimsa]

Maybe it's because I'm older and wiser now and I've had CFS/ME for 24 years but I have found pacing to be a complete waste of my time as I never felt any better off for doing it.

This shows how we are all different. I've been sick since 1990. Pacing is the one thing that has always worked for me, at least to some extent. The only other consistent thing that has helped is treating my Orthostatic Intolerance (not a cure but it helps a lot).

Doing even slightly more = sleeping and insomnia is infinitely worse and more intractable

I'm the same way. Resting more means better sleep for me. I always find it strange that this is the reverse of normal people. For most healthy people doing some amount of exercise makes sleep better (as long as it is not too close to bed time).

However, resting to store up extra energy only works a little bit. It's like have a battery that won't hold a charge. So there's a certain amount of extra resting that will help me but then beyond that extra resting doesn't seem to do too much.

I do agree with the general concept of pre-emptive resting, starting to rest before you feel symptoms, planning in rest periods, etc. But I don't always walk the talk. I often "fall off the wagon" and end up doing too much a lot of the time. Plus it's hard to know where the "edge" of my energy envelope is since that relies on so many factors.

PS. I do agree that for an important event it's often worth it to just do it anyway and suffer the crash afterward. Been there, done that.

 

[Gingergrrl]

@jeff_w Sorry to hear about all that you have been going through and if you figure out the secret re: pacing, please let me know!

I had an episode tonight where my HR went into the 160's (this used to occur in my sleep but I was fully awake for this one.) When I get severe autonomic issues like this, I really am not sure if any amount of pacing would make any difference.

It is also incredibly difficult to just rest when you have a family and commitments. But I rest every single day and use a wheelchair every time we go out. Sometimes I feel if I rested anymore I would be bed bound which would make me feel more depressed and more excluded from the tiny amount that I do now.

 

[jeff_w]

@jeff_w Sorry to hear about all that you have been going through and if you figure out the secret re: pacing, please let me know!

Thanks, @Gingergrrl !

I'm actually doing okay, but I've been doing too much, and it's draining me. It's hard for me to scale back, but every time I do, I start to improve.

It is also incredibly difficult to just rest when you have a family and commitments. But I rest every single day and use a wheelchair every time we go out. Sometimes I feel if I rested anymore I would be bed bound which would make me feel more depressed and more excluded from the tiny amount that I do now.

I can imagine that family commitments would make resting much harder. I know what you mean about becoming depressed due to not being able to do what you want to do. It's such a challenge!

 

[alex3619]

Actually in most formal applications and definitions of pacing, and here I deliberately exclude "adaptive pacing therapy", its always been the intention that pacing should be consistently at a rate much less than you can handle, but not so far less that it becomes a problem. Its a bit nebulous for a reason, as how can you tell what you can handle in a fluctuating condition. Avoiding PEM is not the only goal.

The hypothesis is and always has been that unexpended energy might be used to assist recovery and healing.

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. In between is a huge variety of pacing strategies. Its really a spectrum of strategies.

This is also complicated by all the non-activity induced crashes.

Its interesting that we have become aware that the GET in PACE is actually a too highly aggressive pacing strategy, and we know its ineffective ... their own data shows that, despite all the rhetoric.

I pace, but I often push too hard, and when needs must I push then crash in order to cope with an impending crisis that life throws at me from time to time. In other words, it does not have to be pacing or pushcrash, but can be a little flexible. If you don't deal with crises then, even with avoiding effort, you might find yourself in a crash anyway and without fixing the issue.

While its fair to say pacing has been about doing a bit less than you usually can, its often been discussed that one of the reasons for this is you never know where your limit is. By doing less you increase the chances you do not reach that limit. However if you never do a bit more then you never find your limit, and so you may be achieving and experiencing less than you could. Catch 22.

So pacing is not, unlike GET, about steadily incrementing activity, but its also not about pulling back on everything. Its the Goldilocks solution ... not too much, not too little, lets hope its just right.

 

[Valentijn]

Yep, and the psychological effects that result from pacing will likely take you to an inferior state. You'll become more sensitive to stress and constantly be beating yourself up unnecessarily. I would guess that there is a high correlation of those that are or near bedridden with the belief in the efficacy of pacing.

Do you have any evidence to support these statements? It's completely contrary to the experience of pretty much every ME/SEID patient, and very much contradicted by research which documents an objective pathological response to exertion which has nothing to do with deconditioning.

The sooner that we accept that crashes, or symptom fluctuations, are inevitable and unavoidable, the better. That's much easier said than done for sure. When you wake up and feel worse than the day before, it's hard to just accept and not try to find a reason for it.

I'm not sure what your diagnosis is, but most people on this forum have ME/SEID. Exceeding our limitations is a sure-fire way to trigger crashes. It happens over and over, with consistent delays and symptoms every time. Sometimes things get a bit worse or better for no apparent reason, but crashes are pretty predictable.

If you don't experience consistent crashes in response to exertion, then you need to find a new diagnosis. And regardless of your diagnosis, you need to accept that pacing is the only thing which keeps most of us functional at all.

 

[lansbergen]

Yep, and the psychological effects that result from pacing will likely take you to an inferior state. You'll become more sensitive to stress and constantly be beating yourself up unnecessarily. I would guess that there is a high correlation of those that are or near bedridden with the belief in the efficacy of pacing.

Well pacing brought me from dying to where I am now. Pushing took me to the dying state.

 

[Cheshire]

Yep, and the psychological effects that result from pacing will likely take you to an inferior state. You'll become more sensitive to stress and constantly be beating yourself up unnecessarily.

That may pretty well apply to what you experience, but what makes you think you can generalize to others?

 

[WillowJ]

@jeff_w

Good luck. I hope that your experiment works out to give you more energy.

There is a problem for some of us as Justy pointed out in another thread: some of us have families and people who we are responsible for and do not have someone to do all the things that need doing so sometimes resting isn't always an option.

But it's definitely worth a try.

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.