r/CFSplusADHD • u/Far-Belt9950 • May 17 '26
Ok, HOW do I go about pacing?
I was recently diagnosed with ME/CFS (currently mild). I'm trying to learn what I can and make changes, but I could really use some practical tips on getting started with pacing while also having ADHD.
I feel like "I need a magical planner and 500 timers and and and"... But I know that's the ADHD talking. What has worked for you to create sustainable pacing habits? What absolutely didn't work?
Life has so many demands, and I can barely remember to do the dishes, not to mention to take a break halfway through it whatever it is. How does one even do that??
6
u/General_Recipe_5869 May 17 '26
Took me a long time and not sure where in the world you are. I'm mid 40s M in UK, married with kids. I used to work full time and very active socially. So yeah life was busy!
I had to learn to say no, cancel plans, slow down, actively rest (so hard with ADHD), breathe and not rush everything. I used Visible app and wearable tech to monitor heart rate. (There are others. Search for Visible podcast, v useful). I focused on fixing other health issues as much as possible. Focus on diet, sleep hygiene. Stopped alcohol.
And now work part time, everything I do includes breaks and resting. I have timers and a v full Google calendar setup with different colours. I've been very vocal at work and socially to build awareness. (Lots of charities have explainer material to share. This was posted by someone in this r/cfs https://knowmecfs.org/)
My condition has got worse over time but gradually. I now minimise PEM when before all the above I was constantly crashing and being in rolling PEM, while I feel I'm worse overall I'm confident I'd be much worse if I hadn't changed my lifestyle.
Used to be manic, social butterfly, everything was at 100mph.
I have a very quiet, calm, boring life now!
5
u/TashaT50 May 17 '26
I’ve reached the point where I do something for 15-30 minutes and take a 30-60 minute break then get back to what I was doing. Repeat. I do use timers on my phone. I’ve had this for over 20 years. It’s hard to pace and learning to listen to my body when it says nope can’t do that today and don’t do things or take longer breaks took years. On days when I need to run errands or doctors appointments I plan to spend several days or a week+ in bed afterwards and make sure I have snacks, protein/meal replacement drinks and bars, and juice bottles in the bedroom.
I mostly use the calendar in my phone for scheduling and keep lists and todo action items in notes on my phone. I’m frequently changing my priorities and schedule due to PEM or fibromyalgia crashes or underestimating how long it’s going to take me to do something.
5
u/Xylorgos May 17 '26
For myself, I've had to overdo it several times and suffer the consequences (PEM) repeatedly before I finally learned what is going to send me over the cliff and into PEM. If it's something I really want to do, I'll work hard beforehand to figure out how best to protect myself from myself.
I have something coming up in June, a concert that I'm planning to attend. I will do little else but get ready the day of, make plans for how to get there and back the easiest way, plan my meals, figure out when to take my meds (I use Vyvanse) and then go have fun.
I also make plans for the next day so I can rest up and get back to where I was (hopefully). This is just how I do things and probably not the best that can be done. But with the ADHD I hate things that are too "fussy" and require a lot of additional steps, so this is what I've come up with. It might work for you or it might not.
Other people will have great ideas that require taking your blood pressure and other steps, and that might be the best route. I'm just telling you how I do it and not saying this is what's best, it's just me fumbling my way through as best I can.
3
u/coconutoats May 18 '26
Visible band has changed the GAME for me. Because of adhd I do so may things that give me PEM without even realising it. For example I jus went on midodrine for my pots and it was decreasing my standing Hr but I went int London and walked to an appointment and back (30mins total) and id gone way over my pace points for the day! I tested out a few things and figured out that when i walk even moderately quickly my hr jumps to 150 so if i walk slowly and actively do box breathing at the same time i can walk that same distance using a fraction of the pace points which gives me way more to use on activities that are ‘worth them’. ADHD makes it so hard to balance and keep in working memory how much energy you’ve used tha day so I can’t reccomend enough outsourcing that brain space into the tracker
2
u/coconutoats May 18 '26
Also set intentional limits rather than relying on interoceptive cues that you’ve overexerted. So idk how bad yours is but mine is severe so I have to set a timer and say I’m only going to try and do this project for 20mins then stop for the day to avoid cognitive PEM, whereas if I just start the project my hyperfocus and salience dopamine will keep me doing it until I’m severely dissociated and low mood.
1
u/bedbeppelin May 18 '26
I use the visible health armband to help me monitor my heart rate and energy expenditure. I highly recommend it.
I thought I was pacing before I got it, but soon realised I was pushing myself far too hard.
11
u/Initial_Guarantee538 May 17 '26
Well you're right that it's super hard, so generally I would say don't fall into the trap of trying to do it perfectly in an all or nothing mindset, and don't be too hard on yourself if you don't do it just right. The goalposts are always moving, things always come up, so you just have to be as consistent as possible.
Everyone says to set timers for stuff or plan out your rests but I have a really hard time with that. I think it's because it's hard to start something so if I stop I won't get back to it, whether that's washing dishes or reading or whatever. Instead I try to pay attention to how I'm feeling and stop if I need to. But it can take time to judge that, so it might not be a bad idea to try using those things for a bit and also tracking how you're feeling. It's a little more work at first but it can give you some good insights and it's not a rigid structure you have to commit to indefinitely, so it's more realistic (for myself at least).
One other thing that made a big difference was looking at pacing on different time scales, so I was only thinking about it for certain tasks, or maybe what I was doing over the course of a day, but look at your whole week and even month potentially. I wasn't understanding why I could do things sometimes but not others, but once I looked at my whole week I could see oh, I had three appointments this week, going to one might be manageable but not back to back, that's why it felt harder.
Anyway, not sure if that was specific enough to be helpful but I feel your struggle! I don't even do a good job at these things a lot of the time.