Would you like to explain what that is? I haven't heard the phrase before.
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Pacing - what do you do/how would you describe it?
Would you like to explain what that is? I haven't heard the phrase before.
I like your inclusion of ‘how to know’ when to pace in this question Andy. For me, pacing used to be something I resented because it represented what ME had taken from me, ie I knew full well (even while pushing through) that I would ‘pay’ for doing too much in a few days time (and when I first read a definition of PEM a few years after diagnosis it all fell into place).
The reality is, I know that pacing is an essential component of my every day life and especially so on those rare days when I feel as though I can do more...I have learnt from crashes and PEM that doing too much on consecutive days is diabolical - well more diabolical than doing too much on any given day...
I liken it to strategic planning week by week...medical appointment one day means do not even consider washing hair for at least two days post appt. Feel like cleaning the pantry out (oh no, why??) just do one shelf then rest with feet up. And rest means rest because reading, watching TV and chatting also Use up energy supplies.
Pacing is a lifestyle that I have had to learn to accept...
Please first explain what you want explained.
PS Maybe start with my earlier post ...
https://www.s4me.info/threads/pacing-what-do-you-do-how-would-you-describe-it.15972/#post-274799
In particular this bit - This discussion arises every few years or so. One quick test for some is this ... if I start breathing hard, panting etc., then I have already overdone it.
AliceLily
Senior Member (Voting Rights)
In the acute severer levels of ME it is was more 'total bed rest' for me. The ME was controlling and pacing just wasn't applicable due to how easy it was to trigger a worsening of symptoms.
I felt more in control at moderate level to apply pacing but then I don't call it 'pacing' I have found that a 'resting routine' works better for me. Pacing, for me, is too much of a head job and with the cognitive problems I just can't apply it in a pacing way so I have a routine of resting all afternoon and evening. I get up to do the odd thing and back to bed again. I go out most mornings and any activity I do is managed by the resting routine.
I have 'liked' everyone's post but haven't been able read each one yet except for some short posts.
I felt more in control at moderate level to apply pacing but then I don't call it 'pacing' I have found that a 'resting routine' works better for me. Pacing, for me, is too much of a head job and with the cognitive problems I just can't apply it in a pacing way so I have a routine of resting all afternoon and evening. I get up to do the odd thing and back to bed again. I go out most mornings and any activity I do is managed by the resting routine.
I have 'liked' everyone's post but haven't been able read each one yet except for some short posts.
PhysiosforME
Senior Member (Voting Rights)
This is such a great thread and thank you @Andy for posting. We will definitely be using this information to help with our podcast
With regard to the comment about pacing as treatment, we say the following on our website
"Physiotherapy will not "treat" the underlying disease mechanisms.
Physiotherapy techniques can help alleviate symptoms and improve quality of life.
Goals should be around management, not treatment"
Hope that helps reassure.
Please keep the information on pacing coming - it is brilliant. Thank you all
Invisible Woman
Senior Member (Voting Rights)
One of the things I find it hardest to get across to other people is that pacing is a very interactive process, it's hard work whereas non ME people often seem to think it means taking it easy.
I need mental cognitive energy & function to observe myself- be self aware - but when I start to fade the higher functions including that level of awareness disappear....and it can be quite some time before I notice. This is a real danger zone for messing myself up.
So for me pre-emptive resting before I lose higher cognitive function can really help. As others have said it takes a huge amount of self discipline, I don't like it, it can feel punitive but, if I want some quality of life that's what I need to do.
The other thing I found is changing how I think about tasks of daily life. Instead of doing them the most effective and efficient way, to reduce the risk of PEM I break them into smaller tasks. It can take more energy in the long run but it actually makes me more likely to achieve at least some things without injuring myself or doing too much damage to my property.
Task switching can also be helpful as others have said. I normally find it works best if I switch before I feel I need to. Switching between a physical and cognitive task or vice versa is most effective. Switching between cognitive tasks doesn't really work for me.
I need mental cognitive energy & function to observe myself- be self aware - but when I start to fade the higher functions including that level of awareness disappear....and it can be quite some time before I notice. This is a real danger zone for messing myself up.
So for me pre-emptive resting before I lose higher cognitive function can really help. As others have said it takes a huge amount of self discipline, I don't like it, it can feel punitive but, if I want some quality of life that's what I need to do.
The other thing I found is changing how I think about tasks of daily life. Instead of doing them the most effective and efficient way, to reduce the risk of PEM I break them into smaller tasks. It can take more energy in the long run but it actually makes me more likely to achieve at least some things without injuring myself or doing too much damage to my property.
Task switching can also be helpful as others have said. I normally find it works best if I switch before I feel I need to. Switching between a physical and cognitive task or vice versa is most effective. Switching between cognitive tasks doesn't really work for me.
Ravn
Senior Member (Voting Rights)
We also discussed pacing in this members only thread: https://www.s4me.info/threads/feedback-please-draft-info-sheets-pem-pacing.13712/
This led to a pacing guide based on pwMEs' experiences and is available here: https://m.e.awareness.nz/a-guide-to-pacing-for-pwme
@Hutan's shorter pacing guide is in the thread mentioned in the opening post, more precisely here:
https://www.s4me.info/threads/pacing-definitions-and-sources-of-information.8098/page-5#post-241039
Ravn
Senior Member (Voting Rights)
The answer to the question of when do I use pacing is: always, all the time. I view pacing as a preventative measure, albeit an imperfect one.
I'm one of the people who have no early signs of overdoing it. My PEM threshold is "invisible".
If I keep going until I get the first hint of an increased symptom I'm already waaaay too late; a solid dose of bad PEM is on its way.
If I go past my "invisible" threshold but stop before actual symptoms appear, PEM will still happen but somewhat milder and shorter.
So for me the aim of pacing is trying to stay under that "invisible" threshold as much as possible. Trying is the operative word here. We all know that our PEM thresholds are moving targets and anyway, in real life sometimes we have to exert beyond them. But as much as possible, my motto is don't push the (energy) envelope, stay in it.
On that last point, for those who still think that you have to push yourself at least a little to get better, that's not my experience at all. I've had 2 almost complete remissions in the past. They just happened. My energy envelope increased naturally all by itself and somehow my body *knew* this and I gradually drifted into a more active lifestyle without ever giving it a thought. Just wished it would happen a 3rd time!
My key pacing strategies:
***My basic routine is a constant round of: rest - brief active time - cognitive time - very brief active time - rest.
Then rinse and repeat, and repeat again, and again, many times over a day. I adapt the routine depending on how I feel on any given day. Make some periods longer and others shorter, and swap in or out more or less energy-intensive activities.
Active time includes standing or walking, mostly moving from A to B in the house, up to 2 minutes at a time, plus several minutes of doing something sitting down like food prep or getting dressed (with mini-breaks as needed, e.g. get half dressed, sit quietly for a bit until HR comes down again, then finish dressing).
Cognitive time is spent in the recliner with feet up doing stuff on the computer or conversing with my husband or, rarely, some friends. Half an hour max at a time on a better day if doing something easy.
Rest is in lying down for 30-45 minutes at a time. On a better day I listen to easy audiobooks or podcasts. On a less good day it's gentle classical music. A bad day calls for silence.
Accepting the need for so much routine was - is - difficult. I'm naturally quite spontaneous and not overly organised, plus I like to really get stuck into things when I get in a "flow" - but it's worth the effort. I'm convinced I get a little more done overall with less PEM and less POT (for some annoying reason, if I lie down for more than 45 minutes at a time my POT gets a lot worse once I get up again).
I'm one of the people who have no early signs of overdoing it. My PEM threshold is "invisible".
If I keep going until I get the first hint of an increased symptom I'm already waaaay too late; a solid dose of bad PEM is on its way.
If I go past my "invisible" threshold but stop before actual symptoms appear, PEM will still happen but somewhat milder and shorter.
So for me the aim of pacing is trying to stay under that "invisible" threshold as much as possible. Trying is the operative word here. We all know that our PEM thresholds are moving targets and anyway, in real life sometimes we have to exert beyond them. But as much as possible, my motto is don't push the (energy) envelope, stay in it.
On that last point, for those who still think that you have to push yourself at least a little to get better, that's not my experience at all. I've had 2 almost complete remissions in the past. They just happened. My energy envelope increased naturally all by itself and somehow my body *knew* this and I gradually drifted into a more active lifestyle without ever giving it a thought. Just wished it would happen a 3rd time!
My key pacing strategies:
- Routine***. Actually that's routines in plural, I have one for average sort of days, another for bad days, another for really awful days,... Routines save cognitive exertion and make it easier to spot when a non-routine activity causes trouble down the line.
- Pre-emptive rest periods included in the routines.
- Time limits on activities. I tend to get carried away otherwise.
- Learning from observation and experience. Taking note of what I can get away with, and what not, on a better day or on a worse day. Basically developing a gut feeling for what's ok and what's not.
***My basic routine is a constant round of: rest - brief active time - cognitive time - very brief active time - rest.
Then rinse and repeat, and repeat again, and again, many times over a day. I adapt the routine depending on how I feel on any given day. Make some periods longer and others shorter, and swap in or out more or less energy-intensive activities.
Active time includes standing or walking, mostly moving from A to B in the house, up to 2 minutes at a time, plus several minutes of doing something sitting down like food prep or getting dressed (with mini-breaks as needed, e.g. get half dressed, sit quietly for a bit until HR comes down again, then finish dressing).
Cognitive time is spent in the recliner with feet up doing stuff on the computer or conversing with my husband or, rarely, some friends. Half an hour max at a time on a better day if doing something easy.
Rest is in lying down for 30-45 minutes at a time. On a better day I listen to easy audiobooks or podcasts. On a less good day it's gentle classical music. A bad day calls for silence.
Accepting the need for so much routine was - is - difficult. I'm naturally quite spontaneous and not overly organised, plus I like to really get stuck into things when I get in a "flow" - but it's worth the effort. I'm convinced I get a little more done overall with less PEM and less POT (for some annoying reason, if I lie down for more than 45 minutes at a time my POT gets a lot worse once I get up again).
ahimsa
Senior Member (Voting Rights)
Yes. It's not fun! And the added cognitive load is often overlooked.
I'm lucky that my husband really gets that resting/pacing is work for me. Of course, it's annoying as hell when I would really rather be doing something (anything) than lying here in the recliner.
When I'm in the middle of a PEM "crash" it's not hard to rest -- I feel like crap and don't want to move.
But when I'm trying to AVOID a PEM "crash" it's hard to make myself rest as much as I really need to.
Pacing just about as difficult for me to describe as it is for me to do.
Invisible Woman
Senior Member (Voting Rights)
I've just thought of this - I'm not sure how common this is but I know others have mentioned it before so I'll add this as it's caught me out many times -
Sometimes I get bursts of energy. I' won't feel well but much better than usual. It's not a hyperactive state but, suddenly, a lot of little insurmountable tasks seem possible.
For me this usually happens after I have been stressed, or, for reasons beyond my control, had to push through to achieve something that is usually beyond me. Sometimes I crash, but sometimes I seem to get a surge of energy.
Bitter experience has shown me that this is a false energy and, rather than being a sign I should do a bit more, is a warning that I have pushed too far and am likely to crash. I need to pull back and reduce all activities immediately.
The really hard part is that when this happens you don't feel like resting at all, you really want to be up and about. This is when you'll doubt yourself and think if I can do more than I should. You think maybe the BPS school of thought has a point because you pushed yourself and felt better for it.
I don't know why this happens but I assume it's to do with either an adrenaline or hormone surge and following the peak surge there will be a sharp drop and you plummet into a more recognisable pattern of PEM or a crash.
When Type 1, insulin dependent diabetics are having a hypo if their sugar levels drop to a critical stage their bodies release an emergency supply of glucose. If their sugar levels haven't been addressed fast they will feel very, very ill once they've burned through the emergency glucose supply. I wonder if what happens with ME is a similar type of process.
In short, beware sudden, marked improvements especially when they occur after unusual stress or activity. Try not to take advantage of the fleeting feeling of improvement but, if you can, do less. If it's a genuine improvement it will still be there next week even if you don't leap from your bed or sofa. If it's not you could reduce the severity of the crash that may be coming your way.
Sometimes I get bursts of energy. I' won't feel well but much better than usual. It's not a hyperactive state but, suddenly, a lot of little insurmountable tasks seem possible.
For me this usually happens after I have been stressed, or, for reasons beyond my control, had to push through to achieve something that is usually beyond me. Sometimes I crash, but sometimes I seem to get a surge of energy.
Bitter experience has shown me that this is a false energy and, rather than being a sign I should do a bit more, is a warning that I have pushed too far and am likely to crash. I need to pull back and reduce all activities immediately.
The really hard part is that when this happens you don't feel like resting at all, you really want to be up and about. This is when you'll doubt yourself and think if I can do more than I should. You think maybe the BPS school of thought has a point because you pushed yourself and felt better for it.
I don't know why this happens but I assume it's to do with either an adrenaline or hormone surge and following the peak surge there will be a sharp drop and you plummet into a more recognisable pattern of PEM or a crash.
When Type 1, insulin dependent diabetics are having a hypo if their sugar levels drop to a critical stage their bodies release an emergency supply of glucose. If their sugar levels haven't been addressed fast they will feel very, very ill once they've burned through the emergency glucose supply. I wonder if what happens with ME is a similar type of process.
In short, beware sudden, marked improvements especially when they occur after unusual stress or activity. Try not to take advantage of the fleeting feeling of improvement but, if you can, do less. If it's a genuine improvement it will still be there next week even if you don't leap from your bed or sofa. If it's not you could reduce the severity of the crash that may be coming your way.
JemPD
Senior Member (Voting Rights)
This.
Friend: "well why did you do that Jem? That is so obviously too much why did you carry on/do that extra thing when you know it makes you ill?"
Me: " Well because by that time i was too confused/disoriented to recognise the signs to stop/not do it.... Why did you do that stupid thing when you were drunk?"
Friend: "Because i was too drunk to realise it was unwise..."
Me: "precisely"
Yes i endorse this x10
Sorry, this ended up longer than intended.
Short version: Pacing is difficult. Mostly impossible to balance the need to cut back to avoid crashing and deteriorating, with the need to keep home, caree, and self functioning. Fitbit helps.
Long version:
I rate my ME currently as mild cognitively and at the moderate end of severe physically. Housebound and mostly bedbound, only able to sit upright or stand (feet on the floor) for a few short bursts of a few minutes each day, but able to do several hours a day cognitively.
Cognitive:
One of the things that makes it hardest for me to pace, especially cognitively, is boredom. And the more I'm heading for a crash, the more restless my mind becomes, giving the tired but wired sleeplessness when I'm heading into a crash. Only when I'm badly crashed does my mind go into such a fog that I'm barely able to think at all and end up lying in bed dozing on and off, and not being able to follow an audiobook or radio program.
Physical:
Physical pacing I find particularly difficult because I have always had a home to run and caring responsibilities throughout my ME. The thing that has helped me most is wearing a wrist fitbit and using it to keep my 'step' count (movements of non dominant arm) below 1000/day and using pulse rate to tell me when I've overstepped on a short burst of activity.
Steps:
When I first got the fitbit a few years ago, I was fluctuating between a few hundred and up to 3000 steps a day, and crashing more often. Once I evened it out more and cut out the high activity days, setting my target at an upper limit of 1250 'steps'/day the number of episodes of PEM markedly decreased. I put 'steps' in inverted commas because, being wrist worn, it counts some arm movements as steps, for example putting on a cardigan while sitting counted as 20 steps.
Pulse: According to the recommendation of keeping the pulse rate below 60% of 220 minus age in years (I'm 70), I should keep my pulse rate below 90 beats per minute. My resting pulse rate is around 70. Keeping it below 90 is impossible, so I try to keep it below 100 as much as I can. That means splitting my upright activity into very short burst of up to about 3 minutes, which is impossible for me, but I try because I know from experience if I go on for longer, I am likely to crash.
Example: This morning - in bed pulse rate 68, got up, went to the loo in the bathroom next to my bedroom, then to the kitchen next to the bathroom to fetch hot drink and bowl of fruit and yoghurt for breakfast and carried them back to my bed. Total time out of bed less than 5 minutes, walked very slowly, no stairs. Pulse rate 110.
That tells me I should have sat for the 2 minutes while preparing breakfast instead of standing, and maybe done the trips to the bathroom and then to the kitchen as 2 separate trips with a rest in between, or ideally had someone else bring me breakfast in bed, but I don't have servants! It reminds me that I need to break my activities into very short bursts of 1-3 minutes. This is impossible in my circumstances.
A few days ago when the food shopping was delivered my daughter, who also has severe ME, and I between us washed and put away the fridge and freezer food, which involved lots of fairly light lifting, stretching, bending etc. Pulse rate up to about 120. Add that to my normal daily essentials that include getting us meals (mostly ready meals) and washing dishes (sitting on a stool), and a long phone call with my son which was lovely but exhausting, and I ended up semi crashed the next day and crashed and with a migraine the day after.
It's such a tight balancing act. I know I should spend far less time on the forum, and sometimes I overdo it cognitively and suffer the ill effects, but I need it to keep me sane - the downside - my arms and shoulders are in constant pain from typing.
I was employing a cleaner and carers to help me shower and do a few other household tasks, but with covid19 I have discontinued them all. The downside is the house is dirty, I've had to get my daughter to clip my hair very short so I can manage to wash it occasionally, and only shower occasionally and usually crash a bit the next day. The upside is I'm not chatting to carers and cleaner several times a week, so saving that energy. Swings and roundabouts.
Pacing for me is about trying very hard to pare back essential activities to avoid crashes while still doing enough physically to keep the household running and congitively to stop me going mad from boredom.
It was never, and has never been, about needing to be persuaded to do more. Trying to do more, in fact even just doing enough to keep going, has always, unfailingly, time after time, led to crashes and long term deterioration.
Edit: This post took me about an hour to write and edit. So frustrating that when healthy I would have done it in 5 minutes.
Short version: Pacing is difficult. Mostly impossible to balance the need to cut back to avoid crashing and deteriorating, with the need to keep home, caree, and self functioning. Fitbit helps.
Long version:
I rate my ME currently as mild cognitively and at the moderate end of severe physically. Housebound and mostly bedbound, only able to sit upright or stand (feet on the floor) for a few short bursts of a few minutes each day, but able to do several hours a day cognitively.
Cognitive:
One of the things that makes it hardest for me to pace, especially cognitively, is boredom. And the more I'm heading for a crash, the more restless my mind becomes, giving the tired but wired sleeplessness when I'm heading into a crash. Only when I'm badly crashed does my mind go into such a fog that I'm barely able to think at all and end up lying in bed dozing on and off, and not being able to follow an audiobook or radio program.
Physical:
Physical pacing I find particularly difficult because I have always had a home to run and caring responsibilities throughout my ME. The thing that has helped me most is wearing a wrist fitbit and using it to keep my 'step' count (movements of non dominant arm) below 1000/day and using pulse rate to tell me when I've overstepped on a short burst of activity.
Steps:
When I first got the fitbit a few years ago, I was fluctuating between a few hundred and up to 3000 steps a day, and crashing more often. Once I evened it out more and cut out the high activity days, setting my target at an upper limit of 1250 'steps'/day the number of episodes of PEM markedly decreased. I put 'steps' in inverted commas because, being wrist worn, it counts some arm movements as steps, for example putting on a cardigan while sitting counted as 20 steps.
Pulse: According to the recommendation of keeping the pulse rate below 60% of 220 minus age in years (I'm 70), I should keep my pulse rate below 90 beats per minute. My resting pulse rate is around 70. Keeping it below 90 is impossible, so I try to keep it below 100 as much as I can. That means splitting my upright activity into very short burst of up to about 3 minutes, which is impossible for me, but I try because I know from experience if I go on for longer, I am likely to crash.
Example: This morning - in bed pulse rate 68, got up, went to the loo in the bathroom next to my bedroom, then to the kitchen next to the bathroom to fetch hot drink and bowl of fruit and yoghurt for breakfast and carried them back to my bed. Total time out of bed less than 5 minutes, walked very slowly, no stairs. Pulse rate 110.
That tells me I should have sat for the 2 minutes while preparing breakfast instead of standing, and maybe done the trips to the bathroom and then to the kitchen as 2 separate trips with a rest in between, or ideally had someone else bring me breakfast in bed, but I don't have servants! It reminds me that I need to break my activities into very short bursts of 1-3 minutes. This is impossible in my circumstances.
A few days ago when the food shopping was delivered my daughter, who also has severe ME, and I between us washed and put away the fridge and freezer food, which involved lots of fairly light lifting, stretching, bending etc. Pulse rate up to about 120. Add that to my normal daily essentials that include getting us meals (mostly ready meals) and washing dishes (sitting on a stool), and a long phone call with my son which was lovely but exhausting, and I ended up semi crashed the next day and crashed and with a migraine the day after.
It's such a tight balancing act. I know I should spend far less time on the forum, and sometimes I overdo it cognitively and suffer the ill effects, but I need it to keep me sane - the downside - my arms and shoulders are in constant pain from typing.
I was employing a cleaner and carers to help me shower and do a few other household tasks, but with covid19 I have discontinued them all. The downside is the house is dirty, I've had to get my daughter to clip my hair very short so I can manage to wash it occasionally, and only shower occasionally and usually crash a bit the next day. The upside is I'm not chatting to carers and cleaner several times a week, so saving that energy. Swings and roundabouts.
Pacing for me is about trying very hard to pare back essential activities to avoid crashes while still doing enough physically to keep the household running and congitively to stop me going mad from boredom.
It was never, and has never been, about needing to be persuaded to do more. Trying to do more, in fact even just doing enough to keep going, has always, unfailingly, time after time, led to crashes and long term deterioration.
Edit: This post took me about an hour to write and edit. So frustrating that when healthy I would have done it in 5 minutes.
Forestvon
Senior Member (Voting Rights)
I think an important part of pacing is understanding what uses up your energy ration apart from physical activity and your worst triggers, as some not obvious to uninitiated.
Time upright standing still or sitting upright because of OI - I never realised till too late.
Interaction - not just energy talking and listening but you use eyes to look at the person or people.
Two friends who know each other can mean they interact while you rest so can be easier, but nightmare if they don't know each other and you feel responsible as host/hostess.
Talking on the phone can be more intense as silence is not normal whereas a friend can sit quietly, eg looking out of the window.
Looking at screen - I found a zoom church group meeting less payback when I didn't look, just listened.
Scrolling down screen
Other cognitive activity reading, listening to radio or book, tv etc
Realise that life happens without your control so you need energy in reserve for unexpected demands
I try to make my motto 'nothing is urgent' and surprising how often things arent.
But so hard to discipline yourself!
Time upright standing still or sitting upright because of OI - I never realised till too late.
Interaction - not just energy talking and listening but you use eyes to look at the person or people.
Two friends who know each other can mean they interact while you rest so can be easier, but nightmare if they don't know each other and you feel responsible as host/hostess.
Talking on the phone can be more intense as silence is not normal whereas a friend can sit quietly, eg looking out of the window.
Looking at screen - I found a zoom church group meeting less payback when I didn't look, just listened.
Scrolling down screen
Other cognitive activity reading, listening to radio or book, tv etc
Realise that life happens without your control so you need energy in reserve for unexpected demands
I try to make my motto 'nothing is urgent' and surprising how often things arent.
But so hard to discipline yourself!
Forestvon
Senior Member (Voting Rights)
I have a pedometer but wanted it to be sensitive to count arm movements as they use up energy too. The one thing any step count doesnt register is what for me is the worst ie standing still!
Invisible Woman
Senior Member (Voting Rights)
So true.
I have had difficulty explaining to people that even being driven somewhere in silence, in my own car, with my husband driving is a huge cognitive burden. The eyes still see, the ears still hear and the brain still filters and processes. It's the brain filtering and processing that does the damage (noise & light sensitivity aside).
Or cognitive activity & this is at least as disabling for me.
Forestvon
Senior Member (Voting Rights)
Also your body muscles are constantly adjusting to the motion of the car.