How do you pace?

[Alinda]

It sounds quite "simple", just don't do the things that cause PEM, but I am struggling to pace so much!

My PEM is delayed by about 48 hours, which has made it hard for me in the past to recognize correlations in the first place. I think I can usually recognize what activities caused PEM now, but I still cannot figure out a clear idea of when I can handle things.
It does not help that I spend the first 2 years (3+ years now) of being ill pushing trough and doing CBT, GET and pacing up approaches and experiencing constant "force" to go to school! The things that were said to me often creep into my mind, and it's a constant battle against these thoughts saying that I need to "just do sports" and to "not think about your symptoms"...

I currently track my FUNCAP score every month, use a smartwatch (which I can only really use for step counting, as the "stress" levels seem completely random and disconnected from how I feel, same as the amount of POTS or my hr) and track some symptoms weekly (pain, sleep, eating difficulties, fatigue and brainfog).


I would love to hear some strategies people use!

 

[Kitty]

I have an idea of what I can manage in a week, and try to keep to that.

It's varied a lot over the years, but when there's been a change in severity I've always reached a point where I know (a) roughly what I can do without too much payback and (b) how I need to schedule it, given that some things need more rest days than others. I'm also willing to drop everything if significant PEM kicks in.

I've never used scores or symptom tracking, but only because I haven't the patience. I can always think of something more interesting to use the energy on! It does seem to help some people, though, if you can do it without feeling as if you might expire any minute from the sheer boredom (I've either got a really camp drama queen living in my back brain, or it's the ADD).

 

[Alinda]

I have an idea of what I can manage in a week, and try to keep to that.

It's varied a lot over the years, but when there's been a change in severity I've always reached a point where I know (a) roughly what I can do without too much payback and (b) how I need to schedule it, given that some things need more rest days than others. I'm also willing to drop everything if significant PEM kicks in.

I've never used scores or symptom tracking, but only because I haven't the patience. I can always think of something more interesting to use the energy on! It does seem to help some people, though, if you can do it without feeling as if you might expire any minute from the sheer boredom (I've either got a really camp drama queen living in my back brain, or it's the ADD).

How much payback is acceptable for you?
I think I may be struggling a lot with "deciding" that, I obviously avoid things that cause significant PEM, but the smaller problems where I "simply" get a headache and cannot go outside for 4 days just doesn't feel that impactful (when I am not in that state, when I am in this kind of milder PEM I absolutely regret doing too much, I just don't really remember it well enough to relate to my previous experience.)

 

[Kitty]

How much payback is acceptable for you?

Not feeling really ill, basically.

If I wake up with a very swollen throat that persists for more than an hour plus other 'flu-type symptoms, that's the start of "proper" PEM. I need to prioritise recovery above any non-essential activities.

If my throat's just a bit lumpy and the soreness passes off, that's "acceptable" PEM. It's not going to be a great day, but I can still do things like logging on here, listening to podcasts, maybe a bit of reading etc. to distract me from it not being a great day. More importantly, it'll not last longer than a day or so and I'm not at risk of compounding it by doing necessary stuff.

Everyone's underlying capacity level is different, and everyone probably has different warning signs indicating how bad it's going to be. If I can limit "acceptable" PEM to no more than twice a week, I'm coping and not likely to head into a crash. "Proper" PEM is a big red flag though.

 

[Hutan]

You know that story that life coaches and motivational speakers like to tell about when you are filling a bucket with rocks and sand, you put the big bits in first, because the small bits will fit in around them. Clearly there's a reason I'm not a motivational speaker, because when I heard it, I thought, what a great analogy. Whereas when I write it, it seems lame and even I am wondering why someone is bothering to put rocks and sand in a bucket. But you know, it was supposed to be about prioritising the things that are most important to you.

Well, I reckon 80% of pacing for ME/CFS is taking a lot of the big bits out. People get all excited about heart rate variability or scheduling or using a shower chair or cutting the vegetables for the evening meal in the morning. But I think the key thing is to try to arrange your life so that most of the time you can function without getting relentlessly knocked by PEM.

That might mean working only part-time from home, or not working. It might mean giving up studies. It might mean moving to a smaller lower maintenance house with no stairs, or moving back in with your parents. It might mean not having a dog (with its need to be walked). It might mean not having children or working out how to get help to care for your family. It might mean cutting out hobbies that are exhausting.

Having cut out some of the big things, I don't have to get every other decision right, because I have a bit of leeway. Avoiding PEM becomes a bit easier. In theory, I also have a better chance of having a routine that helps me predict what combination of activities is likely to be okay.

A key thing I think is having flexibility. So, whatever I'm doing, if I feel signs of PEM coming on, I ideally want to be able to say 'sorry, I've got to go lie down now', and go do that.

My signs that I'm heading for PEM are:
loss of power in my muscles, like Kitty, a sore throat is a bad sign for me, forgetting words, bone-crushing fatigue, not being able to easily read, glands around the back of my ears and under my armpits get tender.

 

[Trish]

I was really bad at pacing for the years I was working. Some big things had to go immediately, mostly enjoyable things like tap dancing classes, hiking with friends and even going on holiday and doing active stuff with my children. Those were sad but not difficult decisions because I simply couldn't physically do them any more.

The daily pacing became much easier once I was forced into ill health retirement and moved to a home with bedrooms on the ground floor.

The next big improvement in pacing was wearing a step counter and discovering my limit was lower than I thought, and deliberately being more efficient in the amount of walking I do.

I rely on my immediate symptoms to remind me to break up activities and stop and rest often, helped by a wearable heart rate monitor that shows me the increased symptoms are coinciding with heart rate spikes, which encouraged me to take more notice of symptoms sooner, and push through less.

I don't get sore throats or tender lymph nodes. My immediate symptoms that tell me to rest are nausea, OI in the form of a strong need to sit with legs raise or lie down to prevent fainting, and increased pain and weakness in my legs if I'm standing or walking, again with a feeling of imminent collapse.

All of these changes have led to much reduced frequency of bad crashes. But they have not led to overall improvement in my health or capacity for activity, which continues to decline gradually.

 

[Kitty]

That's actually a great analogy, @Hutan, and exactly what I've done. The trouble with having been ill so long is that I can't remember it, or what it was like not having worked it out.

I'm retired now and had to give up work 12 years before that, so the only big rocks that've been in my bucket are the ones I most want there. Occasionally life throws up new ones, but I'm talking about the regular, week-to-week things.

I thought about (without even consciously doing it) what were the most important things to my sense of wellbeing and self and values, that I can still manage given a powered wheelchair and plenty of time. Those are the biggest lumps of rock.

There are smaller ones called Life Admin and Not Living In A Complete Pigsty, but they can be broken down, arranged to suit, and abandoned for a while when necessary.

The first, and arguably one of the most important, things you have to do with ME/CFS is lower your standards. For a start, bodies that aren't very active don't need a complete wash every day, the pressure to do that is relatively recent and a product of the advertising industry. (I was a youngster in the 1970s, and everyone bathed once a week with the 'stinky bits' washed at the sink in between.) Also, houses don't need to be spotless—see above re advertising industry. Dust on the furniture is harmless unless you have allergies.

It's a big shift of values and priorities, but it does make you realise how much needless work people are guilt-tripped into doing. Getting free of that can take quite a long time, but it really feels like a victory.

 

[Utsikt]

Well, I reckon 80% of pacing for ME/CFS is taking a lot of the big bits out. People get all excited about heart rate variability or scheduling or using a shower chair or cutting the vegetables for the evening meal in the morning. But I think the key thing is to try to arrange your life so that most of the time you can function without getting relentlessly knocked by PEM.

This was the big thing for me. Identify things that are too much, and put all your energy, goodwill and resources towards eliminating those.

It really, really sucks. It’s such a heartbreaking thing to do, because you’re losing substantial parts of your life. But for me, it was the only way to keep something (even though that something is minuscule).

The biggest hurdle is probably getting enough help and acceptance from the people around you. It will look like resignation and depression to them, and they’ll fight against it. That process was even worse than the losses I had to endure.

 

[Trish]

The biggest hurdle is probably getting enough help and acceptance from the people around you. It will look like resignation and depression to them, and they’ll fight against it. That process was even worse than the losses I had to endure.

So true. The lack of belief, understanding and acceptance cost me the goodwill of colleagues, some friendships and my marriage.

There were no good resources back then to explain convincingly the effects of the illness. I hope we can do better with our fact sheets. The whole concept of activity worsening an illness is so foreign to cultures steeped in the benefits of exercise, and where striving, achieving, studying and having a job are valued, and anything else is seen as laziness, malingering or worse.

 

[Utsikt]

So true. The lack of belief, understanding and acceptance cost me the goodwill of colleagues, some friendships and my marriage.

I’m so sorry, that must have been terrible to go through.

I hope a result from DecodeME might be able to give more legitimacy to ME/CFS, even if it doesn’t give us the answers yet. But it still wouldn’t help explain the contra-intuitiveness of PEM.

 

[Trish]

I’m so sorry, that must have been terrible to go through.

Thanks, it was all a very long time ago.

 

[Alinda]

You know that story that life coaches and motivational speakers like to tell about when you are filling a bucket with rocks and sand, you put the big bits in first, because the small bits will fit in around them. Clearly there's a reason I'm not a motivational speaker, because when I heard it, I thought, what a great analogy. Whereas when I write it, it seems lame and even I am wondering why someone is bothering to put rocks and sand in a bucket. But you know, it was supposed to be about prioritising the things that are most important to you.

I love that analogy!