Pacing Help (also: paralysis!)

[R.Little]

Hi!

I know that cfsselfhelp.org offers classes about Pacing, but I feel like I just need another human or a group or something to help keep me accountable to building a schedule and sticking to it.

I understand the disease pretty well, I've been doing this for a while now, I just get overwhelmed when I try to start figuring out a schedule. I come up with the activities that I want to include, it's just hard for hard for me to actually do it. I feel like I could walk someone else through the process, I just can't get myself to do it. But I really need to manage my energy better, and there are a lot of things that I think I could accomplish if I were more disciplined. Thoughts?

 

[wabi-sabi]

This sounds like a case for a health coach! You might try talking to one of them. Bruce Campbell also has a book on pacing as well. It might give you more guidance than the website.

I struggle with pacing myself. It's just frustrating sometimes, especially since it can seem like a moving target. If you're feeling overwhelmed on figuring out how, why not break down the task into smaller pieces? That's sort of solving the problem by pacing. I think it's helpful first to figure out (maybe by trial and error) how much energy you have to spend. Once you know that, you can allocate it to different areas. Some people like to be very organized and draw up charts and schedules for energy expenditure. Campbell's book has this approach if you want. This is a bit too complicated for me. I find setting a timer to remind myself to stop what I'm doing and have a rest works (at least a little) to keep from overtiring myself. Then the only schedule I need to remember is to keep setting the timer!

If you want to keep posting here about your process, we can be a group with you.

 

[R.Little]

Knowing how much energy I have to work with would be useful, wouldn't it?

I'm also sort of underselling the urgency here. I've had migraine issues for the past few years, and for the first few months of 2020, I was getting migraines every day. Somehow, my migraines dramatically slowed down at the beginning of June. I have no idea why (I track everything, nothing really explains it). But the problem with my migraines improving is that I had become rather reliant on them for judging my energy levels. They were the brake pedal, you know?

Over the past few weeks, I've had three big crashes, and I couldn't tell you precisely what caused them, other than maybe generally spending too much time on my phone. I mean, I am accustomed to spending six or seven hours a day on my phone, because I can't do much else! Like you, @wabi-sabi, I have timers on my phone to remind me to stop and rest. Normally a timer makes me take a 5-minute rest after looking at my phone for 5 minutes. But I guess I've been overriding those timers a lot more lately because I just haven't been experiencing symptoms from looking at my phone for longer periods. And of course, if I override a timer, I might end up staring at my phone for an hour or two straight. I sometimes have ADHD issues with getting hyper-focused (yes, hyper-focus is weirdly associated with ADHD; it's an issue of executive functioning).

It's a lot easier to stop doing something when I plan to do something else. Just saying "stop doing it!" is less effective.

So I'm trying to define my day a bit more in order to avoid looking at my phone for so long, and hopefully to avoid having severe crashes, which are really beginning to worry me.

Side note: does anyone get periods of total body paralysis when they crash? I used to always get it when I crashed, but when I started taking atenolol for my POTS in 2018, the paralysis disappeared. However, it's returned with a few of these recent crashes, which also really concerns me.

 

[wabi-sabi]

@R.Little What do you mean by paralysis? There are times I will feel too weak to move-if I have overridden pain signals for a while-but I haven't been totally unable to move as yet. I'm not sure what that symptom means. Maybe someone else can give you help there.

If you find planning helpful, what about planning a rest break? That way your mind has something to jump to other than, as you say, "just stop". Figuring out what is the most effective way to rest is also helpful, but challenging. I give myself 20 minutes of brain work and then rest until my brain works again. This is generally longer than 20 minutes! For me, task switching every 5 minutes would be draining in and of itself. My strategy is to make the work periods finite, but make the rest periods as long as they need to be. Rest periods always have to be longer than work periods, no matter how well things are going.

While I'm glad you're not getting the migraines as much, it does sound like finding a new brake pedal would be useful. What other symptoms do you notice, other than the drastic ones, like migraines or paralysis? I have signs like cognitive dysfunction and pain to warn me. If i ignore the warning things get worse. If I pay attention, things are slightly better.

 

[R.Little]

Oh, it's literally paralysis. I dealt with it for years, before I even knew what CFS was. It can last minutes or hours. A few months ago, I started using an iPad for the first time (after only using a phone for a year or so) and ended up spending basically five hours straight on it(!!). Precisely 24 hours later, I was getting ready to leave for a doctor's appointment. I was sitting on a chair, about to put socks on, and then just slumped over, face first onto the floor. It's pretty abrupt. I think it's more common among moldies, but my mold exposure tests came back negative (and I'm not in a position where I can explore extreme avoidance).

Head pain has been my most reliable energy indicator, whether I have a migraine or not. But it's changed. I still get head pain and occasional migraines, but it's not a reliable signal right now (or at least I haven't been able to recalibrate my sensitivity to the current amount of pain). It used to creep up pretty quickly after a few minutes of phone use, but not now.

I think scheduled rests are the best first move, I just get overwhelmed trying to determine how many, how often, and how long.

 

[R.Little]

It's probably worth mentioning that yesterday, when I posted, it was just as paralysis was wearing off from a big crash earlier in the day. The paralysis lasted several hours yesterday, which is pretty long considering I don't even know I triggered it. Usually, if it lasts that long, it's because I did something really extreme, like the 5 hours on an iPad story. But even after that 5 hours on an iPad story, the full body paralysis only lasted maybe 20 or 30 minutes, and then it's slowly began fading. Yesterday, I really had the full body paralysis for several hours before it started to fade.

Today, I still feel really terrible. A lot of pain, difficulty moving, difficulty speaking, very tired. I normally still feel bad on the day after a crash, it takes a few days for me to get back to normal, but I don't normally feel quite *this* bad. I had to cancel a telehealth appointment for today because there's just no way I would have gotten through it. So, you know, I'm a bit worried. I'm a bit concerned.

My boyfriend helped me come up with an initial schedule yesterday, and I'm going to try to stick to it, though today I'm probably mostly going to sleep.

 

[R.Little]

I'm not stoked about how vague the cause of my really big crash is, but it's true that I haven't been forcing myself to rest very much over the past few days. I used my phone a little bit more than usual, and I spent a little more time than usual actually sitting up at a desk doing some things, but mainly I just didn't have significant periods of rest for a few days. I usually meditate for 20 minutes a day, but I've also been lazy about that for a few days.

Given how much pain I'm in today, I'm going to take yesterday's crash as a pretty serious warning shot.

I'm going to schedule some to schedule some phone lockouts with my phone timer app, so I really don't have a choice about resting a few times during the day.

And since I don't feel symptoms so quickly from using my phone now, I'm actually going to increase the timer, as @wabi-sabi suggested, so that I have 10 minutes on and 10 minutes off. I might increase that further to 15 or 20 minutes on and 15 or 20 minutes off, depending on how things go. The hope with that is, first that I'm less likely to disable my timer out of frustration, and second that it gives me longer rest periods. 5 minutes really isn't even a rest, I can't even fully assess my condition in 5 minutes.

 

[wabi-sabi]

@R.Little The episodes of paralysis sound quite scary. Are you able to get an appointment to discuss these? I find telehealth very helpful, since I can do it from my couch. Depending how bad you feel, it might be useful your provider to see you (on telehealth) when you are so ill. If you can manage to talk at all... At any rate, I'd strongly recommend talking to a medical person about the paralysis, since I have no idea what that could be.

Sounds good that you have help creating a schedule. You're quite right to skip the schedule when you are too tired or crashed and just rest instead.

Hoping you can get another appointment soon and let us know how it goes.

 

[R.Little]

Like I said, I dealt with paralysis whenever I crashed for years, until atenolol somehow fixed it in 2018. It's just now apparently returned. I've talked to multiple doctors about it, and there's nothing to say really. It's just another bizarre CFS symptom for me. It's not so much scary as frustrating, at least at this point.

Before I knew what CFS was, I got it all the time. My sleep docs thought it was related to idiopathic hypersomnia or sleep paralysis or something; they just kept giving me more stimulants to "push through it," which obviously didn't help (and likely played a big role in me becoming so severe).

If you look at the ME Association (UK), their paper about PEM lists temporary paralysis as a symptom. I suppose it's less common, but it's a thing. Some people just get certain body parts paralyzed. Julie Rehmeyer used to just get one of her legs paralyzed randomly, but she sometimes got full body paralysis too. Jen Brea's legs abruptly gave out a few times in Unrest.

 

[R.Little]

My onset was initially gradual for five years until I sort of fell off a cliff in late 2017 and got really severe. But I still remember my first crash. I was working at the Washington Post, and I started feeling tired but weird. I went to the bathroom, sat down in a stall, and just closed my eyes and didn't move for like ten minutes.

As things progressed, when I would crash, I would become completely non-responsive for hours. It was really scary for my boyfriend, because there was nothing you could do to get any response from me. I would just be lying on a bed, unable to move or speak, but still fully aware of what was going on around me. Sometimes I could manage to get a word out, but only if I sort of worked myself up to get really angry, and I would end up cursing and saying really awful things. But that was the only way to sort of push any communication out of me--just with utter fury. Probably gave my boyfriend PTSD. Dark times. Dealt with that regularly for over five years.

 

[R.Little]

Aaand damn, this is looking serious.

I was just about to go to bed, but I accidentally spilled some water. I really didn't have much energy left, but I didn't want to wake my boyfriend, so I tried to clean it up. I ended up collapsing on the floor for a while, paralyzed. I mean, it's not totally shocking, I had a really bad crash yesterday and I'm not fully recovered. But the return of the paralysis appears not to be a fluke.

During the first few months of 2018, before I started taking atenolol, I was drinking nearly 2 gallons of sugar-free electrolytes every day, because electrolytes help with the paralysis stuff (and with POTS of course). I learned that much from Julie Rehmeyer. I suppose I will have to start loading up on electrolytes again.

 

[R.Little]

SideNote: Jen Brea was just describing on Twitter how her worst symptoms started after she accidentally gave herself whiplash. One of the symptoms she mentions is waking up paralyzed.

 

[SickOfSickness]

Don't know if these would help you, but in case you haven't seen these:
https://forums.phoenixrising.me/thr...or-prevent-pem-post-exertional-malaise.48438/
For me and others, the pre-exertion and post-exertion supplements allow us to do more and recover faster.

 

[R.Little]

Thanks for the link, @SickOfSickness -- I think I've tried most of those but not all of them. Haven't tried Creatine while having PEM, which might be worth a shot!

 

[Juanita Vee]

Hi! Just wanted to say I also struggle with pacing and have been trying to make myself a daily routine that is still flexible. My morning routine looks like a joke when written down, it's "morning prayer and breakfast," but I find it really helpful. I guess my only suggestion would be that it may look silly, but if it helps to have it scheduled, put it in the schedule. I haven't scheduled lunch and dinner... yet!

I also find less screen time really helpful, but I don't know what to do with myself... t.v. is entertaining, easy, doable, and an escape from feeling yucky, so I usually end up on the computer anyway.

Hope you find some things that work! Hope to hear that you do!

 

[Emmarose47]

Hi!

I know that cfsselfhelp.org offers classes about Pacing, but I feel like I just need another human or a group or something to help keep me accountable to building a schedule and sticking to it.

I understand the disease pretty well, I've been doing this for a while now, I just get overwhelmed when I try to start figuring out a schedule. I come up with the activities that I want to include, it's just hard for hard for me to actually do it. I feel like I could walk someone else through the process, I just can't get myself to do it. But I really need to manage my energy better, and there are a lot of things that I think I could accomplish if I were more disciplined. Thoughts?

I so relate to what u share and thank u because I'm in exactly the same place ...
I swear it was easier nursing patients and several of them than trying to do this for myself ...I guess being objective without the feelings and wants and desires would help but that's not feasible . I find it's all the areas to cover practical, mental health , emotional , social oh and that thing called fun . Trying to have it all singing at the same time and it being enough is the trick I feel . Because I can hit one area for example but the others don't get met .. CFS doesn't seem to like having to fulfill human needs ..
Your not alone in your quest for sorting this all out ..
On paper it all sounds logical in practice it's another story ...
I keep swinging but I'm learning slowly and I know I'll find that ground that allows me to live within my means it's just taking time ...
I have never lived in the normal perimeters of life it all feels quite boring

 

[Emmarose47]

This sounds like a case for a health coach! You might try talking to one of them. Bruce Campbell also has a book on pacing as well. It might give you more guidance than the website.

I struggle with pacing myself. It's just frustrating sometimes, especially since it can seem like a moving target. If you're feeling overwhelmed on figuring out how, why not break down the task into smaller pieces? That's sort of solving the problem by pacing. I think it's helpful first to figure out (maybe by trial and error) how much energy you have to spend. Once you know that, you can allocate it to different areas. Some people like to be very organized and draw up charts and schedules for energy expenditure. Campbell's book has this approach if you want. This is a bit too complicated for me. I find setting a timer to remind myself to stop what I'm doing and have a rest works (at least a little) to keep from overtiring myself. Then the only schedule I need to remember is to keep setting the timer!

If you want to keep posting here about your process, we can be a group with you.

I like the moving target way of looking at it ...makes a lot of sense be why it proves difficult

 

[Emmarose47]

Knowing how much energy I have to work with would be useful, wouldn't it?

I'm also sort of underselling the urgency here. I've had migraine issues for the past few years, and for the first few months of 2020, I was getting migraines every day. Somehow, my migraines dramatically slowed down at the beginning of June. I have no idea why (I track everything, nothing really explains it). But the problem with my migraines improving is that I had become rather reliant on them for judging my energy levels. They were the brake pedal, you know?

Over the past few weeks, I've had three big crashes, and I couldn't tell you precisely what caused them, other than maybe generally spending too much time on my phone. I mean, I am accustomed to spending six or seven hours a day on my phone, because I can't do much else! Like you, @wabi-sabi, I have timers on my phone to remind me to stop and rest. Normally a timer makes me take a 5-minute rest after looking at my phone for 5 minutes. But I guess I've been overriding those timers a lot more lately because I just haven't been experiencing symptoms from looking at my phone for longer periods. And of course, if I override a timer, I might end up staring at my phone for an hour or two straight. I sometimes have ADHD issues with getting hyper-focused (yes, hyper-focus is weirdly associated with ADHD; it's an issue of executive functioning).

It's a lot easier to stop doing something when I plan to do something else. Just saying "stop doing it!" is less effective.

So I'm trying to define my day a bit more in order to avoid looking at my phone for so long, and hopefully to avoid having severe crashes, which are really beginning to worry me.

Side note: does anyone get periods of total body paralysis when they crash? I used to always get it when I crashed, but when I started taking atenolol for my POTS in 2018, the paralysis disappeared. However, it's returned with a few of these recent crashes, which also really concerns me.

Yep I have problems stopping ...I've run on adrenaline my whole life .
Also self restraint is not my specialist area ..

 

[crowtor]

If you have a hard time sticking to schedules, just don't, with this disease you gotta go with the flow or you risk getting worse.

 

[SnappingTurtle]

I struggle with pacing myself. It's just frustrating sometimes, especially since it can seem like a moving target. If you're feeling overwhelmed on figuring out how, why not break down the task into smaller pieces? That's sort of solving the problem by pacing.

I agree! I am just starting time-based pacing. The other methods I have been using only helped a little but was still prone to perpetuating the push-crash cycle. By initially simplifying how I (time-based) pace, I think I will be better set up for success. I will start my own thread later.