Pacing - how tired is too tired?

keepswimming

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This is something I'm a bit worried about and I wanted to see what others think.

I recently gave up my job, so now I'm working on improving my pacing and finding my baseline. My NHS therapist said to me that, if I get an increase of symptoms after an activity, I've done too much. So my stopping point should be at a point where I don't feel any increased fatigue afterwards.

This makes sense, in theory. Some activities I'm finding I can reduce to this point, and that's great. But there are other things that I want to do, and make me happy, which do increase my symptoms. By pacing, managing the activity well, and scheduling rest afterwards I can limit the after effects, and prevent a crash, but I do experience symptom increase.

Do you think this is a reasonable? I don't want to do anything that will reduce my chances of getting better. But on the other hand, correct me if I'm wrong, but to never experience symptom increase seems an impossibility? Even if I pace perfectly, it only takes one unexpected event to make me ill!

I think I'm probably putting too much pressure on myself - now whenever I get symptom increase I feel like I'm doing it all wrong, and I'm scared it's my fault I'm not getting better! I'd appreciate hearing people's thoughts on this.
 

Woof!

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I'm working on improving my pacing and finding my baseline. My NHS therapist said to me that, if I get an increase of symptoms after an activity, I've done too much. So my stopping point should be at a point where I don't feel any increased fatigue afterwards.
I've got to agree with your therapist for two reasons. (1) crashes take an additive toll, and (2) as soon as you think you've found a baseline, the line will be moved by something out of your control. You said it yourself: "Even if I pace perfectly, it only takes one unexpected event to make me ill!

I know exactly how you feel, and through the years I've learned to let go of a good deal of my pacing, planning & self-imposed pressure. My body doesn't need the stress. Far too many times I'd awake with Plan A in mind only to have something happen that made me switch to Plan B. Someone else would come up with a better idea, and that would hatch Plan C, then s**t would happen, necessitating Plan D.

Eventually I'd get to Plan G, what God intended me to accomplish that day (some days more, and some days less), and looking back I'd have to agree that it was the best plan after all, even if lots of things didn't get done.

Tomorrow is another day.
 
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I recently gave up my job
I'm so sorry to hear this. I know how much you enjoy your work. Although working with children is incredibly exhausting.

to never experience symptom increase seems an impossibility? Even if I pace perfectly, it only takes one unexpected event to make me ill!
Exactly! You do your best as much as you can, but know that it's impossible to pace perfectly.

I think I'm probably putting too much pressure on myself - now whenever I get symptom increase I feel like I'm doing it all wrong, and I'm scared it's my fault I'm not getting better!
It's not your fault. Pacing helps, but it's still not a cure for ME/CFS.

But there are other things that I want to do, and make me happy, which do increase my symptoms.
One of my mottos is: "There are things worth being tired for." I wouldn't do these things every day, but I think it's important to do the things that bring your joy and make life worth living.
 

Viala

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Far too many times I'd awake with Plan A in mind only to have something happen that made me switch to Plan B. Someone else would come up with a better idea, and that would hatch Plan C, then s**t would happen, necessitating Plan D.

Eventually I'd get to Plan G, what God intended me to accomplish that day (some days more, and some days less), and looking back I'd have to agree that it was the best plan after all, even if lots of things didn't get done.
It happened to me so many times. Pacing works for me about half of the time, then there is everything that I cannot predict, like next day I wake up and receive new work so it totally changes my day, I need to reschedule shopping and cooking, because I can't do everything in one day.

Pacing is more difficult when I enjoy what I do, I think the best would be to test different activities to know that for example one hour is ok but more than that can be risky. It is still tricky because energy levels vary from day to day. So I try not to worry about it too much but observe carefuly how I feel and if it doesn't get worse. Resting at specific hours or scheduling one or two days a week just for rest is a good solution. I found that it is best to rest just when I start to feel additional discomfort, but it is often hard to do, considering that we are already limited and want to enjoy our lives just a little.

There are many factors that can influence our energy levels, but we can observe and learn what is best for us, without putting too much pressure on ourselves. I find making notes on how I feel very useful and it changes my focus to more analytical thinking.
 
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There are many factors that can influence our energy levels, but we can observe and learn what is best for us, without putting too much pressure on ourselves. I find making notes on how I feel very useful and it changes my focus to more analytical thinking
I know I do a poor job pacing mental activities; and emotional jolts can transpire without warning (my neighbor knocks on my door, delivers negative energy, I'm left standing in it).

Mental is real hard and I know it leads to crashes, sometimes intense ones, altho they may vary slightly in tone and quality from a more physical exertion overdo.

I might have done an OK job on mental, then my daughter calls when I should be trying to make dinner.
Or you just get interested in- the new book that came. Oh but dont look at the new book, actually, for very long.


well thats not fun.....
 

Viala

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Mental is real hard and I know it leads to crashes, sometimes intense ones, altho they may vary slightly in tone and quality from a more physical exertion overdo.

I might have done an OK job on mental, then my daughter calls when I should be trying to make dinner.
Or you just get interested in- the new book that came. Oh but dont look at the new book, actually, for very long.


well thats not fun.....
I agree, mental and emotional activities can be more difficult. Sometimes I can do some physical activities but I get tired faster with mental. Books, I have so many that I want to read. I tried to learn speed reading recently, also too tiring. Yeah, that's not fun.
 
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Books, I have so many that I want to read.
Reading books, New Yorkers, magazines, largely I don't and can't anymore. I'm a bit motivated with my new "theme" and I ordered three Archeology Books on the ancient history of where my daughter lives. So I switched interests. This is a defensive mechanism.

But I can only consider a few paragraphs....I also have alot of eye issues which aren't helping matters..Sjogrens probably.
 

keepswimming

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Thanks everyone for your help and advice. I feel like I've got into a better rhythm now - pacing, but not beating myself up because I can't do it perfectly!!

Also thank you @Rebeccare , you are kind to remember! It was a really hard decision but its the right one at the moment ❤️ I'm sad as it was a job I loved, but also relieved I am no longer having to force my body to do so much more than it could cope with!
 

Woof!

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Leaving a job we love is hard. A lot of us are really good at our chosen profession. We also know others may not serve our clients as well, so we will be missed.

It's been more than 25 years since I was forced into early retirement at 37, and over the years I've dabbled in a few volunteer 'variations on the theme' of my profession, a little here and a little there. It allows me to be helpful, but with the support of other volunteers who know the balance beam I perch upon. (When I do too much, they know I might disappear for awhile, but I'll be back.)

@keepswimming, we're all rooting for you!
 

keepswimming

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Thank you so much @Dr.Lynne I really appreciate your kind words and support. I am fortunate enough to have found something similar to what you describe - I am doing a little freelance teaching online, which is completely flexible. I can't do much but I am grateful to have a little something to do, when I'm well enough, with no pressure to do more than I can cope with.