Detailed pacing information for ME/CFS-flavored fatigue?
April 13, 2023 7:21 AM Subscribe
I'm currently dealing with pretty extreme ME/CFS-flavored symptoms. A pretty decent doctor is working with me, going through their test/diagnose/decision tree, and I'm in a safe and supportive environment. I'm having trouble finding decent guides and tips to learn my "envelope" and to not make things worse; that's as far as I've gotten. Can anyone point me to good information; things I wouldn't think of myself? Spreadsheet templates or gotchas or tips: "you wouldn't think this is draining but people often find it is when they check."
Best answer: Moderate to severe CFS/ME over here. Apologies if I'm misunderstanding what you are looking for-- but on the tips front: Showering is surprisingly taxing for me. When I track my heart rate the app often asks me if I have been working in out vigorously when in fact...Nope. Just washing my hair!
I've also found that PEM doesn't fully capture my experience. It's more like-- on my good days I can do what I want even if that is on a reduced scale. And on my bad days, I can do effectively nothing and do otherwise at my peril. It took me a while to stop being scared that going for a walk on a 'good day' was going to somehow make things worse for me based on what I'd read about PEM
Basically, ME/CFS is a broad category and manifests differently for different people. For better or worse that means that a lot of this needs to be figured out on an individual level. Having a good doctor is a huge win and I'm so glad for you. This is tough stuff. Wishing you all the best and feel free to PM me.
posted by jeszac at 7:38 AM on April 13, 2023
I've also found that PEM doesn't fully capture my experience. It's more like-- on my good days I can do what I want even if that is on a reduced scale. And on my bad days, I can do effectively nothing and do otherwise at my peril. It took me a while to stop being scared that going for a walk on a 'good day' was going to somehow make things worse for me based on what I'd read about PEM
Basically, ME/CFS is a broad category and manifests differently for different people. For better or worse that means that a lot of this needs to be figured out on an individual level. Having a good doctor is a huge win and I'm so glad for you. This is tough stuff. Wishing you all the best and feel free to PM me.
posted by jeszac at 7:38 AM on April 13, 2023
Best answer: PEM is post-exertional malaise, I think, for others who also didn't know it immediately.
posted by Well I never at 7:48 AM on April 13, 2023 [1 favorite]
posted by Well I never at 7:48 AM on April 13, 2023 [1 favorite]
Best answer: I found the free online book Recovery from CFS incredibly useful when I was wrapping my head around pacing in the early stages of long covid (which is essentially a form of CFS). I think the word 'recovery' in the title is a bit of a misnomer, it's really about management of CFS. It eventually gets repetitive so you probably don't need to read the entire book. And I didn't do anything like his level of record-keeping and analysis. But it helped me understand the nature of it all.
Off the top of my head, things people may not think of:
* Mental effort can be as fatiguing as physical - even watching TV can be draining. Actual stress (like work stress) can be super-draining.
* The most restful things for me and many others seem to involve breathing exercises (or google Yoga Nidra) or resting while watching nature eg. lying on my sofa looking out at the trees. Anything that can bring your heartrate down, that's helpful.
* Resting little and often can help extend what you're able to do, so if you want to go for a walk, plan a decent sit in the middle of it. Embrace the afternoon nap, whether you think you need it or not.
* Activity and symptom diaries are super-useful if you have the spoons to keep them. You can find out some surprising things - I discovered that while most cardio was a no-go, gardening didn't seem to fatigue me. I assume that's down to the very stop-start nature of it, which means my heart rate wasn't experiencing sustained highs in the way that I got from cycling or running (huh - on preview, have just seen koahiatamadl mention something similar about gardening - interesting. I also wondered whether the naturally relaxing sights and sounds of nature had some kind of prophylactic effect, but who knows how you'd ever measure that).
* Diary keeping is particularly useful because of the 'post-exertional' part of PEM - very often the kickback from 'overdoing it' doesn't come until a couple of days later and you feel great at the time. Diarising can help to tie up cause and effect. Also, while we're on PEM, 'malaise' is often more than just fatigue - I feel like I've got a virus again, start sneezing, my throat is swollen, I feel like I've got a bad hangover, and I often get a real nosedive in my mental health for a day or so, which magically pings back to normal again once I've recovered from the PEM. Some people call PEM 'post exertional symptom exacerbation' for this reason.
* Chairs and stools everywhere. As jeszac says, showering can be exhausting so make sure you have a chair in the shower, and when you're done, wrap yourself in towels and have a lie down before you tackle getting dressed. A chair in the kitchen or somewhere that you can do food prep while seated. Another one next to where you have to hang out laundry. And so on. (This was all particularly necessary for me because I live alone so there was nobody else to do these chores, YMMV if you have someone else who can take some of them on). If someone stops you in the street to chat, don't be afraid to sit on a nearby wall. Being upright is surprisingly hard.
* Some people like using wearables to track stuff like heartrate, sleep, heart rate variability, etc. I got a cheap 2nd hand Garmin Vivoactive 4 from Marketplace because Garmins have a feature called 'body battery' which kind of synthesises all those things and gives you a score for how much it thinks you have in the tank - a lot of long covidy people are big fans of it. In the end, I felt it was pretty hit-or-miss - the only times it ever told me I had 100% body battery were after nights when I felt like I'd barely slept and was totally shattered. But YMMV.
* Sleep - the feeling of being 'tired but wired' is often a feature of long covid or CFS - you're totally exhausted and desperate for rest, but your body feels like it's stuck in fight-or-flight and you just can't get to sleep. I found it helpful to take sleep aids (Nytol herbal) on the nights that I was especially tired, to break that cycle and get decent rest in.
posted by penguin pie at 8:38 AM on April 13, 2023 [11 favorites]
Off the top of my head, things people may not think of:
* Mental effort can be as fatiguing as physical - even watching TV can be draining. Actual stress (like work stress) can be super-draining.
* The most restful things for me and many others seem to involve breathing exercises (or google Yoga Nidra) or resting while watching nature eg. lying on my sofa looking out at the trees. Anything that can bring your heartrate down, that's helpful.
* Resting little and often can help extend what you're able to do, so if you want to go for a walk, plan a decent sit in the middle of it. Embrace the afternoon nap, whether you think you need it or not.
* Activity and symptom diaries are super-useful if you have the spoons to keep them. You can find out some surprising things - I discovered that while most cardio was a no-go, gardening didn't seem to fatigue me. I assume that's down to the very stop-start nature of it, which means my heart rate wasn't experiencing sustained highs in the way that I got from cycling or running (huh - on preview, have just seen koahiatamadl mention something similar about gardening - interesting. I also wondered whether the naturally relaxing sights and sounds of nature had some kind of prophylactic effect, but who knows how you'd ever measure that).
* Diary keeping is particularly useful because of the 'post-exertional' part of PEM - very often the kickback from 'overdoing it' doesn't come until a couple of days later and you feel great at the time. Diarising can help to tie up cause and effect. Also, while we're on PEM, 'malaise' is often more than just fatigue - I feel like I've got a virus again, start sneezing, my throat is swollen, I feel like I've got a bad hangover, and I often get a real nosedive in my mental health for a day or so, which magically pings back to normal again once I've recovered from the PEM. Some people call PEM 'post exertional symptom exacerbation' for this reason.
* Chairs and stools everywhere. As jeszac says, showering can be exhausting so make sure you have a chair in the shower, and when you're done, wrap yourself in towels and have a lie down before you tackle getting dressed. A chair in the kitchen or somewhere that you can do food prep while seated. Another one next to where you have to hang out laundry. And so on. (This was all particularly necessary for me because I live alone so there was nobody else to do these chores, YMMV if you have someone else who can take some of them on). If someone stops you in the street to chat, don't be afraid to sit on a nearby wall. Being upright is surprisingly hard.
* Some people like using wearables to track stuff like heartrate, sleep, heart rate variability, etc. I got a cheap 2nd hand Garmin Vivoactive 4 from Marketplace because Garmins have a feature called 'body battery' which kind of synthesises all those things and gives you a score for how much it thinks you have in the tank - a lot of long covidy people are big fans of it. In the end, I felt it was pretty hit-or-miss - the only times it ever told me I had 100% body battery were after nights when I felt like I'd barely slept and was totally shattered. But YMMV.
* Sleep - the feeling of being 'tired but wired' is often a feature of long covid or CFS - you're totally exhausted and desperate for rest, but your body feels like it's stuck in fight-or-flight and you just can't get to sleep. I found it helpful to take sleep aids (Nytol herbal) on the nights that I was especially tired, to break that cycle and get decent rest in.
posted by penguin pie at 8:38 AM on April 13, 2023 [11 favorites]
Can you share a bit about your current limitations? There's such a broad range of experiences. One person's sitting up for 15 minutes in bed is another person's walked 60 minutes instead of 45.
posted by ssg at 8:44 AM on April 13, 2023 [1 favorite]
posted by ssg at 8:44 AM on April 13, 2023 [1 favorite]
Best answer: Showers can be very draining - a shower chair with a back and armrests can be very helpful.
Phone calls can be very draining.
Loud noise; bright lights; flashing lights; crowds can be very draining.
posted by chariot pulled by cassowaries at 9:21 AM on April 13, 2023
Phone calls can be very draining.
Loud noise; bright lights; flashing lights; crowds can be very draining.
posted by chariot pulled by cassowaries at 9:21 AM on April 13, 2023
Response by poster: Currently, if I stand for for a minute or two I have to sit or lie down for an hour. If I inch around really slowly in a rolling chair I can do very basic things close to my body. Six days ago I could walk around and do stuff, but it was getting slowly worse for months. Sharp downturn six days ago. I'm going to be Very Clear with the doctor in about five minutes. He did a gazillion tests, and I do have epstein barr reactivation (and covid three months ago); he's pretty good. I'm very much in "being gentle with myself emergency mode."
posted by zeek321 at 9:26 AM on April 13, 2023 [2 favorites]
posted by zeek321 at 9:26 AM on April 13, 2023 [2 favorites]
Best answer: Ewf, that sounds really rough, I'm sorry. The rule of thumb is that you should try and find a level of activity that doesn't exacerbate your symptoms, and stay there for a while. Once you've done that for a bit, try extending a tiny bit at a time and then wait a few days, see what happens.
So given your current symptoms, you probably shouldn't stand at all except when absolutely necessary (in order to eg. use the toilet), and perhaps also try and avoid the inching round in a rolling chair/doing things close to your body as much as you can, too. Just lie still, as much as you can. Obviously that runs up against the requirements of many of our lives, and the mental health challenges of being so restricted. But that would be the ideal.
FWIW, I got presumed Covid in March 2020 and after that was somewhat limited (went from running 3 times a week to managing a very slow 10 minute walk a day). Then in Nov 2020 I had a crash that lasted about 2 weeks, where I was suddenly much worse (struggling to shower, sitting on the floor to hang out laundry and having to rest my arms after hanging every garment out etc.). But I did come back out of that crash. I'll be hoping for you that this is a short-term crash, because they do happen.
posted by penguin pie at 9:43 AM on April 13, 2023 [4 favorites]
So given your current symptoms, you probably shouldn't stand at all except when absolutely necessary (in order to eg. use the toilet), and perhaps also try and avoid the inching round in a rolling chair/doing things close to your body as much as you can, too. Just lie still, as much as you can. Obviously that runs up against the requirements of many of our lives, and the mental health challenges of being so restricted. But that would be the ideal.
FWIW, I got presumed Covid in March 2020 and after that was somewhat limited (went from running 3 times a week to managing a very slow 10 minute walk a day). Then in Nov 2020 I had a crash that lasted about 2 weeks, where I was suddenly much worse (struggling to shower, sitting on the floor to hang out laundry and having to rest my arms after hanging every garment out etc.). But I did come back out of that crash. I'll be hoping for you that this is a short-term crash, because they do happen.
posted by penguin pie at 9:43 AM on April 13, 2023 [4 favorites]
Best answer: Oh, also - if standing is a big issue for you, make sure your doctor is assessing you for POTS, which often comes with CFS. It is at least one of the things that, while not necessarily curable, at least comes with a list of 'things that can help', like getting enough fluids and salt, wearing compression garments etc.
posted by penguin pie at 9:45 AM on April 13, 2023 [3 favorites]
posted by penguin pie at 9:45 AM on April 13, 2023 [3 favorites]
Best answer: Personally I make a lot of use of a heart monitor. There are a couple of things I do that work for me:
* I try to keep the HR under a very low upper limit. If it's heading up there I should sit down/ lie down / stop watching TV / ask friends to leave. After using the toilet I sit there until my HR returns to normality before leaving the bathroom.
* I use the monitor to measure how much "work" different things are, judging by how much they raise my HR (even if it's staying under the limit). So for me, YouTube is better than TV and reading books is much better than YouTube.
I tried some pacing advice that said to pace by sitting down to do things, but in my case that makes it worse, because it's so tempting to do more things sitting down than I could if I stood up. Your rolling chair situation sounds similar. Any kind of trick for doing "more things" is just a recipe for making things worse, for me anyway.
I also learned that when pacing advice says "rest" or "take a break", for me that means lie down absolutely flat and do nothing, not the kind of restful activities that regular people might imagine.
An occupational therapist said, find a baseline level of activity that you can do every day for at least two weeks with no relapses/crashes. and only then increase activity by 10% at most (and stop if it produces a crash). "Do at most 60% of what you think you can do" was another useful piece of advice.
Seconding the advice to get assessed for POTS.
posted by quacks like a duck at 10:10 AM on April 13, 2023 [6 favorites]
* I try to keep the HR under a very low upper limit. If it's heading up there I should sit down/ lie down / stop watching TV / ask friends to leave. After using the toilet I sit there until my HR returns to normality before leaving the bathroom.
* I use the monitor to measure how much "work" different things are, judging by how much they raise my HR (even if it's staying under the limit). So for me, YouTube is better than TV and reading books is much better than YouTube.
I tried some pacing advice that said to pace by sitting down to do things, but in my case that makes it worse, because it's so tempting to do more things sitting down than I could if I stood up. Your rolling chair situation sounds similar. Any kind of trick for doing "more things" is just a recipe for making things worse, for me anyway.
I also learned that when pacing advice says "rest" or "take a break", for me that means lie down absolutely flat and do nothing, not the kind of restful activities that regular people might imagine.
An occupational therapist said, find a baseline level of activity that you can do every day for at least two weeks with no relapses/crashes. and only then increase activity by 10% at most (and stop if it produces a crash). "Do at most 60% of what you think you can do" was another useful piece of advice.
Seconding the advice to get assessed for POTS.
posted by quacks like a duck at 10:10 AM on April 13, 2023 [6 favorites]
Best answer: For those wondering specifically about the nature connection, there is empirical evidence that exposure to nature has real and measurable health benefits, especially on blood pressure and stress hormones. Even as little as looking at a tree through a window or gardening will help. Maybe you could try some focused "tree gazing" time? Here's a basic article and if you want to read more about it you could google "ecopsychology."
Also — I know it's not the same, but when I was recovering from a concussion I found that listening to an informative podcast that used calming tones of voice while lying with my eyes closed was a good balance between having enough distraction to not spiral into anxiety, without being draining enough that it would tire me out.
posted by 100kb at 10:15 AM on April 13, 2023 [1 favorite]
Also — I know it's not the same, but when I was recovering from a concussion I found that listening to an informative podcast that used calming tones of voice while lying with my eyes closed was a good balance between having enough distraction to not spiral into anxiety, without being draining enough that it would tire me out.
posted by 100kb at 10:15 AM on April 13, 2023 [1 favorite]
Best answer: Socializing is definitely extremely draining, especially with multiple people at once. I also found Zoom calls to be nearly intolerable. The doctors who recommend pacing have your best interests in mind. But please don't disregard any medical interventions.
A lot of people are having huge success with low dose naltrexone for ME/CFS but the doctors don't want to mention or prescribe it for reasons that remain unclear to me. There are also medications for POTS if you have it. It doesn't have to be that you just rest forever so please ask about medical options that could work for you beyond pacing/exercise. There is hope. Wishing you all the best.
posted by luckdragon at 10:45 AM on April 13, 2023 [1 favorite]
A lot of people are having huge success with low dose naltrexone for ME/CFS but the doctors don't want to mention or prescribe it for reasons that remain unclear to me. There are also medications for POTS if you have it. It doesn't have to be that you just rest forever so please ask about medical options that could work for you beyond pacing/exercise. There is hope. Wishing you all the best.
posted by luckdragon at 10:45 AM on April 13, 2023 [1 favorite]
Best answer: Thanks for the lin, 100kb, really interesting. The idea that being in nature is good for our mental health is pretty intuitive, but it seems like there's been less study into its effect on physical illness/symptoms. Gardening suits me well, but running in nature is impossible, so it's not just the being in nature that's protective/restorative, it's some interplay between physical exertion levels and natural environment.
The Brain on Nature podcast looks at the nature/health connection from the anecdotal POV of a woman who suffered a concussion/brain injury and discovered nature was far more restorative than anything else. It was also quite an easy listen and I think one of the things I listened to when I needed to rest while crashing, in case you like audio while resting, OP.
Also - there's a good article here on heart rate monitoring in CFS.
Tl;dr - work out 220 minus your age, then multiply it by 0.6 (or 0.5 if severely ill), and you should aim to keep your heartrate below that, but observe and tweak from there to find your own level. There's another, alternative formula in there that they suggest some women might find better than the first, but that's your entry-level calcuation.
posted by penguin pie at 11:28 AM on April 13, 2023 [1 favorite]
The Brain on Nature podcast looks at the nature/health connection from the anecdotal POV of a woman who suffered a concussion/brain injury and discovered nature was far more restorative than anything else. It was also quite an easy listen and I think one of the things I listened to when I needed to rest while crashing, in case you like audio while resting, OP.
Also - there's a good article here on heart rate monitoring in CFS.
Tl;dr - work out 220 minus your age, then multiply it by 0.6 (or 0.5 if severely ill), and you should aim to keep your heartrate below that, but observe and tweak from there to find your own level. There's another, alternative formula in there that they suggest some women might find better than the first, but that's your entry-level calcuation.
posted by penguin pie at 11:28 AM on April 13, 2023 [1 favorite]
Best answer: I'm severe and in payback from an appointment yesterday so I can't write a long answer, but:
- Here's the Bateman Horne Center's very good Crash Survival Guide.
- Tracking vitals morning and evening: pulse, BP, temp, O2 sat. (I'm too severe to wear a HR monitor, but some do that.) Paying close attention to patterns in these in relation to your activity & symptoms will eventually give you good insight of where you are.
- The app Visible is a way to start out with pacing, no wearable needed. It includes heart rate variability. I've been using it for three months and it's pretty good, but not better than my own tracking of vitals. I find it lags in prediction for me - it doesn't warn me of overdoing it as early and reliably as my vitals tracking and knowledge of my symptoms does.
- "Sharp downturn" is a *gigantic* flashing warning sign. I can't overstate this. You know you're feeling much worse, I know; limiting activity now is crucial, because a stepwise decline like this can sometimes prove permanent. Be gentle with yourself.
posted by jocelmeow at 12:02 PM on April 13, 2023 [2 favorites]
- Here's the Bateman Horne Center's very good Crash Survival Guide.
- Tracking vitals morning and evening: pulse, BP, temp, O2 sat. (I'm too severe to wear a HR monitor, but some do that.) Paying close attention to patterns in these in relation to your activity & symptoms will eventually give you good insight of where you are.
- The app Visible is a way to start out with pacing, no wearable needed. It includes heart rate variability. I've been using it for three months and it's pretty good, but not better than my own tracking of vitals. I find it lags in prediction for me - it doesn't warn me of overdoing it as early and reliably as my vitals tracking and knowledge of my symptoms does.
- "Sharp downturn" is a *gigantic* flashing warning sign. I can't overstate this. You know you're feeling much worse, I know; limiting activity now is crucial, because a stepwise decline like this can sometimes prove permanent. Be gentle with yourself.
posted by jocelmeow at 12:02 PM on April 13, 2023 [2 favorites]
Best answer: * http://www.cfsselfhelp.org/
The pacing tutorials there, and sign up for the very very cheap peer support course on pacing.
Get a smart watch that monitors heartrate, and preferably beeps somehow when you go over 100 - have a microbreak.
Very frequent, lie down, *eyes closed*, rests. It's ok, you only have to do it for a few minutes past the point of boredom (past, because if you're kind of adrenaline/cortisol/stress spiking to get things done, you need to give it a little bit to feel if underneath that you actually need to *rest*, but if you're relaxed and now want to do something, that's great, that was a long enough rest).
Scrolling on phone is not at all the same and not a substitute.
posted by Elysum at 4:07 PM on April 13, 2023 [1 favorite]
The pacing tutorials there, and sign up for the very very cheap peer support course on pacing.
Get a smart watch that monitors heartrate, and preferably beeps somehow when you go over 100 - have a microbreak.
Very frequent, lie down, *eyes closed*, rests. It's ok, you only have to do it for a few minutes past the point of boredom (past, because if you're kind of adrenaline/cortisol/stress spiking to get things done, you need to give it a little bit to feel if underneath that you actually need to *rest*, but if you're relaxed and now want to do something, that's great, that was a long enough rest).
Scrolling on phone is not at all the same and not a substitute.
posted by Elysum at 4:07 PM on April 13, 2023 [1 favorite]
Best answer: The first thing I find helps is to keep in mind the priority of my goals - so it can be really easy to wear myself out cleaning the kitchen and then end up without the energy to cook and eat, or really easy to wear myself out taking a walk and then not have the energy to look up when my next appointments are. I have to assume that I will stop being functional at any time without warning, and choose what to do accordingly. If I have a choice between making tea, hitting the bathroom, or making a phone call and I think I can do all three I still start with the phone call if it is urgent, or hitting the bathroom if it isn't, in case I end up on the floor in the hall, and two of the three can't be done. If I want to take a walk but it is critical I check my appointments so I don't miss the next one, checking the appointments has to happen before that walk.
Places to lie down help even more than chairs. During bad times I store comforters in the bathroom, as if someone is at risk of being stranded there, or having to rest there for a couple of hours before they can crawl off to bed, lolling on a layer of comforters with another one pulled over you is better than lolling on a the heap dumped out of the laundry basket, which in turn is better than lying on the floor trying to keep the cold tiles from sucking the warmth out of you using only a hand towel. In other rooms make sure there is floor space or a couch where you can go horizontal.
Do what you have to feel better, even if it seems absurd and makes you look weird. It is eccentric to sit on the floor instead of in a chair or to wear a woolly hat in the summer, but if you sit on the floor the blood doesn't pool in your legs, which means you may end up with just a bit more stamina, and if you are suffering from chills when everyone else says it is warm, the woolly hat could be what staves off a bat crash. Figure out what works for you. On the other hand try not to look eccentric in front of medical personnel as looking unconventional is likely to make them write you off. In front of friends or alone at home, screw appearances, do what you need to.
It helps to set things up for collapsing, so having a bottle of water, and empty drinking glass and your toothpaste and brush beside your bed means that if you have to crash for the day at 4 PM you can still brush your teeth and spit into the glass either when you collapse, when you wake up briefly in the middle of the night, and/or in the morning if the next day is going to leave you stuck in bed.
Look for the things that distress you - "I didn't get anything to eat but crackers...!" "It took me forty five minutes to get from my chair to my pain meds even though I was in pain so bad I couldn't think...!" and work out ways to make them possible when you have your lucid and functional times. Get some dried fruit, a rip top can of fish, and other stuff that hits different food groups that you can eat cold and leave it in a bag in the centre part of your home. Leave blister packs of your pain meds in different rooms to make sure one is within arms reach wherever you are. There are often simple solutions to solve your recurring failures. Attempting to go on as normal is likely to be a disaster. Forcing yourself to cook because you MUST eat can result in being too fatigued to eat, or even to fatigued to digest whatever food you get into you. If breakfast was a slice of bread, lunch time isn't your cue to compensate with a hot meal that takes so much work it knocks you flat on your butt, it's your cue to figure out what other food groups are possible with minimal effort and aim for a glass of milk and an apple.
Assume your memory is going to tank, but unpredictably, and get a memory system going where everything gets written down in one place. Then put it in the location you are most likely to see it, most frequently. For example it could get put on your bed on any day when you are up to getting out of it. If it's on your phone make it your phone desktop.
Learn to listen to your body. For example if you are craving sugar you need to be aware of it, because that is a signal that your brain is short of resources. You may not want to binge on sugar, of course, but the signal is your cue to try food, or salt, or fluid, or an un-stimulating environment, or rest, and to prepare for your executive functioning to let you down. Nausea, for example may indicate that your blood supply is being pulled from your stomach, and over heating and being dizzy may be the next step. If it seems awfully loud, your brain may be overloading. You need to get somewhere quiet. Looking after this kind of stuff promptly really helps you get little bits of energy and function, instead of just getting sandbagged.
Assume that you will be dangerously dizzy in all potentially hazardous situations. Check if you can make it across before you start crossing the street. Hang on all the way up or down when going up or down stairs, and even, if you detect some dizziness, sit down on the steps and walk down with your butt on one step and your feet on the next, sitting on each step all the way up. (You go backwards to ascend. ) If you risk driving plan for places where you can pull over, and do that and then assess if it is safe to continue.
If you run errands plan on stopping frequently, and eating and drinking while you are out. Stopping at the hospital coffee shop and sitting down for tea and a biscuit and be the difference between the day after your hospital appointment leaving you stuck in bed, or one where you can drift slowly around the house, putting odd things away, cycling the laundry and managing to read a bit. Don't burn energy racing for home if you can help it, power down and refresh before starting the return journey.
Changing position is the next best thing to exercise when you can't exercise. If you have the choice of lying down or sitting on your office chair with wheels the choice is both, alternating. If you have to lie down all day and can only get up to hit the bathroom, you will do better if you lie down in different locations during the day, in your bed, on your couch, in a warm bath, on the bathroom floor, and on your partner's bed while they chat with you about their day and that interesting podcast they were listening to.
Fresh air is good, if you can get it. If you can't get outside, sitting in your armchair beside an open window can help restore your energy, sometimes.
Comfort food and comfort clothing and comfort pastimes, like re-watching your favourite movie are all good. But at the same time, it is good for you to experience some novelty. So look for media that is new to you and yet low effort, not just random net-surfing of whatever is the most attention grabbing. Set goals, like listening to a genre of music that is completely unfamiliar to you or watching drawing videos.
Try slow TV, where you can glaze at a completely un-stressful video of a barge going down a canal between trees and European architecture, or something similar that works for you. It won't matter if you blank out and miss half an hour of but it will give you a change of perspective, without taking up the kind of mental resources that things like reading MetaFilter does. You don't have to think about any of it, or decode anything or react to anything. You can just notice how the scene slowly changes.
You want good stuff for your brain to unpack and repack while you are dreaming. New images of a canal in Holland, or an analysis of how to get the hulking shape of a mech to look three dimensional will give your brain something to work on other than the struggle to function and the anxiety about being non-functional and this will make you sleep better, which is critical to having energy.
Rock bottom expectations help. If you washed one dish today, you DID something, which makes you several steps up from a paraplegic or a corpse and you may even be operating at a level of functioning one step up from a new parent if they have a colicy baby.
Keep in mind that for many people severe fatigue gets better, and that even if it doesn't you can adapt to this, and get skillful at managing it, and thus improve your quality of life. Within those two facts you have a LOT of room for hope.
posted by Jane the Brown at 4:11 PM on April 13, 2023 [6 favorites]
Places to lie down help even more than chairs. During bad times I store comforters in the bathroom, as if someone is at risk of being stranded there, or having to rest there for a couple of hours before they can crawl off to bed, lolling on a layer of comforters with another one pulled over you is better than lolling on a the heap dumped out of the laundry basket, which in turn is better than lying on the floor trying to keep the cold tiles from sucking the warmth out of you using only a hand towel. In other rooms make sure there is floor space or a couch where you can go horizontal.
Do what you have to feel better, even if it seems absurd and makes you look weird. It is eccentric to sit on the floor instead of in a chair or to wear a woolly hat in the summer, but if you sit on the floor the blood doesn't pool in your legs, which means you may end up with just a bit more stamina, and if you are suffering from chills when everyone else says it is warm, the woolly hat could be what staves off a bat crash. Figure out what works for you. On the other hand try not to look eccentric in front of medical personnel as looking unconventional is likely to make them write you off. In front of friends or alone at home, screw appearances, do what you need to.
It helps to set things up for collapsing, so having a bottle of water, and empty drinking glass and your toothpaste and brush beside your bed means that if you have to crash for the day at 4 PM you can still brush your teeth and spit into the glass either when you collapse, when you wake up briefly in the middle of the night, and/or in the morning if the next day is going to leave you stuck in bed.
Look for the things that distress you - "I didn't get anything to eat but crackers...!" "It took me forty five minutes to get from my chair to my pain meds even though I was in pain so bad I couldn't think...!" and work out ways to make them possible when you have your lucid and functional times. Get some dried fruit, a rip top can of fish, and other stuff that hits different food groups that you can eat cold and leave it in a bag in the centre part of your home. Leave blister packs of your pain meds in different rooms to make sure one is within arms reach wherever you are. There are often simple solutions to solve your recurring failures. Attempting to go on as normal is likely to be a disaster. Forcing yourself to cook because you MUST eat can result in being too fatigued to eat, or even to fatigued to digest whatever food you get into you. If breakfast was a slice of bread, lunch time isn't your cue to compensate with a hot meal that takes so much work it knocks you flat on your butt, it's your cue to figure out what other food groups are possible with minimal effort and aim for a glass of milk and an apple.
Assume your memory is going to tank, but unpredictably, and get a memory system going where everything gets written down in one place. Then put it in the location you are most likely to see it, most frequently. For example it could get put on your bed on any day when you are up to getting out of it. If it's on your phone make it your phone desktop.
Learn to listen to your body. For example if you are craving sugar you need to be aware of it, because that is a signal that your brain is short of resources. You may not want to binge on sugar, of course, but the signal is your cue to try food, or salt, or fluid, or an un-stimulating environment, or rest, and to prepare for your executive functioning to let you down. Nausea, for example may indicate that your blood supply is being pulled from your stomach, and over heating and being dizzy may be the next step. If it seems awfully loud, your brain may be overloading. You need to get somewhere quiet. Looking after this kind of stuff promptly really helps you get little bits of energy and function, instead of just getting sandbagged.
Assume that you will be dangerously dizzy in all potentially hazardous situations. Check if you can make it across before you start crossing the street. Hang on all the way up or down when going up or down stairs, and even, if you detect some dizziness, sit down on the steps and walk down with your butt on one step and your feet on the next, sitting on each step all the way up. (You go backwards to ascend. ) If you risk driving plan for places where you can pull over, and do that and then assess if it is safe to continue.
If you run errands plan on stopping frequently, and eating and drinking while you are out. Stopping at the hospital coffee shop and sitting down for tea and a biscuit and be the difference between the day after your hospital appointment leaving you stuck in bed, or one where you can drift slowly around the house, putting odd things away, cycling the laundry and managing to read a bit. Don't burn energy racing for home if you can help it, power down and refresh before starting the return journey.
Changing position is the next best thing to exercise when you can't exercise. If you have the choice of lying down or sitting on your office chair with wheels the choice is both, alternating. If you have to lie down all day and can only get up to hit the bathroom, you will do better if you lie down in different locations during the day, in your bed, on your couch, in a warm bath, on the bathroom floor, and on your partner's bed while they chat with you about their day and that interesting podcast they were listening to.
Fresh air is good, if you can get it. If you can't get outside, sitting in your armchair beside an open window can help restore your energy, sometimes.
Comfort food and comfort clothing and comfort pastimes, like re-watching your favourite movie are all good. But at the same time, it is good for you to experience some novelty. So look for media that is new to you and yet low effort, not just random net-surfing of whatever is the most attention grabbing. Set goals, like listening to a genre of music that is completely unfamiliar to you or watching drawing videos.
Try slow TV, where you can glaze at a completely un-stressful video of a barge going down a canal between trees and European architecture, or something similar that works for you. It won't matter if you blank out and miss half an hour of but it will give you a change of perspective, without taking up the kind of mental resources that things like reading MetaFilter does. You don't have to think about any of it, or decode anything or react to anything. You can just notice how the scene slowly changes.
You want good stuff for your brain to unpack and repack while you are dreaming. New images of a canal in Holland, or an analysis of how to get the hulking shape of a mech to look three dimensional will give your brain something to work on other than the struggle to function and the anxiety about being non-functional and this will make you sleep better, which is critical to having energy.
Rock bottom expectations help. If you washed one dish today, you DID something, which makes you several steps up from a paraplegic or a corpse and you may even be operating at a level of functioning one step up from a new parent if they have a colicy baby.
Keep in mind that for many people severe fatigue gets better, and that even if it doesn't you can adapt to this, and get skillful at managing it, and thus improve your quality of life. Within those two facts you have a LOT of room for hope.
posted by Jane the Brown at 4:11 PM on April 13, 2023 [6 favorites]
Best answer: Definitely consider buying a rollator (wheeled walking frame) or a manual wheelchair, so that you can sit down while waiting for the kettle to boil; while queuing at the doctor's office etc etc.
These ones are really good (height adjustible handles; also very strong but light enough to lift in/out of a car boot)
https://www.byacre.com/
posted by chariot pulled by cassowaries at 7:34 PM on April 13, 2023
These ones are really good (height adjustible handles; also very strong but light enough to lift in/out of a car boot)
https://www.byacre.com/
posted by chariot pulled by cassowaries at 7:34 PM on April 13, 2023
Best answer: Things that help cope with severe/extreme fatigue:
A bed that you can electronically raise the back of, so you can sit up in bed; OR pillows/a back support/a wedge to prop you up so that you can sit up in bed;
a table that goes over your bed, for drinks, snacks, laptop etc etc;
a doorbell that lets you talk to/see people who are at your front door without having to get out of bed;
a shower chair;
a wheeled walking frame/rollator; manual wheelchair; or power wheelchair;
noise cancelling headphones (background noise can be very draining);
If you have to do 60 minutes of activity, it's significantly less exhausting to do
5 minutes of activity + 1 hour rest, rinse lather repeat over the course of the day
than it is to do 60 minutes of nonstop activity + 12 hours of nonstop resting
posted by chariot pulled by cassowaries at 7:44 PM on April 13, 2023
A bed that you can electronically raise the back of, so you can sit up in bed; OR pillows/a back support/a wedge to prop you up so that you can sit up in bed;
a table that goes over your bed, for drinks, snacks, laptop etc etc;
a doorbell that lets you talk to/see people who are at your front door without having to get out of bed;
a shower chair;
a wheeled walking frame/rollator; manual wheelchair; or power wheelchair;
noise cancelling headphones (background noise can be very draining);
If you have to do 60 minutes of activity, it's significantly less exhausting to do
5 minutes of activity + 1 hour rest, rinse lather repeat over the course of the day
than it is to do 60 minutes of nonstop activity + 12 hours of nonstop resting
posted by chariot pulled by cassowaries at 7:44 PM on April 13, 2023
Best answer: Fatigue = auditory processing (listening) becomes more difficult and also more exhausting
so closed captions /subtitles are your friend for watching TV or films.
posted by chariot pulled by cassowaries at 9:00 PM on April 13, 2023
so closed captions /subtitles are your friend for watching TV or films.
posted by chariot pulled by cassowaries at 9:00 PM on April 13, 2023
Best answer: Fatigue = reading becomes more exhausting.
If you can use your laptop, ipad or Kindle to get GIANT font
(24 point font to 36 point font), that makes reading less exhausting than it would be with normal-sized font (10 point font, 12 point font)
Even if you can read normal sized font "comfortably" without reading glasses, it's still more mentally exhausting than giant font.
posted by chariot pulled by cassowaries at 9:04 PM on April 13, 2023 [1 favorite]
If you can use your laptop, ipad or Kindle to get GIANT font
(24 point font to 36 point font), that makes reading less exhausting than it would be with normal-sized font (10 point font, 12 point font)
Even if you can read normal sized font "comfortably" without reading glasses, it's still more mentally exhausting than giant font.
posted by chariot pulled by cassowaries at 9:04 PM on April 13, 2023 [1 favorite]
Best answer: With the interesting points about the restorative powers of nature, for times when you can’t get outdoors, let me recommend the ABC Nature Track radio program, which also has youtube videos in some cases.
posted by ec2y at 5:11 AM on April 14, 2023 [1 favorite]
posted by ec2y at 5:11 AM on April 14, 2023 [1 favorite]
Best answer: Keep room temperature snacks in either original packaging or sealed containers (insect proof!) on a table or drawers next to your bed, for when you crash/splat in bed and can't manage to walk to the kitchen.
These could be for example:
nuts;
roasted seaweed/nori;
chocolate;
muesli bars;
small tins of tuna/salmon with a ringpull top plus a disposable spoon;
packets of rice crackers;
packets of potato chips
posted by chariot pulled by cassowaries at 1:29 AM on April 15, 2023
These could be for example:
nuts;
roasted seaweed/nori;
chocolate;
muesli bars;
small tins of tuna/salmon with a ringpull top plus a disposable spoon;
packets of rice crackers;
packets of potato chips
posted by chariot pulled by cassowaries at 1:29 AM on April 15, 2023
« Older Can you adapt to running shoes that hurt at first? | European eSIM for cellphone data Newer »
This thread is closed to new comments.
So the mental and emotional demands of socializing also zap energy that has to be budgeted for. They plan time to rest or nap on the day prior to the social engagement and they look at their family diary and consider their social commitments when planning downtime - not more than one thing per day, no 'big' things on consecutive days and so on.
posted by koahiatamadl at 7:36 AM on April 13, 2023 [5 favorites]