Thou Shalt Pace
Pacing – everyone knows they should do it but how many are really good at it?
“Thou Shalt Pace” is kind of the first commandment for people with chronic fatigue syndrome and fibromyalgia. Nothing trumps pacing.
If you pace you’ll probably feel better, and if you don’t you know you’re going to feel worse. It’s like gravity; you ignore it at your peril but I, at least, ignore it too much.
Both Dr. Lerner and Dr. Chia REQUIRE pacing in their patients on antivirals and immunomodulators. The treatment simply won’t take in people who keeping bashing their bodies around. We, of all people, should be really skilled at pacing…
Oh Yah?
But too often we’re not. Some people’s idea of ‘pacing’ is to push until they crash and then ‘pace’.
The pull of the outside world can be overwhelming. The quote Johannes Starke starts out his Why Is Pacing So Hard? And One Simple Technique to Make It Easy blog, sums that up perfectly.
“I hate pacing!” It didn’t take long after we had begun the discussion section of the San Francisco Chronic Fatigue Syndrome and Fibromyalgia Self Help group meeting until a woman started railing passionately against pacing: “I know I should use pacing, but if I just lived my life in the confinements and limits of my illness, my life would no longer be worth living anyways. Sure, it hurts me not to take breaks, but I believe that this life force in me, that just wants me to be active, is a good thing, and I shouldn’t repress it by pacing myself too much.”
Pacing – being willing to give up something in the short-term for a possible promise of better health later – is difficult. For one thing, you may not know that it’s going to work. For another it’s not always alot of fun (which suggests that finding ways to be happy while not doing much would be a good thing.)
The best pacers are probably those people who know they’re going to relapse really hard if they aren’t careful, but the pull of the outside world sometime becomes too much for them, as well.
Even when the consequences of not pacing are dire, we may still not pace sufficiently
Check out an excerpt from a recent blogger who knows the dire consequences of not pacing, but still pushes too hard at times. In a recent blog on his relapses he said:
Thirdly, what makes them so horrendous is that I play a part in causing them. They usually follow some kind of infection or cold or flu. I know that I need weeks to recover from these, but on occasions in the past I have pushed it, tried to get back to activity too soon, and one day found that I simply couldn’t move any more, that I am exhausted, drained, sleepless, massively anxious, regretful, short of breath. And I know that if I had just taken a little more time, rested more, I would have got through it and out the other side. The knowledge of my responsibility in the relapse is one of the most poisonous aspects of having to live with it.
What Stops You From Pacing?
The question for this Community Reports blog is “What stops you from pacing?” Another way to ask this “What causes you to throw pacing to the winds and just go for it?” or “In what situations does your discipline around pacing break down?”
Clearly illuminating what’s stopping you from pacing is the first step to better pacing, if that’s what you want to do.
Some things that get in the way of my pacing are
- Work – the need to make money
- The dogs – I feel they must get out regularly – this is a big one for me as walking the dogs can have pretty big physical costs at times.
- Boredom – pacing can be really boring so I’d rather not do it
- I’m not entirely sure, despite all the evidence, that it’s going to really pay off…..
- The idea that I should be working all the time I’m able to work (why?????)
- Wiredness, restlessness, arousal – the wired but tired problem
If You’re Not Pacing the Way You Think You Should Be Pacing – What’s Stopping You From Doing That?
Feel free to relate instances when you knew you were going too far, but still did it and then tell us what happened. We’ll make up a report summing up the answers and present it in a week or so…..
Pacing Resources
Blogs
- Heart Rate Monitor Based Exercise Program Improves Heart Functioning in Chronic Fatigue Syndrome (ME/CFS)
- A High-Tech, Low-Cost Path to Better Sleep with ME/CFS and Fibromyalgia
- 7 Ways to Stop the Internet from Aggravating Your Chronic Fatigue Syndrome (ME/CFS) and FM Symptoms
- Can a Smartphone Help People With Chronic Fatigue Syndrome or Fibromyalgia Get Better?
- Crashing! A Chronic Fatigue Syndrome Chronicle
- Conserving Energy and Coping Work in Chronic Fatigue Syndrome Except When They Don’t
Websites
- CFIDS Self-Help – provides online tools and courses on physical and mental pacing
I think I used to be pretty good at Pacing. But of course, with ME/CFS, I had little energy to do anything.Then came the extra energy that I got from high dose vitamin B-1 therapy. It changed my life. Now I want to do everything!
But unfortunately, B-1 didn’t fix the PEM problem. So, I have some life back, but find myself in a big push-crash cycle over and over again. The most interesting thing is that I did not know for certain if I suffered from PEM before vitamin B-1. Sure I suspected it, but I felt terrible on a consistent basis so it was hard to tell. Now, it is all too apparent.
So, I get to figure out pacing all over again. But at least this time, I can go out and be a bit more social. Make some friends, do some art, take some walks, but tennis probably is still not in the equation.
The question is how much to do before it causes a crash. I guess time will tell.
Lynn
I’m now nearing the end of two years with Bruce Campbell’s online pacing courses. After the low cost of the first two the rest are free. This question comes up a lot in the course, along with discussions about how to stick to pacing.
Being in this class keeps me far more vigilant than I was before, even though I was aware that I should pace.
What stops me from pacing? I’m housebound and so tend to overdo with cognitive things on days I’m especially bored. I’m more prone to this if I had a bad sleep the night before or have a bug of some kind. I’ve seen the benefits of sticking to it, though, so my straying is far less than before.
Glad to hear you’re getting good benefits from the program.
The uncomfortableness of boredom or if my body’s hurting ironically when resting can throw me into activity to try and get away from it.
I know I should NOT go to bed after midnight and I probably should go to be long before or I may not sleep well but if I’m watching a good movie then pacing flies out the window…
I totally agree! Even at my sickest, boredom and pain gets me every time!
I have a few go to’s to avoid this, but they probably wouldn’t work for some of us because the stimulations might be too much. For me it’s OK. I am calmed by some of my favorite music (instrumental or instrumental and nature or a calming Hawaii playlist I have) so I will lay with my headphones, playing softly and try to just daydream. I am also a LOST fan and with such a poor memory, I have a great time watching thru all six seasons. Half of my mind knows what’s coming so I don’t get all tense, but the other half doesn’t remember enough that it’s still interesting and keeps my mind entertained and off the pain.
Because my usual energy level is so low, when I do have some energy I want to “do”. Of course my ME causes me to run out of energy very quickly…my body won’t allow me to do much…think it kind of sets its own pace. That being said, I find myself doing less and less each year…I am not living…my days consist of sleeping, watching TV, and, on a good day when I’m able to concentrate, reading. I live a very isolated existence.
I don’t know anything about B-1. Can some good soul out there enlighten me?
Sorry to hear things have declined so much. Here’s the B-1 blog
http://www.cortjohnson.org/blog/2013/07/05/is-simple-relief-from-fibromyalgia-mecfs-found-early-reports-spark-interest/
I’m really pretty disciplined about pacing, but my functioning is at such a low level that sometimes the necessities of life can push me outside my envelope. The cat throws up and I have to clean it up. I need to go grocery shopping. That sort of thing. I try to budget a little energy for such contingencies, but it’s not always possible. Sometimes something like a change in the weather can zap my energy reserves.
I also will intentionally exceed my limit in order to visit with friends every two or three weeks. Nothing wild, just an hour or two of conversation. It wipes me out for at least two or three days afterward, but without that contact the isolation begins to get to me.
And then there are occasional big life events that I decide to attend regardless of the consequences, because they are that important to me. A friend’s 90th birthday party, a wedding, a loved one’s funeral, visiting a dying friend. Those things have taken weeks or months to recover from, but I’m not sorry I chose to expend the energy. There have been other equally important events that I missed because I was too ill to go.
These are quality-of-life questions, but I know that the next level down from where I am is bedridden, and that’s pretty good motivation to try to pace. But when I used the heart monitor and tried to keep it under the aerobic threshold, I discovered that the necessary activities of living, like getting up to go to the bathroom or to get a drink of water or getting dressed, push me over the limit. So all I can do is try to do them in little bits with rest in between.
I totally understand where you are coming from!!.. I am at about the same level, there are things that you cannot avoid just being alive and if there’s not enough energy reserved they take more than we have to spare at the time.
I have just spent 6wks at a retreat in respite care to try and get over that hump because, I too, knew that the next step down was in bed all the time, and didn’t want to go back there after a decade!
I, too, find that often it’s mental activity and emotional demands from being a human being that knock me back down.
As time goes on I’m more and more surprised at how important the emotional component is. I think its the result of having a really whacked out stress response system.
I found Pris’s comments about pacing and Bruce Cambell’s classes very enlightening. I think it’s very easy to talk about pacing when, like he, at your worst you’re talking about being limited to part time work and 20 minute walks.
Otherwise to me the concept of “pacing” is in essence two fold- it places the “blame” of one not getting better on the patient, and it places the concept of “getting better” somewhere in another realm of medicine. Healing, getting better, recovery- whatever you phrase it- in Medical terms means the return to normal, from Ill health- not something any of us are familiar with.
For me, as a veterinarian, I always think of my clients, how many of them would want to put their animals to “sleep” if they lived the life most of us live. Why wouldn’t it be easy to fall outside of the pacing parameters and want a little more life on those days when you’ve got the energy? Haven’t we all done it and gotten away with it?
As I spiral downward I feel better in my little envelope, but get no sense that I’m going to get any long term improvement. How long do I have before my heart gives out? What is the purpose of life if not to live?
That really resonates with me. As someone else I know says, sick people are expected to be perfect in ways that are not expected of healthy people and in many ways this is an unreasonable exception. Yes, there are some things we can do to improve our lives and we should do this to whatever extent is reasonable given our other priorities, but no, it’s not reasonable to expect us to spend 100% of our time and energy and spend a lot of money and give up everything meaningful to us, in the effort to get better. We should be allowed to decide on our own how to balance our priorities just the same as anyone else.
Agreed Janelle. It’s more than a little unfair that you’re asked to do so much more when you’re sick. You’d think you should just be able to pamper and for some disorders I think you can. With ME/CFS though you often have to be more disciplined 🙂
Thanks Cort. I agree with that.
The other problem is that I tend to get depressed if I’m not doing something productive. So that’s one of the priorities that I need to work in: doing something, even if it’s only a little bit of something here and there.
We’re may be happiest as humans, I think when we’re focused and productive.
“Haven’t we all done it and got away with it” resonates with me! The illness is predictable in that, yes, overdoing things causes PEM, a crash etc. But how much I can do before I reach that point is not always predictable. There are so many factors at play all the time: how well I’ve slept lately, what my emotional stress level is, what the temperature outside is, how much sensory stimulation is involved, what I’ve eaten lately, how well hydrated I am, what my pain levels are to start with, etc etc — it’s pretty hard to keep track of the vast span of factors at play. So sometimes, I can “get away with” pushing a little bit. Other times, I pay a big price. This makes it tempting to push to do things one really needs to do, or wants to do, because maybe this is the time one can get away with it, and briefly experience life again like a healthy person. Sometimes, the desire to have that brief experience of feeling healthy outweighs my better judgement, and I ‘go for it’ even though I then usually pay the price. But not every single time. That’s what makes pacing hard to consistently follow.
One of my biggest challenges with pacing is the adrenalin boost I get when I get involved in an activity or go to an event. It’s really hard to not “live it up” when I kick into overdrive. I remember the first time the light bulb went off in my head about PEM. I had been sick for about a year, (didn’t yet know why) and for some reason ended up volunteering to help at a school field day. I had a great time with the kids and was very active, running and encouraging and thinking what fun I was having. I have a Bachelors degree in elementary ed and it felt really good to be with kids again. (besides my own) The walk home began with me telling myself that I really did just need to get out more because I felt great. The walk ended with me wondering if I would actually make it all the way to my house. I also knew that I was so wired that I wouldn’t be able to sleep that night even though I was so “tired” I was going to have to go straight to bed. That was 17 years ago, and I’m still trying to learn how to pace myself better. Like the previous poster -ixchelkali- I am pretty much housebound and don’t want to take the next step downward to being bed bound. I’ve been there before and it is a pretty good motivation to be good about pacing myself now.
One of the other challenges I face with pacing is that sometimes I can get away with pushing my energy envelope more that others. Other times I just get walloped out of the blue even though I’ve been carefully pacing myself. Then it’s easy to think that if I’m going to get sick anyway I might as well go for it. That never turns out well though. It’s kind of strange to not know anything that will “cure” me, but to know that with a couple of misspent days I could totally ruin my health. Sometimes I feel so fragile that I think I could literally push myself to death. The “real” me wants to get up and start running and go all day. Sigh . . . .
I loved your comments Darlene. You really protrayed the problems of pacing very well for me. Thanks 🙂
This resonated, for sure.
“That was 17 years ago, and I’m still trying to learn how to pace myself better.”
I’m actually a little less worried about pacing and more ‘worried’ or focused on being happier. I wonder if that’s more important in the long run.
I really like that comment, Cort.. “I’m actually a little less worried about pacing and more ‘worried’ or focused on being happier. ”
Thank you… This is so true , I think, for all of us, for no matter how much “pacing” we do, we are still sick!
Thanks Jeanie,
Great point. I think I would rather be happy and ill than unhappy and healthy :). Besides I know I’m healthier when I’m happy. 🙂
Thanks for the thoughts. I know that happy is where it’s at, but it never hurts to get a reminder! I have been able get to the point that I am able to enjoy my life. It’s a much smaller one than I had assumed I would have, but I think that I appreciate the good things a bit more than I would have otherwise. I’d rather be healthy and working hard to appreciate my life :), but still I love Cort’s comment –
“I think I would rather be happy and ill than unhappy and healthy 🙂 . Besides I know I’m healthier when I’m happy. :)”
It was 2.5 years ago that I was first tested by an exercise physiologist who helps patients with ME/CFS learn to pace. It really wasn’t until about 6 months ago that I finally began learning how well it can impact my life.
Just like looking for a “cure”, I had to get past the idea that this was going to “fix” something and get into the mindset that this would help me embrace my life and live it is as well as I can.
I am not bed ridden, but I am mostly housebound. One outing in a week (like a visit to the doctor) can land me on the couch for the next week. I live in a very small house, I get myself out of bed and into the recliner. I do very very small things around the house – in very short sections based on my pacing.
5 minutes up 5 minutes down does NOT work for me. I had to change my definition of “exercise”. I have to wear my heart rate monitor or I cause a crash before I realize what’s happening. I have not been able to increase my “exercise” or increase my target heart rate.
But, it has made me so much better equipped to LIVE within the boundaries my illness creates for me.
You can read my simple description of my pacing here on my blog: http://thecreatorspalette.com/2013/04/29/pacing/
However, you can also read about my choice to have some fun knowing that it will cost me a week(s) of recovery here: http://thecreatorspalette.com/2013/09/09/having-fun-is-serious-stuff/
One of the ways I’ve learned to pace, is by cutting activities into tiny tiny pieces. You can read about one here that I titled “The Dreaded Shower”. It took me 11 years to embrace this idea: http://thecreatorspalette.com/2013/08/25/m-e-cfs-and-the-dreaded-shower/
I hope the sharing I did in the blogs posts helps someone else think about their own situations and environment and are able to pace it so that they can enjoy it a little more like I’ve learned to do this year.
A tough realization but a golden one. Acceptance is not giving up but it is embracing where you are…
I had to get past the idea that this was going to “fix” something and get into the mindset that this would help me embrace my life and live it is as well as I can.
Thanks for sharing your blog links. I look forward to reading them.
Family events, those are the big issue for me.
Big ones, like my nieces and nephews now starting to marry, buy their own homes, college graduations, major birthdays of my siblings.
Missing those is missing it all, but they wipe me out for months not just weeks. And then I still need to get my food, pay my bills, and other essentials of life, which in their turn wipe me out.
My experiments with the heart rate monitor seem to show that unless I am in bed, I am over my limit, so that has been very discouraging.
My main desire is to regain a bit of function, but I do not know how to do it without a many-month collapse. Which is to say, I do not know how to do it.
I can get very bad without doing anything, so not all my problems arise from the post exertional response. The notion that I make myself sick by living just a little bit, that does not go down well, either.
One sister-in-law has early onset Alzheimer’s disease. All my siblings, their spouses and their children gather each year for the walks to raise awareness and funds. I stay home. I cannot do walks for anyone. It feels mean of me.
In my healthy life so long ago, I was involved with my extended family. If I am always absent, I may as well be dead! The occasional e-mail is not enough life.
If pacing always worked in a set amount of time, for me to stay at a level of fucntion, that would make it more alluring. But my life with M.E. has been a slow but steady decline in function.
Sarah
Sarah, I just had to respond so you know you are heard and not alone in the feelings. Family gatherings are very difficult for me too. My children are all young adults, and I LOVE seeing them, but all getting together always comes with a physical price.
I use my HR monitor a lot as I said in my comment and blog post above. But I have many days that I’m like you – it’s not worth wearing my monitor because anything I do sets it off. I do have POTS so it goes off when I first stand up, but I’m talking days that I can’t move without it going off. Do you have POTS?
Also, I can not think of pacing as a fix. I am like you, bad days are NOT just based on PEM or doing too much. They often come and go as they please. I had to realize it’s only influencing my flares – I’m not controlling them.
I hope your family begins to understand and I hope you can find some “living” in this life we’ve been dealt. Hugs,
Melanie
That’s rough..You’re between a rock and a hard place. I hope things turn around for you, Sarah….
Work. I work part-time, sporadically, filling in at an outpatient surgery center (I’m an anesthesiologist). Can be 12 days in a month or nothing for months. But when it does happen, I have no control over the hours and stress level. One time I worked 54 hours in 4 days. I can hardly complain, given that I could live well working 4 days a month (if only I could arrange to have work in a regular fashion).
My dream: a part-time position where I can work 8 hours a day 2-3 days per week.
The catch-22: looking for work is the most emotionally stressful thing I can do. Worse than working 13 hour days on my feet all day!
Work is good for my self-esteem, takes my mind off of pain and malaise, stimulates my mind, and provides social contact. In the aftermath, though, I’m nearly bedridden for several days.
Great topic!
To pace or not to pace…
It is a tough one for me. When I’m pacing I’m not living , and when I’m crashing I’m not living. Pacing is boring indeed, and crashing is even worse. So I pace and pace and pace. But the minute I try to enjoy the fruits of my pacing labour, I crash again. So it is as though pacing for me ends up being more about preventing crashes than it is about living.
That is a strange life…
Will it be effective in the long run? I’m asking myself the same question. My gut feeling is no. Pacing today will prevent today’s crash, but I doubt that one day the fundamental problem – being predisposed to crashes – will ever go away. Once you’ve “came down”, it’s done…
So when do I say “the hell with pacing”? I don’t anymore. I used to. I used to say “que sera sera” and just enjoy this or that moment. But too many crashes got the better of me. Fear of ever stronger and frequent crashes got me.
Today if I fail at pacing (it still happens all the time), I wish it were out of an undying urge to live that refuses my condition. Rather, it happens because I still misjudge how little it takes to trigger a crash, or differently put, to break right through my anaerobic threshold… Last time I crashed was not because I took a deliberate risk, it is because I had no idea that even THAT was gonna suffice…
My pacing breaks down whenever I overestimate my body. Even if I set myself on never doing that mistake again, I still do it all the time (maybe I should consider the possibility that I unconsciously want to!)
Congratulations for sharing this.
Most of all of my flares and relapses are self-caused. Only flu and colds are outside of my control.
I too feel that I have done myself irretrievable damage each time I relapse and have to be very careful for some weeks and months afterwards.
And being careful is very hard as my body doesn’t talk to me during these very slow recovery periods. Whilst I have personal rules and various tools to help me pace, I find it extremely difficult during this period.
My perception is that I somehow activate adrenaline and fail to be able to easily mindful, listen to my body and fail to continue to consistently pace. So I activate some sort of Post Exertion Malaise. It is easy then to rest and pace and after a considerable days reach some sort of level of feeling I can again to be active.
But! The adrenaline continues to operate on a really low level, but enough to completely mute my body’s signals and enough to convince me that I can keep going and feel better than I really am.
After 11 years of this illness, I never, ever want to make a conscious decision to err on the side of risk, but when life happens or something really worthwhile is on offer, I can slip back into “normal/healthy mode”.
Our body’s continued attempts to reach homeostasis may help to produce this adrenaline and mask or mute body signals. I use a free computer app at Cozi.com to remind me twice a day that “Feeling Good is VERY Dangerous”.
I appreciate the Dr. Charles Lapp comment that we can push ourselves beyond the reach of modern medicine, and I find that incredibly scary. It is one of my major incentives to do my best to pace the best I can. The other primary incentive is that I hate wasting my life in recovery mode which for me is only a half life.
I agree with Pris, and follow Bruce Campbell’s courses and strictures with very good effect. He too was once nearly bed bound I understand and has recovered to the point of hiking 17 miles in a day and running his wonderful courses for many years. He shares an amazing amount of free information on his website, and a whole free self-treatment course he devised with Dr. Charles Lapp.
Nearly the most important things I have learned on Bruce Campbell’s course is how much my thoughts and attitudes can work with me or against me when dealing with this dreadful illness. I can’t beat it but I certainly can ameliorate the worst of the affects by stealth, and by learning to outsmart my desperate need to be normal and healthy, and thus working outside my “energy envelopes”. Recognizing that I had multiple envelopes and that the time of day and amount of pacing I used made a great deal of difference to my ability to understand my illness and my improvement.
With the insights gained from his courses and my fellow students, and with careful personal rules and pacing I have been able to go from housebound to back at college part time and riding a friend’s horse twice a week. And then I go flu and then a cold working with your children. It has taken me nearly 5 months to feeling well enough to consider riding again.
Each of us has their own unique set of circumstances and own unique illness. I wish you all the best of luck in using pacing to avoid relapses.
Hi Suella – That comment from Dr. Lapp sure is both precious advice and a chilling thought indeed…Can you tell me where it’s from?
Christian,
I was paraphrasing the comment made in http://www.cfidsselfhelp.org/library/important-things-to-remember
Here is the exact quote:
“I have had many patients who could not accept CFS, so they would push until they crashed, exercise beyond limits, try to keep up their activities, and pretend that they weren’t limited. As a result, they all got sicker and sicker. Many have never recovered. They crossed that invisible line beyond which modern medicine can no longer help, and they have remained broken and miserable as a result.”
This advice has helped me to try to use all my rules and tools ( folding seat, planner, heart monitor, timer etc.) which were developed with the course that Bruce Campbell and Dr. Lapp collaborated on. I’m still learning how I influence my energy levels and why I can still advertently, or inadvertently, go outside my personal energy envelopes.
I feel each of us are different and have a very differing illnesses, and symptoms. I paced my energy and that of my horse as part of my endurance riding, before becoming ill with CFS/ME,but it was a very different sort of energy that I was using then.
We need to praise ourselves each time we use appropriate rest intervals, or plan weekly tasks so that they are done in easy steps. I know that I can do most things for at least 5 minutes with care, so use my timer to remind me to take a break. Short rests taken lying flat with eyes closed are particularly refreshing for me and seem to reset something in my body.
Chritian, I hope you find the article and the website useful.
Suella
Not only do I find the article and website useful, but also your comment.
Thanks.
Great article for tonight as I torment myself for not going to my son’s football game…well, I couldn’t…because I drove myself into the ground this past week after being wiped out from sitting in the bleachers for 3 hours last week…
My specific trouble with pacing is that I undergo the childish notion that on a “good” day, I can catch up on all the stuff I didn’t get done for the past 2 years. I’m just starting to come to grips with the fact that is not possible…ugh!
Indeed, the mind is strong but the body is weak. It’s tough letting go of all that stuff. It’s brutal – there’s no other word for it.
HI,
For me it’s the “never knowing” exactly where I am at..
I can sometimes feel able to do more.. and not realise until a couple days later, or in some cases (eg. when I was at a much more able level of working part time and walking a few times a week) I must of been at my absolute optimum without being aware of it and, looking back I can see the life events and emotional/mental triggers that contributed to my huge crash..
but only in the rear vision mirror.. I couldn’t tell at the time that the incremental damage was building to the level that my life has been, for over a year at dead stop and teetering just over the hump of being back in bed (as I was 10yrs ago)
After 6wks of respite care in a retreat I have barely shown any progress.. very disappointing to say the least!
For me pacing, now, is doing very little at all, gone are the walks, visits with those I love,phonecalls or time with others exhausts me, I can do a short drive to local shop a couple times a week, for that I am blessed!
I am trying to focus on what I can find to bring joy to my days in this pretty much housebound state.. terrified to venture out much at all because of the consequences
I haven’t found a pace yet that allows me to function every day, but I have found that restIng ahead of big events helps. I try to allow at least two “down days” in any week, more often three or four.
I agree with everyone who has said that they want to get up and do as soon as they have any energy at all.
I can identify with the above experiences.
Something similar to Lynn as well, but in my case it is Vit B12 that I am supplementing at high dosage (lab test showed I was deficient). It gave me a significant amount of energy (compared to just about none) so now I am having to learn how to manage that without the crash & burn. I want to do everything plus catch up all I missed from the last years – impossible, I know.
The pacing is terrible! If I feel “good” I want to do something (just live!) because I am afraid I might not have another “good” day. The pacing results in utter boredom, isolation & loneliness and the “wired but tired” is frustrating.
I too would like to know more about Vit B1 – I haven’t been tested for that yet, but maybe I should ask for it.
Thanks Cort, for this excellent website & the newsletters.
Glad you have a new level you have to adjust too Alex. I think ‘pacing’ as hard as it is is probably a good idea as your body gets stronger. 🙂 Good luck!
I live alone – pacing is not possible. No-one else will make a meal, provide clean clothes, buy food, etc., I have to do everything myself; there is no alternative.
For the single, lonely sufferers, pacing is nothing more than a wildly impractical theory.
Agreed… If you’re ill enough and alone, the necessities of life can trump any idea of pacing…there’s no way around that.
I’m often quite good at pacing – I am pretty much house-bound. But I find there are two types of ways in which it can all go wrong. Firstly there is the obvious one – the one off big activity. I don’t mind that so much, as I’ve normally chosen to do something fun – have a friend round for dinner etc. But i also find that sustained activity over a number of weeks, that at the time seems to be ok, will often lead to a crash. Recently I was writing a dissertation for my masters degree. I was doing about 2 hours on the computer per day, split into 30min sessions and resting lots in between. It seemed ok for about 4 weeks, then I started feeling myself crash, and after I submitted, I did finally crash quite badly.
I’ve had the same when trying to build up how far I can walk – it seems fine for a while, then it all comes to a sticky end. This is why GET is so dangerous – you don’t feel the effects immediately if you are only just over your limit. We somehow have an amazing capacity for ‘pushing through it’. This is why pacing is so hard for me.
The other reason is practicalities. I *should* for instance split up activities like emptying the dishwasher. But that means walking from the kitchen to the lounge twice rather than once. There really is no way to win this one!
I find the energy envelope description helpful – because it takes into account that each day is different. Try and stick to just below what you feel you can do on that day.
Oh boy does this ring true.
I use a Fit Bit to count steps (I average only 800 a day). I take breaks in activity, I try to keep my HR low.
Yet I can’t stop the slide. Even after resting through a flare, I can’t return to the previous “normal”. Month on month I’m dropping back.
This must be me:
“The best pacers are probably those people who know they’re going to relapse really hard if they aren’t careful, but the pull of the outside world sometime becomes too much for them, as well.”
Except it’s obvious my pacing still isn’t good enough.
And I totally relate to the dog thing. I do agility with my dog (from a mobility scooter) and sadly I think I’m going to have to stop.
Today is the first day I’ve stayed at home and let hubby take our daughter to the agility show. I knew if I went I would be too tempted to take up my entries.
What I fear most about giving up agility is the pity from good friends and family, who have been so supportive and encouraging of me using a scooter to run my dog.
I hope you can stop the slide, Sally. I think sometimes you can do alot of things right and the slide still continues. I have a friend who slid and slid and eventually found out that it was a virus…Something is going on and I wish you the best of luck in finding out it is…..Good luck!
Thank you Cort. Perhaps some more investigations…. Ho hum.
Attending to my severely and most severely affected daughters stops me from pacing. I know many families with the same problems. The moderately affected mothers are not able to do pacing. There is always too much work to do – so there is no possibility to rest. And over the years our condition worsens.
There is only very short timeout left. Then I like to do some intellectual activity like reading or writing. If I would be coerced to abandon these favorite occupation I would go mad.
Katherine , do both your daughters have ME too ? Is it transmissible ?
There’s really no evidence that ME is transmissible; if it was it really should be immediately evident as it was with HIV.
Some evidence suggests there’s a strong genetic component, though, and that would make sense given Katherine’s daughters situation.
I think we are all striving to feel that we have a life to live,and that out life is not completely defined by this illness. I have had CFS since 1980, and , still, I am lousy at pacing.
My husband works hard; is he then expected to come home after working usually a 12 to 14 hour day and then start in on the housework, cleaning , cooking, etc? I feel that I want to be a contributing partner in our marriage, and so , I do most of what needs to be done around the house. Now, that takes its toll.
And I flew to Calif. last weekend to be at the hospital where my first grandaughter was being born. Yes, the trip cost me and I came home almost crippled. BUT, if I just didn’t push through, I would miss out on the most precious and lovely gifts that life offers.
And many days, I wake up early, I feel pretty good, but if it is one of those days, YOU know, one of THOSE, even if I haven’t done much at all, I can feel the scratchy throat coming on, my eyes begin to feel drained, and I start to barely be able to walk. And, what I call THE HAND is upon me once again. Even my voice becomes very horse and deep.
So, pacing or not,and it is so worth while, I get that, but living, inspite of this thing we call CFS, is to be taken up and lived as best we can, and if we crash, when we crash, oh well, we are trying to live as full as we can with the knowledge that so much of what we want to do, we have to give up, we have to surrender.
People who are not sick with CFS cannot ,do not, understand how we have to try to pace, yet , we yearn to live. We get blamed for not pacing and then crashing, yet are still expected to help out, to be there, to not make things too hard on others. We are in a weird conundrum.. “damned if we do, damned if we don’t.”
What is always helpful, Cort, is that through this site that you run, those of us who are sick, read about all of us out there who are going through this same thing, and it helps to know we are not so alone.
Those of us who got sick in the early 80’s, know what feeling truly alone with this still misunderstood and maligned illness felt like. It is truly a new day for us to see the research going on, and people standing up and saying, “Yes, these people truly are sick. Pay attention and help them”.. Now, that makes life worth living.
Good question, I say to myself as I lie in bed with yet another major relapse. Why DON’T I pace better? Answers so far….
1) because then I’d have to admit I’m sick (having just gotten this diagnosis 9 month ago) with something that exercise isn’t going to cure. Prior to this I had been diagnosed with POTS/OI/NMH where vigorous exercise was encouraged.
2) because I’ve always been all about NOT limiting myself. I was always one who felt I could add endlessly more activities, jobs, volunteer positions, children, etc into my life and still keep going. It was ALL possible if you just didn’t limit yourself by saying the word “CAN’T!”. That was/still is a 4-letter word in my vocabulary.
3) I still am fighting the mentality of “if you can, you should”. Too many years of working in rehab to switch my thinking this quickly. Part/most of me still thinks I’ll get worse by not doing rather than doing…even having done the 2 day CPET and seeing the results on paper. Old habits die hard, ya know???
4) I don’t want to voluntarily miss out on the parts of life that I would have to give up in order to pace. Like Jeanie said above, life is to be lived, as we are able, to our fullest.
5) stupid as it sounds, somehow when I crash physically, it’s easier for my family to see and accept that I can’t do something versus if I just set arbitrary limits and come off sounding like a high maintenance princess.
So far the concept of artificially imposing limits on activity has just not worked for me. When I feel better, I just get up and do things. The idea of not doing things doesn’t even cross my mind, until I start to feel bad and then I remember, oh yeah….I probably shouldn’t have done all that.
As I’m lying here now, I am willing to do just about anything to get better, even if it means pacing. Once I’m back on my feet…we’ll see how long that lasts. 🙂
I loved this post. It was SO hard for me to get all the pre-CFS snippets out of my head that are less than useful now. How about:
-When the going gets tough the tough get going
-Always give 110%
-If you believe you can achieve
-No pain, no gain
-Keep working hard and you can get anything you want
Well, that’s just a sample.
Good luck with pacing once you feel better!
Hi everyone, I just discovered this page yesterday and am attracted to the topic. I have had FMS and CMP for over 30 years. I’ve only noticed symptoms of CFS for about 10 years or less. I am in the final stages of writing a 12 month curriculum on FMS, CFS/ME, and CMP. And while I address personal responsibility and taking part in our own care, I find myself far from it some days.
I was just telling my husband that after 30 years of making the decisions of to “go” or to “stay”, I feel the heights of frustration. How many times did I not go, only to discover a few hours later my energy has returned. And how many times did I go, only to regret it the next few days. It is impossible to hit the mark on this, because our bodies are so unpredictable. I might “go” and be fine for the short run, which is so freeing I want to keep up the pace. But sometimes pushing it, starts slow but it is steady and will lead to the relapse.
Someone asked in a Pain Support Group that I attend, “Do you ever feel betrayed by your body? Do you ever feel it is/has let you down?” My feeling was mixed. I never really blame my body. In fact when I finally realize I’m in too much pain to go on, I am actually relieved because the decision is obvious. I find the days when the pain in less, it’s more difficult to tell if I’m over-doing. The stress of “getting it right” is exhausting. And truthfully, it’s an impossible goal. Sometimes, “close enough” is “good enough”.
My emotional issues sometimes take as big a toll on me as the physical ones. Depression can flatten me as quickly as 3 days of over-doing it. So, trying to over come depression is also a chore in this fight.
My last huge relapse was last year. I had been working on writing a support group and at the end of two years, my helpers would not commit. I tried to go on alone, but it wasn’t going to happen and I could feel it coming with every movement I made. To make matters worse, I am a binge eater when I’m feeling disappointed or that I failed. I ate my way into a serious fungal infection that attacked my CNS. It took me 7 weeks just to walk and venture out. And then of course, that week I broke my ankle. Great! new pain to live with.
I’m still struggling today, but I want to leave something when I am gone. I have no children, I wasn’t able to work most of my life, and I too have been housebound for about 7 years. I try to get out 3 times a week. But, I don’t meet that goal very often. I hope the Support Group Curriculum is good enough to make a difference in the lives of others. I think it will be ready by January. I pray God will let me help the suffering in some small way.
Bless all of you that are suffering. I always wish there was a way we could all get together to get an idea of how many of us are out there. We’d feel stronger to know we are not alone.
Donna
Nicely put Donna
It is so hard to know, apart from when it is obvious, because I had to do something and knew I would pay for it, when I will wake up and feel its one of those days. Some days I will feel alert and have more energy, others I don’t and, in spite of trying to look at all the possible causes, apart from the obvious (i.e.. that I had to sit through my grandchild’s calisthenics concert, or my son was in conflict with his wife), I still can’t properly pace myself. As a clinical psychologist I only work a few hours now, as I’m retired from my full-time academic job, but there are some weeks I just don’t feel like going. And I feel a hypocrite, because I’m telling my chronic pain people to try and stay within their energy envelope! My last couple of years of full time work I was really pushing myself to keep going. I have osteo as well, and that can be enough to start a cascade of symptoms; fatigue and overall pain. So, that’s my reason; the unpredictability of my symptoms!
Back in July I tried taking high dose Vitamin B1 and the results appeared to be miraculous. I went from only managing to walk 1500-1700 steps a day to taking over 12,000 steps a day. I went from functioning at about 30% of the level of someone of my age to functioning at about 75%. Everyone warned me that I may have been pushing things too much, but I felt so well I found it hard to pull back. Besides that I had taken hings easy before during a remission and still crashed, only to be left with dealing with the regret of not making the most of my good health.
I was feeling so well I was even considering the possibility of returning to work, even if only part-time. I thought perhaps my ME/CFS diagnosis was wrong and that I may have only had a B1 deficiency that had been missed. I was wrong!
After just over a month of near normal good health I crashed. Now the high dose B1 doesn’t make any difference at all. It may be that my ‘remission’ was coincidental and had nothing to do with the B1 as I’ve had short remissions before, although not of the same quality as this one, or it may be I just pushed myself to a point where even the high dose B1 stopped working. I really don’t have any answers to it.
The crash has yet to abate. In fact I’m struggling to find a level I can operate at without making myself worse and I’m sure I’m still functioning outside of my energy envelope. Having gone from functioning at near normality back to still struggling to function, even at the level I was at before the remission, is really difficult. I know that I’m now worse than I was before the remission. This has been the case after every remission I’ve had and each year I appear to be able to do less until the next remission comes along. The problem is when I have a remission again I risk everything and live for a while, crash and end up a little worse again.
I find pacing really frustrating. It isn’t helped by the fact I don’t have a very organized type of personality. I’ve never made lists of things to do or done lots of advanced planning. I like spontaneity and everything within me rebels against rigidity. But this illness is very unforgiving. I have a feeling that people who do best with pacing tend to be people who love routine, lists and planning their days, where as those of us who naturally rebel against such constraints really struggle. That’s not to say we can’t change our attitudes, it’s just that much harder to get started after years of not doing it.
I know if I do less I generally feel better, but like others have said, I get bored. There is so little left that I can do where there isn’t a payback, in fact that’s the problem, everything I do has to be accounted for. Any activity can cause major problems if pursued for too long. And doing one activity will mean having to drop another.
The other problem I’ve had with pacing is it doesn’t always work. This illness is so unpredictable. You can pace well and yet still crash. What is within your envelope one day may be over it the next this makes planning things difficult and I guess why pacing is really a ongoing learning experience. Few of us ever become experts at it.
This illness is sooooo complex. Sorry to hear the B-1 didn’t work out. Usually with things that work for me – they work for time – then I fall apart (with very different symptoms than usual – at which point I’m actually worse than when I started. Then I get over that and I’m probably back near baseline.
That was a remarkable boost, though – up to 12,000 steps a day. Wow….The B-1 must have filled some need. Since my worst relapses come after things that work – that boost my energy – I’ve wondered if a) the fatigue really is protective or b) there’s some problem in the energy production system that is dumping junk into my system.
It’s bizarre that you can get alot better, then crash and then not have it work at all.
I have heard that before…
Maybe you should completely lay off the B-1?.
The things that hold me back from pacing are very simple. I am on my own, and I have a very severe form of the disease, leaving me bedridden much of the time. I am responsible for every item of food that enters my mouth, every time I wash myself, every brushing of teeth, every bill paid. I also have a dog – a trade-off, as it is hard to care for him now that I am so ill, but he is also my only social interaction. He makes a really good unofficial service dog because he’s incredibly smart, which helps him to stay busy and feel useful.
I am in the middle of major life transitions. I had to leave an abusive spouse while bedridden. There was no choice but to force myself through it. I had to move several times in two years due to lack of funds. I am now planning to move to a more permanent and stable place, and of course such a thing is on a deadline – you can’t really pace a move, especially when you are by yourself with no one to help you.
When my life settles down and there is not so much change going on, pacing will be the rule. But, there will be a number of exceptions. Being this sick, after having been an extremely active person, means that I spend nearly all of my time lying down thinking about the things I love to do, and then remembering I can’t do things like that anymore. I do actually forget, even still, quite often. I have adjusted to this life. But, I am not comfortable not making new memories. Every day is the same, staring at the walls, sometimes not even leaving bed the whole day, when “going to bed” simply constitutes turning off the light and laying back down where I’ve been all day. “Getting up” means opening my eyes and seeing it’s light out, and then resting them because using them hurts. If I don’t push way past my physical abilities, I will never see another living soul, never have an experience, never make new memories or have all that much to look forward to. My dog will also never see anything close to the exciting things he used to see when I was healthy.
So, I make the conscious choice – often once every 4-6 weeks, that if I can walk I will leave the house and do something “major” – as in, something I would have called “minor” when I was healthy. I meet new people, go to an event, find something that involves sitting or a short period of time so I can pretend I’m not sick and try to pass for normal for a little bit. I come home very sick, and then get worse and worry if I might have committed suicide by accident for a week or two. And then, I look at the pictures I took, I think about the new experiences, and I feel so invigorated even though I have a major crash for about a month until the next one, that I am all the more driven to get better, and feel all the more positive about my situation. One can’t deny, these excursions are becoming bigger and getting easier than they were a year ago. So that makes me feel loads of good, even while feeling loads of terrible physically. It keeps me sane, and feeling very positive. It makes me feel very, very happy. And being a responsible patient doesn’t bring that kind of joy, the element that makes the patient want to continue to live and fight for health. So I need some of both.
I have planned for the past few years for this last move, to a place that allows me to go out easily, have fun with little effort, meet many people who are nice and will want to check on me when I can’t get out of bed, in a climate that will tax my body the least. So all this pushing myself too hard will soon have paid off, in a lifestyle that allows for pacing as maintenance, as the rule rather than the exception.
If you’re lucky enough to make it through all of it, pushing past the limits in the short term can make pacing possible for the long run, meaning a much-elevated standard of living. That’s necessary for people who are on their own. But, the risk is great, that while pushing so hard accidents are far more frequent – falling down the stairs, fainting and hitting your head, cutting off your hand when trying to cook, tripping and knocking a pot of boiling water onto your body, knocking over glass and having a million shards scatter over a floor you are too ill to pick up for a week. Sometimes, just living is exciting enough that outdoor adventures are not needed! I feel like Indian Jones in my own house, and that also helps to fight the boredom. 🙂
So beautifully put Sunshine – thanks 🙂
I’ve always been good at pacing because my illness of 19 years has been steady day to day so I pretty much know just where that red line is and it’s just not worth it to cross it. That said, I push it occasionally, and seem to get away with more if it’s something I need to do as opposed to something I just want to do. Do other people experience this? For example, I had a sudden downturn in my ME due to a virus, and decided to visit a ME/CFS doc which I hadn’t done in 9 years. I flew across the country to see Dr. Klimas, rested for a day, and then had my appointment. In spite of worries I would crash, all of this (with the help of a wheelchair) was no problem. I had another rest day, and then got pushed in my chair for about an hour along a paved path at the Everglades. MAJOR CRASH resulted. It was kind of worth it as the wildlife was fabulous, but still!
1) children – especially when they are in the ER, or bleeding, but also when they need food, or help with their homework
2) produce that’s about to rot
@Amanda and @Cort:
Recently I heard about the theory of a foremost virulogist. In fact there is a strong genetic disposition (the tests of one of my daughters confirmed this assumption). But the virulogist supposes ME is transmissible – not contagious like a flu, but transmissible especially in ongoing familiar contacts. And thats what we experienced. Each time one of us worsened the next felt ill or relapsed. Virulogists explanation: Normally the viral pathogen is somehow closed in our body, but when the condition worsens our body is no longer able to keep the pathogen.
I think maybe the reason pacing is so difficult is because it expects us to override our built-in behavioral programming. This is what I mean: when we pace, the reward is not immediate. The reward may not be apparent for days or months or years. When we do not pace, the reward is immediate – we get to do whatever it was that we had wanted to. When we don’t pace, the negative effects are also not always immediate. It may take a day or so or even more, and so I think behaviorally we don’t always connect it.
It’s like training a dog not to urinate in the house. If you discipline them two days later about it, that’s useless. A better strategy is to reward them immediately when they urinate outside as they should.
That’s exactly the opposite of what’s happening with us. I think most of us eventually get the idea that pacing feels better than not, but I do think this is part of why it’s so damn difficult. And I have to give credit to a friend, Heather, for getting my mind started thinking in this direction!
My family keeps me from pacing. I want to be with my children. I want to be with my husband. I want to be something more than a big lump in bed.
What stops me from pacing… I get tired of being a dishrag. And I want to do what I can. And I’m an extrovert.
I do practice pacing by staying in bed 20-22 hours a day, so I can prepare simple dinners most days. I can also go for a walk sometimes and sometimes meet with a group that means a lot to me. But it’s bed before and bed after, always. And I’m okay with that. Thankful to have a bed and enough income from disability that I don’t have to live under a bridge.
Thanks for bringing up this topic, Cort. Everyone’s responses have been thought provoking for me and pull on my heartstrings. We are so valiant in the face of such long standing suffering. I’d like to give us a standing ovation.
I agree with pretty much everything people are saying. I also find that:
1. I have an enormous capacity for denial.
For example the first 10 or so years of my illness. I kept going to work and actively ignored how sick I was until it was impossible for me to do so. I actually said these words ‘I’m sick of being sick, so I’m am just going to ignore it’.
Yes. That. Stupid.
2. Willpower is finite.
So, for the same reason I cannot resist the lure of chocolate forever (or even for a few days), I cannot deprive myself of those things that make life worth living.
So I am going on holiday to Europe at the end of the year, with my husband. Although we have planned a trip that will negatively impact me in the least way possible, half of me thinks ‘am I crazy?’ and the other half think ‘bugger it!’ (sorry, I’m Australian).
I love this Ness
“I have enormous capacity to denial” – that just broke me up. I entirely relate 🙂
“Willpower is finite” – another good one 🙂
Good luck on the vacation!
These stories are exactly why I read Health Rising. You all describe my own experiences and it makes me feel a little less isolated. Thank You Cort, for the article and thanks to the patients for all the comments… I’ve got to stop writing now — I’m trying to pace myself.
🙂
Thanks Liz, I really appreciate that. Good luck with the pacing…:). I try to pace when I’m working…My mantra is to slow down, calm down, enjoy myself.
I have a difficult time with pacing because ever since January 2006 after a car accident I have not been the same. I don’t have enough energy for daily activities of living. For example: I have to choose between showering or making meals for myself. Life has become a challenge just to get through the day. When basic tasks of living are to much you are forever in a state of overdoing it and can not even begin to use pacing techniques. I use to be able to do so much more and juggle activities; but now I don’t even leave the house except to go to a doctor appointment. I long for the days when I could get out and do some things and then rest for a few days and recover.
After three years of crashing after each time I felt better, I think I finally understand how important it is. This time was the worst and it scared me to think if I get any worse, what am I going to do, who is going to look after me? I am on my own. I used to be puzzled at the comments I had heard from people I knew who were on medication for Bipolar Disorder. They hated being on their medication because they hated the flatness, the level feeling, They missed the highs and feeling euphoric. Now I get it. I too used to relish the times when I felt well enough to do the things that made me feel…..normal, the things I missed doing that made me feel I was a whole person.
Thanks so much for this, Cort. In case it’s helpful, I wanted to put in why I struggle with pacing. I got ill 5 years ago, but I didn’t become very disabled until the last year. The reasons I struggle with pacing are:
– My wife works full time, so I have to be available to the kids before & after school.
– One of my kids has a disability and needs extra care.
– The other kid has a medical condition that requires monthly Dr. appointments 90 minutes away.
– We haven’t been able to afford assistance with mobility, like a scooter, or assistance with home care.
Things that help with pacing for me:
– My supportive wife who works hard at her job and comes home and makes dinner and does child and home care.
– Our kids are old enough to help around the house some.
– The blessed teachers who have my children during the day.