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.

 

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've had OI since day 2 of ME ,so " time upright" for activity is a crucial part of pacing for me.

 

@Wonko

The feeling of being off-balance/swaying is the first sign for me that my body needs to stop and rest since day one.

 

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

 

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.

 

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

 

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:

• 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).

 

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.

 

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.

 

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

 

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!

 

I read this somewhere.."Work out what you think you can do. Then do half of it."

 

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!

 

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.

 

Also your body muscles are constantly adjusting to the motion of the car.

 

Its probably been mentioned already, though maybe not explicitly, but pacing itself has to be factored into the energy expended. It takes energy to pace properly. Its not a passive process even though it may involve resting.