Coping with ongoing fatigue
July 19, 2018 6:16 AM Subscribe
Looking for ideas on managing my life while coping with intermittent fatigue.
I previously asked about fatigue focusing primarily on what to focus on with my doc. I'm working with her on that now.
I have good days and bad days. I need to work on managing my life so that while this is getting resolved (hopefully) I still maintain relationships and make progress on things like household clutter and hobbies that I care about.
I've tried limiting my social obligations but that has proved isolating and has led to depression, which does not help with the fatigue. I also hate feeling like I'm not making any progress in things like playing musical instruments, art skills, and other hobbies.
What seems to work best so far - Avoiding the things that seem to cause fatigue (tricky). Casual one-on-one lunches, movies, having people over (sometimes - sometimes it sparks more fatigue if I stress out over cleaning and entertaining), low-key household tasks. It would help immensely if I were an organized person and could stick to routine consistently - then I could just have a list of small tasks I did every day/week - sketch a little, clean a little, call someone on the phone or have coffee. (Complication - Adult ADD).
Question - how can I thrive at life while also coping with fatigue? Bonus: have you learned to be good at routines after repeated failed attempts to routine your entire life, and how?
I previously asked about fatigue focusing primarily on what to focus on with my doc. I'm working with her on that now.
I have good days and bad days. I need to work on managing my life so that while this is getting resolved (hopefully) I still maintain relationships and make progress on things like household clutter and hobbies that I care about.
I've tried limiting my social obligations but that has proved isolating and has led to depression, which does not help with the fatigue. I also hate feeling like I'm not making any progress in things like playing musical instruments, art skills, and other hobbies.
What seems to work best so far - Avoiding the things that seem to cause fatigue (tricky). Casual one-on-one lunches, movies, having people over (sometimes - sometimes it sparks more fatigue if I stress out over cleaning and entertaining), low-key household tasks. It would help immensely if I were an organized person and could stick to routine consistently - then I could just have a list of small tasks I did every day/week - sketch a little, clean a little, call someone on the phone or have coffee. (Complication - Adult ADD).
Question - how can I thrive at life while also coping with fatigue? Bonus: have you learned to be good at routines after repeated failed attempts to routine your entire life, and how?
Well, a few things. What does "thrive" really mean? It sounds like you have friends and hobbies and a job. I would say you are doing better than probably 50% of people out there. Congrats!
Most, if not all people I know, are very tired after work and when they wake up in the morning. Feeling tired is pretty common. Most people by my standards are also pretty high functioning.
What does thriving mean to you? If you are comparing yourself to people on facebook going on 5K runs and taking yoga pictures - you should know that most social media is fictional pagentry and where those people may look like they are "thriving" - they probably have large, similar problems hidden away.
If you read one book a month - you would have read 11 more books than I read last year. I'd call that thriving.
Bonus: The one routine I've fixed in my life was keeping my phone by my front door - I'm not allowed to look at it until I leave in the morning! I think routines need to be an outside-in system. Fixing routines usually comes from changing the environment, not yourself. If you want a routine where you go to the gym after work, pack your gym bag and just make that your routine, no skip days, no excuses.
posted by bbqturtle at 6:27 AM on July 19, 2018 [3 favorites]
Most, if not all people I know, are very tired after work and when they wake up in the morning. Feeling tired is pretty common. Most people by my standards are also pretty high functioning.
What does thriving mean to you? If you are comparing yourself to people on facebook going on 5K runs and taking yoga pictures - you should know that most social media is fictional pagentry and where those people may look like they are "thriving" - they probably have large, similar problems hidden away.
If you read one book a month - you would have read 11 more books than I read last year. I'd call that thriving.
Bonus: The one routine I've fixed in my life was keeping my phone by my front door - I'm not allowed to look at it until I leave in the morning! I think routines need to be an outside-in system. Fixing routines usually comes from changing the environment, not yourself. If you want a routine where you go to the gym after work, pack your gym bag and just make that your routine, no skip days, no excuses.
posted by bbqturtle at 6:27 AM on July 19, 2018 [3 favorites]
Best answer: “No excuses [for skipping a day of exercise]” is not a helpful thing to say to someone experiencing longterm ongoing fatigue, and neither is “most people are tired after work”. Balancing life and health and hobbies and habits and work is hard for anyone but harder for chronically ill people, because there’s basically fewer hours in the day we can be active rather than resting. We are literally biologically limited.
OP, you’re taking some good steps in identifying social gatherings that don’t use up too much energy. One thing that I’ve noticed for myself is that doing something tiring multiple days in a row (social outing, long walk, stressful work, tiring chores) will end badly, but if I allow for rest days in between where I do simpler and slower things it’s less likely to snowball into a big fatigue crash. Also, building routine is a good idea, as long as you remember to build routine you can handle most days, not just on your best or highest energy days.
Thriving is something I’ve had to redefine personally. I can’t work full time, so my career isn’t what I expected. My hobbies have been adjusted and sometimes go more slowly but definitely still happen. I still have goals, and they’re still exciting, and I still have a good life. But every life has limits: some people work 60 hours a week! Some people single parent! I don’t, I just am sick. But I do what I can to have a full life, and also have a therapist experienced with seeing folks with chronic illnesses who helps point out when I’m having unreasonable expectations for myself.
posted by mismatched at 8:30 AM on July 19, 2018 [13 favorites]
OP, you’re taking some good steps in identifying social gatherings that don’t use up too much energy. One thing that I’ve noticed for myself is that doing something tiring multiple days in a row (social outing, long walk, stressful work, tiring chores) will end badly, but if I allow for rest days in between where I do simpler and slower things it’s less likely to snowball into a big fatigue crash. Also, building routine is a good idea, as long as you remember to build routine you can handle most days, not just on your best or highest energy days.
Thriving is something I’ve had to redefine personally. I can’t work full time, so my career isn’t what I expected. My hobbies have been adjusted and sometimes go more slowly but definitely still happen. I still have goals, and they’re still exciting, and I still have a good life. But every life has limits: some people work 60 hours a week! Some people single parent! I don’t, I just am sick. But I do what I can to have a full life, and also have a therapist experienced with seeing folks with chronic illnesses who helps point out when I’m having unreasonable expectations for myself.
posted by mismatched at 8:30 AM on July 19, 2018 [13 favorites]
Best answer: I find it helpful to have lists of easy things to do to make progress in different areas so I don't have to do the work of figuring out what to do every time, I can look at my list of people to text weekly, pick one, and maintain a social connection. Or see a list of hobby projects and do one for a little while.
And yeah, give yourself a break and scale your expectations way back. I have to remind myself a lot that I am not $friend, and I can't keep up with their social calendar. The goal is to have a life that suits me, as I am.
posted by momus_window at 9:22 AM on July 19, 2018 [3 favorites]
And yeah, give yourself a break and scale your expectations way back. I have to remind myself a lot that I am not $friend, and I can't keep up with their social calendar. The goal is to have a life that suits me, as I am.
posted by momus_window at 9:22 AM on July 19, 2018 [3 favorites]
Best answer: You literally can't accomplish as much when you're having a string of bad days. I usually cook at home so I can manage my nutrition, but there are weeks when I can't, so the freezer has some frozen meals, homemade and from Trader Joes, etc. I have a fair amount of food in the house because there can be 2 weeks when a trip to the grocery isn't going to happen. Shopped yesterday evening, 2 stores, got the groceries put away, and was exhausted, but I have fresh veg. My wardrobe is stuff that pretty much works together, so I can pull on a top, skirt, tights and clogs with no planning or worrying about what's clean. My hair is long-ish because going to the stylist takes energy, so I go 2x/ year. I do a French braid or something similar, takes a couple minutes and I don't have to touch it all day.
Hire a cleaner if you can. I prioritize many other things over cleaning, so there are stretches of time when the house is cluttered and dusty. The bathroom is clean, the kitchen is clean enough, and I've learned to deal.
ADHD makes it a lot harder. I still start projects and am unable to complete them, so the little screw from the laptop is long gone, the kimchi got too funky, and I don't know if that great skirt is going to be hemmed this decade. I have to throttle my impulse to bring home the chair that just needs a little work, because I may never be able to do it. When I was healthier, I could go on binges of getting shit done, it's been years since that was an option.
There are tons of sites and books about how to be organized and the trick is to make a system ans stick to it. ADHD makes you want a new, better system, ignore that thought unless it a really useful change, and even then, be wary. Set as many bills on autopay as possible.
I find that routine carries me through bad days/ weeks. Get up at the same time, the coffeemaker made the coffee because that's one task I will always set up the night before. I wear a fitbit because I want that vibration on my wrist when I meet my daily goal, which is lower than it would have been 5 years ago, much lower than 10 years ago. On icy days, I sometimes just go walk at Lowes or Home Depot because it's inside and not very far away and I can't risk a fall. Try to build friendship maintenance into that routine; sometimes it will be a phone call because lunch is just not going to happen.
posted by theora55 at 10:42 AM on July 19, 2018 [5 favorites]
Hire a cleaner if you can. I prioritize many other things over cleaning, so there are stretches of time when the house is cluttered and dusty. The bathroom is clean, the kitchen is clean enough, and I've learned to deal.
ADHD makes it a lot harder. I still start projects and am unable to complete them, so the little screw from the laptop is long gone, the kimchi got too funky, and I don't know if that great skirt is going to be hemmed this decade. I have to throttle my impulse to bring home the chair that just needs a little work, because I may never be able to do it. When I was healthier, I could go on binges of getting shit done, it's been years since that was an option.
There are tons of sites and books about how to be organized and the trick is to make a system ans stick to it. ADHD makes you want a new, better system, ignore that thought unless it a really useful change, and even then, be wary. Set as many bills on autopay as possible.
I find that routine carries me through bad days/ weeks. Get up at the same time, the coffeemaker made the coffee because that's one task I will always set up the night before. I wear a fitbit because I want that vibration on my wrist when I meet my daily goal, which is lower than it would have been 5 years ago, much lower than 10 years ago. On icy days, I sometimes just go walk at Lowes or Home Depot because it's inside and not very far away and I can't risk a fall. Try to build friendship maintenance into that routine; sometimes it will be a phone call because lunch is just not going to happen.
posted by theora55 at 10:42 AM on July 19, 2018 [5 favorites]
It looks like you might already do this, but in case you aren't yet in college one of my favorite things was getting friends to come over and chat and keep me company as I did chores. Groceries are best for this, since they probably need to grocery shop too and can either go home after or keep their goods in a bag in your fridge till they need to go. Big batch freezer/meal prep cooking is also very effective since you're providing the kitchen and can assign specific people to clean up after. Or like having people over as you do a deep clean of your closet to see if they want any of your old clothes.
How are you with online contact? You can use something like rabb.it to watch movies with friends. I like groupchats too as low-energy/low-effort contact: if you're lucky the other groupchat members keep each other busy so you can just chill and chime in when you have the energy.
posted by storytam at 8:59 PM on July 19, 2018
How are you with online contact? You can use something like rabb.it to watch movies with friends. I like groupchats too as low-energy/low-effort contact: if you're lucky the other groupchat members keep each other busy so you can just chill and chime in when you have the energy.
posted by storytam at 8:59 PM on July 19, 2018
Best answer: Discover your limits, then do 80%. Keep doing things, but at sustainable levels.
After 2 hours socializing, I'm done for the day. I let my friends know those limits and ask for their help keeping within them. I've emailed My current health condition limits me to 90-minute interactions.
I can walk for 10 minutes on a treadmill (or with my rolling walker inside an A/C store). Well I can walk for 20, but then that's it. So I walk for 10 minutes, and if it's a good day, I will walk again for 10 minutes.
There's a push through it societal message that's irrelevant to you right now. I hope you have some useful medical answers soon.
posted by Jesse the K at 3:28 PM on July 20, 2018 [1 favorite]
After 2 hours socializing, I'm done for the day. I let my friends know those limits and ask for their help keeping within them. I've emailed My current health condition limits me to 90-minute interactions.
I can walk for 10 minutes on a treadmill (or with my rolling walker inside an A/C store). Well I can walk for 20, but then that's it. So I walk for 10 minutes, and if it's a good day, I will walk again for 10 minutes.
There's a push through it societal message that's irrelevant to you right now. I hope you have some useful medical answers soon.
posted by Jesse the K at 3:28 PM on July 20, 2018 [1 favorite]
Response by poster: Yeah, that's a problem. When I start to feel better I try to make up for lost time and then oh boy does it ever come back and bite me in the ass. The thing is when I feel better I start thinking maybe the whole thing was in my head and I'm a malingerer who has been slacking off. And I push myself more. And then there I am hitting the brick wall again.
I have a cleaner who comes in every two weeks, and a trainer who customizes workouts based on my energy levels. Something I recently realized is that I need to do everything in bite-sized chunks - ex. don't clean the entire bookcase, clean one shelf. That feels frustrating and less enjoyable .. but the other approach leaves me with half-done projects and a messy home while I'm feeling like ass, and that makes me feel more anxious and frustrated.
Most of my friends have some combo of intense jobs, kids and S/Os and don't really have time to hang out with me while I do chores. But it absolutely does help and it's worth asking about now and then just in case.
posted by bunderful at 5:51 PM on July 20, 2018
I have a cleaner who comes in every two weeks, and a trainer who customizes workouts based on my energy levels. Something I recently realized is that I need to do everything in bite-sized chunks - ex. don't clean the entire bookcase, clean one shelf. That feels frustrating and less enjoyable .. but the other approach leaves me with half-done projects and a messy home while I'm feeling like ass, and that makes me feel more anxious and frustrated.
Most of my friends have some combo of intense jobs, kids and S/Os and don't really have time to hang out with me while I do chores. But it absolutely does help and it's worth asking about now and then just in case.
posted by bunderful at 5:51 PM on July 20, 2018
Best answer: It sounds to me like you are doing well at this. There just aren't shortcuts for this. It is goint to take time to figure out what is going to work for you, and it will evolve.
Use the simplest systems that work for you for your most basic self care needs. The fewer things that you have to actively remember, well, It helps for the normal days and it can be a lifesaver when you're at your worst or there's a crisis. (Putting together medications into weekly pill minders both ensures that I have everything and can put in refills before I run out, and it means that I don't have to actually remember whether or not I've taken my pills.)
Prioritize and balance needs vs wants. (I want to just sit and watch videos right now, but I need to have clean clothes tomorrow, and I would regret not doing a load of laundry.)
Take occasional risks that push your limits, but be honest with yourself about the tradeoffs that you're making. Sometimes the cost is too high.
Do whatever works for you, however peculiar it might seem. Ask for help when you need it, and be specific to make it easier for others to help you. Expect entropy and consider potential weak points, and plan as best you can for things to go very wrong from time to time. Work with who you are in your current situaiton, not who you aspire to be.
I'm not very good at anything but the most basic of routine, and I set alarms for the important stuff. It is unrealistic to expect that I will turn into a person who enjoys it, but if I go to be and get up at the same times, I know that I am more functional and enjoy my life more.
posted by monopas at 8:31 PM on July 20, 2018 [2 favorites]
Use the simplest systems that work for you for your most basic self care needs. The fewer things that you have to actively remember, well, It helps for the normal days and it can be a lifesaver when you're at your worst or there's a crisis. (Putting together medications into weekly pill minders both ensures that I have everything and can put in refills before I run out, and it means that I don't have to actually remember whether or not I've taken my pills.)
Prioritize and balance needs vs wants. (I want to just sit and watch videos right now, but I need to have clean clothes tomorrow, and I would regret not doing a load of laundry.)
Take occasional risks that push your limits, but be honest with yourself about the tradeoffs that you're making. Sometimes the cost is too high.
Do whatever works for you, however peculiar it might seem. Ask for help when you need it, and be specific to make it easier for others to help you. Expect entropy and consider potential weak points, and plan as best you can for things to go very wrong from time to time. Work with who you are in your current situaiton, not who you aspire to be.
I'm not very good at anything but the most basic of routine, and I set alarms for the important stuff. It is unrealistic to expect that I will turn into a person who enjoys it, but if I go to be and get up at the same times, I know that I am more functional and enjoy my life more.
posted by monopas at 8:31 PM on July 20, 2018 [2 favorites]
The most helpful thing is to only compare yourself with...yourself. That’s important for everyone, but it’s critical for those of us who aren’t running at 100%.
The other thing to do is let go some perfectionist tendencies. Everything will not be the same as if you were at your best. That math doesn’t add up, and the new math is awkward and hard to learn. Can I deal with vacuuming almost never if I get to bathe everyday? Is it okay to get take out so I can get through PT? :)
You will find your way by prioritizing, being flexible, and making some trade-offs here and there. You can do this.
posted by Kalatraz at 10:54 PM on July 20, 2018 [1 favorite]
The other thing to do is let go some perfectionist tendencies. Everything will not be the same as if you were at your best. That math doesn’t add up, and the new math is awkward and hard to learn. Can I deal with vacuuming almost never if I get to bathe everyday? Is it okay to get take out so I can get through PT? :)
You will find your way by prioritizing, being flexible, and making some trade-offs here and there. You can do this.
posted by Kalatraz at 10:54 PM on July 20, 2018 [1 favorite]
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Before I was diagnosed and treated, I was down to one thing a day. I could work, or I could go to a medical appointment, or I could have lunch with someone, or I could clean some of the house. Having to also go out at night for a social obligation made me cry even with the absolutely mandatory pre-event nap. That was the reality and there was zero benefit to pretending otherwise, because that only resulted in being disappointed with myself.
Hoard your spoons. Make a list of the one thing you need to do on a given day to keep your life on track. Do that one thing that day.
posted by DarlingBri at 6:24 AM on July 19, 2018 [15 favorites]