Life is not linear, and so even within the constraints of living with ME there are moments when we want to DO things.
The difficulty, for me, is making myself rest immediately after doing that thing, whatever it may be.
You see doing "a thing" feels good!
Probably because the stimulus of the activity releases hormones like adrenalin, and these can mask warning symptoms and so delude my body into believing that it is coping okay.
Sadly, it is my experience that I have to pull back, slow up, and start resting much sooner than I'd like. And usually much sooner than my body starts giving me those warning signals!
This is one of the toughest things about having ME: if I don't stop soon enough, I risk making my condition worse long term, and that is just not fair on anyone.... least of all my family.
So I have to think beyond what I want in the moment...
Take today, I went out and did some agility training with my dog. (I use a mobility scooter, so it's not like I'm running around or anything mad like that.) Anyway, I had a lovely hour with club friends and I came straight back in afterwards.
I had wanted to stay and out longer - wasn't I good?
Once back inside however, the excitement was hard to wind back down. I usually feel "okay" at this point, so it is easy to just carry on doing a bit more of this or that. The point is, I'm not "tired" yet, but if I carry on doing things until I AM tired, then I really have messed up!
So, I have to force myself to sit down, recline my chair, put my feet up and RELAX!
And in that moment, I feel like a small child told to go to bed while the party is still happening!
So I'm wondering now about everyone else.... Do you STOP soon enough?
And how do you manage to curb those childish voices in your head that urge you to just push on a little longer??
I guess it is something with which we all struggle....
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PS I've written a bit about Pacing in these posts. However it is one thing knowing what I should be doing, it is quite another managing to gracefully put it into practice! ;)
Managing Illness through Pacing;
Pacing and Unpredictable Events Sept 2014
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014
Thoughts on Travel and ME Mar 2014
The Dilemmas of Exercise and M.E. Dec 2013
Having suffered since I was child, I'm quite used to pacing. But I often feel that it's all from memory rather than sensations. As in, I walked X steps yesterday, and I don't feel worse today, so that probably my budget for today. If I went entirely by sensations I reckon I'd be crashing every day. Which seems to be what you've described; stopping before you feel those sensations, before you get tired.
ReplyDeleteIt is boring and frustrating though!
I can relate... I'm only ill 3 years, so switching off the old "okay" is still hard, but yes memory is important too. And I also count steps... Fitbit is great. xx
DeleteAtm I think my PoTS is worse than the ME. This is generally a bad thing but when I increased my beta blockers I noticed that I'd got out of the habit of proper Pacing because I get immediate fatigue with POTS rather than having to wait for the confusing, delayed type of exhaustion. I'm having to relearn a bit.
ReplyDeleteAlso do other people find you get into an almost fugue state when (precisely because you are tired and not thinking clearly) you feel a compulsion to carry on an activity? For me this is usually an Internet thing eg twitter or eBay.
Yes... sometimes hard to change activities when beginning to flag. Internet in particular I find difficult to stop. ;)
DeleteYes - just like a child who's been told to go to bed early. That's it, exactly. Thank you for this
ReplyDeleteHa ha! You should hear the little voice in my head... LOL
DeleteWith glass walls and ceilings all around
ReplyDeletewith glass walls and ceilings all around,
easy to shatter, wafer thin
often within reach but unseen,
to find, the shadow of 'soon enough',
is difficult with the mirages of doing,
boredom and necessity
rising above the horizon,
pulling up the next set of targets
to be examined and rejected as
'too much',
'too soon',
'that will be fine',
with this heady mixture
and underground currents
ready to tear at my legs
to pluck my thoughts away,
pulling the words from my throat
to cover them up in sand,
my feet cannot always find the firm ground,
touch the bottom of the pool,
I cannot always make sure
that I will not
drown tomorrow
through the actions
of today.
Do I maintain the count
of the steps I took today
compare them to yesterday, last week
or trust in how my body feels,
gauge its creaks as a miner
listening to the protests of pit-props?
Often I am drowning deep down,
I either swim
or die of thirst.
Jonathan Eyre - March 16th 2015
Wow! Yes... and especially this bit:
Delete"I cannot always make sure
that I will not
drown tomorrow
through the actions
of today."
That was beautiful. Thank you!
DeleteReally well written. I can totally relate to this. Having had ME/CFS for 25 years, I've learned that the best way to recovery is rest - resting before activity, cutting the activity short, and resting afterwards. It's boring and slow and against my personality - but it's working. Thanks so much for sharing this post. Please write more :)
ReplyDeleteThank you Steph... as you say it can be boring being sensible, but so necessary. xx
DeleteI need to stop sooner than I do a lot of the time. Your explanation is spot on.
ReplyDeleteThank you Jane. xx
DeleteThis is so true. You are right when you say we need to stop but doing so is hard. We want to keep going and push on but, like you say, in the end this is the worst thing for us to do. Pacing is something I think I will always been trying to learn to do well
ReplyDeleteIndeed, as you say, pacing is something we will always be
Delete"trying to learn to do well"!
It doesn't really get easier?
I was a swimmer in college and I was really good at pacing my workouts...so much so that my coach was often questioning How to work me hard enough to exhaust me.
ReplyDeleteToday, after living with ME/CFIDS for 15 years, I can say I'm regaining much of the mental toughness that pacing requires...but still I 'hit the wall'. Like today: having to fall back to bed rest because I pushed too hard to please others and expended my entire reserve. I know when I need to rest, but to others it can seem unnecessary...then I feel guilt for needing to rest when others need me strong...and I'm back where it all started.
Pacing. And always remembering (and trying to help loved ones remember)...this disease owns my butt. Literally. And my only solace is the strength to demand the rest I Know I must take.
So resonant for me Sally! Can be so elated to have been out and achieved something and I don't want to have to stop. The temptation is enormous to keep going and to be honest to feel like I did over 20 years ago. I can feel quite"high" At those times and found your post so helpful in reminding me of what I should be doing!
ReplyDeleteI very rarely manage to stop myself in time. I'm quite good at pacing in everyday activities but when I'm doing a bigger activity (maybe something I've been planning and resting for) I get over excited and always do too much.
ReplyDeleteI'm horrible at pacing myself... I wish I could but I love getting things done, and spending more time on things than I probably should x
ReplyDeletewww.sheintheknow.co.uk
As a single parent my pacing options are somewhat limited. There's simply things that need to happen, whether they make me worse or not. I do however know what you mean, especially for those rare occasions where I decide I get to be 'out', and then still surfing the high when I get home. 'Oh that was cool! So now I can....' <-- NO!
ReplyDeleteI've noticed that prior to crashing badly my oldest cat tends to seek out my lap, keeping me from moving around. I try to listen to her as she seems to pick up cues about my health I forget to watch for while trying to keep my family in some sort of order.
I totally relate to this. Stopping soon enough is so hard. The adrenalin does make you feel like you are doing ok and can just squeeze in a little bit more. I'm a doing person, and still learning that resting needs to be my doing now.
ReplyDeleteThank you everyone for the supportive replies. It seems we all struggle with this one. xx
ReplyDeleteI always find that my little voice tells me 'just one more thing' or 'just a few more minutes' or 'just finish this project... you can do it if you keep going.' I am unable to fight this voice much of the time.
ReplyDeleteThe other really big problem is that while I am actively reading or doing art or finishing that project, I can ignore the pain. When I stop, the pain sensations become dominant in my awareness. This is the biggest problem with trying to manage sleep and rest periods. The only way I can get to sleep is to stay awake until I literally cannot stay awake any longer. So I am forever pushing the limits. The reason: If I turn off the computer or the television, or close the book or the puzzle or whatever I am doing, settle in for sleeping, the pain prevents any relaxation and makes me twice as miserable as I would be if I just continued and then found myself in front of the computer with the lights still on at 6 am, having slept a good 6 or 7 hours or whatever.
I don't like this. I feel ashamed of myself for not being in better control. If someone has a good solution to it, I would be happy to try it.
Thanks again. Your blog is wonderful.
Would audio books help distract you during the times you are winding down? I find if I make a cuppa (I only sometimes remember to drink it :P) and then plug into my audio book, that I can rest better than if I try to just "rest", which can be counter productive as my mind fights it. So distraction of a low key level is good, but not too taxing. It takes a wee bit of time to get used to audio books, but a gently paced book read to you is a nice way to start the slowing down process.
DeleteI wish my GP had given me this sort of advice two years ago! So glad I found this blog, it explains a lot about how the condition affects you and the importance of pacing yourself and starting to recharge yourself before you run out of steam rather than flaking out when you're totally out of juice. Thank you. Amanda
ReplyDeleteYes - the GPs are strongly influenced by the fact graded exercise therapy is still recommended by NICE. They have no understanding of the harm that exercise does us, because the guidelines don't give them that information. This is something we must change, so that all newly ill ME patients get good advice.
Deletehi sally, hope this message finds u. thank u for your very informative blog. i especially liked how u listed blogs of same topic near the bottom so they are easily accessible.
ReplyDeleteim in the 4th month of ME, so not officially diagnosed but all symptoms point to it and are acknowledged by GP.
i try to pace myself yet end up crashing every week. ive been off work on leave for more than a month now, but last week my manager asked me to help out with 2 tasks, which would have been completed in a day or 1.5 days, but ended up taking 3 days, as i was having bad days and feeling sick, hard to concentrate etc. and he asked me to do a few more here and there. so i ended up working mon-thu, which i didnt expect as he initially only asked help with 2 tasks.
on friday, i left a voicemail to say i cannot work further as im very sick. i was in truth too sick to work and i was afraid my manager would give me more work 😥😥..
and since then, friday, i am still low on energy and feeling unwell today (Tue)..
my question is how do u pace yourself with cognitive activities? does HR monitoring still work? i cannot yet find a baseline for cognitive activities, the limit upto where i will not crash.
i work in finance.. my employer said they cannot give me part time work as the work load is full time.. so ive been on leave for about 7 weeks now, but i dont know how long they'll let me be on leave and i guess employment could be terminated due to medical incapacity as in the employment contract...
i guess i want to be able to recover and pace myself so that i can carry on working full-time but im not sure if this is possible...
thank u soooo much for listening in and sharing your helpful advice in advance..