Managing fatigue
June 7, 2019 11:45 AM Subscribe
After undergoing a very stressful time at work about 4 years ago, I developed a chronic illness by having (what I now know as) a flare of severe fatigue over several days. What are your strategies for managing your illness and its impact on your life?
Things have changed since then: I got a diagnosis of mild fibromyalgia from a rheumatologist, switched family doctors from an old male doctor who I had to yell at to take my pain seriously to an all-female doctor team, am on a medication that addresses both fibro pain and depression. My work is very accommodating (I occasionally go home early or work from home), my degree in process is very flexible, and I am trying hard not to feel guilty for being "lazy" when I need to sleep.
However, I need a strategy to better take care of my health so I don't overextend myself and then have to sleep it off for several days. I am very fortunate to not have pain unless I'm very tired. My biggest issue is fatigue, which can require 12-15 hours of sleep on weekends. I also commute an hour to work, so I get up at 7am 4 days a week and am back home by 6pm, which means I don't have that much time in the evening before I want to sleep. I can't sleep as much as I want to on weekdays, unless I want to do nothing but work, get home and chill, and sleep at 9pm four days a week.
I have talked to my family doctor, and according to her, rheumatologists don't do follow-ups with fibro patients unless the condition changes, as managing the illness is essentially all quality of life stuff (healthy eating, exercise, sleep, stress reduction.) I am no longer able to do my favourite form of exercise (muay thai), but I walk and bike for groceries and around the neighborhood several times a week.
I know what I need is a healthy bedtime routine and sleep hygiene, but I struggle with lending against my sleep bank to do something fun with my friends or for myself, and then having to pay it back with interest when I'm wiped out for days after. I am also doing an MA part-time which means I have to write a 60 page paper by the end of the summer, and do caregiver work every week or other week (medical appointments, visits) for my grandmother, who lives with my parents.
I have done a sleep test and apparently have excellent sleep architecture, so the sleep issues are all fibro-related. I also just need more sleep than others, according to the sleep doctor? My anxiety has gotten much better with years of therapy and medication. I also use the UCLA guided meditation recordings.
If you're a person with low energy or fatigue, how do you manage? Is it all about really good sleep hygiene? If you wake up early, how do you get yourself to go back to sleep? And how do you deal with the guilt of feeling like you're being "lazy" when you need to sleep so much more than everyone else?
Things have changed since then: I got a diagnosis of mild fibromyalgia from a rheumatologist, switched family doctors from an old male doctor who I had to yell at to take my pain seriously to an all-female doctor team, am on a medication that addresses both fibro pain and depression. My work is very accommodating (I occasionally go home early or work from home), my degree in process is very flexible, and I am trying hard not to feel guilty for being "lazy" when I need to sleep.
However, I need a strategy to better take care of my health so I don't overextend myself and then have to sleep it off for several days. I am very fortunate to not have pain unless I'm very tired. My biggest issue is fatigue, which can require 12-15 hours of sleep on weekends. I also commute an hour to work, so I get up at 7am 4 days a week and am back home by 6pm, which means I don't have that much time in the evening before I want to sleep. I can't sleep as much as I want to on weekdays, unless I want to do nothing but work, get home and chill, and sleep at 9pm four days a week.
I have talked to my family doctor, and according to her, rheumatologists don't do follow-ups with fibro patients unless the condition changes, as managing the illness is essentially all quality of life stuff (healthy eating, exercise, sleep, stress reduction.) I am no longer able to do my favourite form of exercise (muay thai), but I walk and bike for groceries and around the neighborhood several times a week.
I know what I need is a healthy bedtime routine and sleep hygiene, but I struggle with lending against my sleep bank to do something fun with my friends or for myself, and then having to pay it back with interest when I'm wiped out for days after. I am also doing an MA part-time which means I have to write a 60 page paper by the end of the summer, and do caregiver work every week or other week (medical appointments, visits) for my grandmother, who lives with my parents.
I have done a sleep test and apparently have excellent sleep architecture, so the sleep issues are all fibro-related. I also just need more sleep than others, according to the sleep doctor? My anxiety has gotten much better with years of therapy and medication. I also use the UCLA guided meditation recordings.
If you're a person with low energy or fatigue, how do you manage? Is it all about really good sleep hygiene? If you wake up early, how do you get yourself to go back to sleep? And how do you deal with the guilt of feeling like you're being "lazy" when you need to sleep so much more than everyone else?
It really sucks, but I do nothing social on nights before work. I take care of myself. I relax. I do everything possible to prevent a flare up because I hate how it takes me days to get back to my normal. I get in bed at 9pm sometimes earlier. I remind myself daily that I’m not a lazy person, I’m treating an illness.
When I do fun things at home that might wipe me out I just over time learned how much I can do without using up too much of my energy. Example: gardening projects that would take a healthy person a couple of hours to do might take me multiple weeks a little bit at a time.
I also do things like doing a lot of my shopping online and having groceries delivered. So I don’t have to waste my energy on boring life crap and can use it for fun things.
posted by ilovewinter at 12:51 PM on June 7, 2019 [10 favorites]
When I do fun things at home that might wipe me out I just over time learned how much I can do without using up too much of my energy. Example: gardening projects that would take a healthy person a couple of hours to do might take me multiple weeks a little bit at a time.
I also do things like doing a lot of my shopping online and having groceries delivered. So I don’t have to waste my energy on boring life crap and can use it for fun things.
posted by ilovewinter at 12:51 PM on June 7, 2019 [10 favorites]
Best answer: I have a chronic illness that causes severe fatigue, but it does not cause me to sleep longer than nine hours, ever. It's possible that you may also, in addition to your other problems, have a thyroid condition. Low levels of the thyroid hormone liothyronine (also called free T3) definitely exacerbate both fibromyalgia and depression and also cause both fatigue and sleepiness.
posted by chromium at 2:35 PM on June 7, 2019 [1 favorite]
posted by chromium at 2:35 PM on June 7, 2019 [1 favorite]
Best answer: Yep, you’re not lazy. You’re ill. The social expectations can be really hard to manage; it hurts to cancel again and again. But managing those expectations of yourself go a long way toward reducing the stress, in my experience. And you have to retrain people around your new reality. Going out to LUNCH, not dinner, a matinee rather than a dinner show. Yes to grocery delivery and house cleaner if you can do that.
I’m 52; been living with this since mid 30’s. I’ve learned not to fight the naps...accepting them means my waking hours are shorter, but better quality. I don’t need them every day, but sometimes they just feel inevitable. If you handle meds okay, ask your doc about a low dose of something like Gabapentin, to see if it might be appropriate for you.
Having a dog keeps me walking most days even when I don’t feel like it, (and gives me a cheerleader who doesn’t get overwhelmed by hearing me talk about how crappy I feel.) Floating in water, and water exercises generally, tire me out, but in different ways that let my muscles, joints, and connective tissue relax and improves the quality of my sleep.
Mentally, I’ve found that setting myself achievable goals and celebrating them has been critical to keeping my self esteem up. The conscious decision, nearly every day (if I’m in serious pain, forget it!) to focus on what I CAN do, and acknowledging-then-moving-on around what I can’t has been so important. If you have trouble achieving this, a counselor may help.
Solidarity to you, and a careful hug if you want one. It sucks, and it’s not fair, and I’m sorry you’re going through this. . Memail me if you need an ear.
posted by Nancy_LockIsLit_Palmer at 2:49 PM on June 7, 2019 [10 favorites]
I’m 52; been living with this since mid 30’s. I’ve learned not to fight the naps...accepting them means my waking hours are shorter, but better quality. I don’t need them every day, but sometimes they just feel inevitable. If you handle meds okay, ask your doc about a low dose of something like Gabapentin, to see if it might be appropriate for you.
Having a dog keeps me walking most days even when I don’t feel like it, (and gives me a cheerleader who doesn’t get overwhelmed by hearing me talk about how crappy I feel.) Floating in water, and water exercises generally, tire me out, but in different ways that let my muscles, joints, and connective tissue relax and improves the quality of my sleep.
Mentally, I’ve found that setting myself achievable goals and celebrating them has been critical to keeping my self esteem up. The conscious decision, nearly every day (if I’m in serious pain, forget it!) to focus on what I CAN do, and acknowledging-then-moving-on around what I can’t has been so important. If you have trouble achieving this, a counselor may help.
Solidarity to you, and a careful hug if you want one. It sucks, and it’s not fair, and I’m sorry you’re going through this. . Memail me if you need an ear.
posted by Nancy_LockIsLit_Palmer at 2:49 PM on June 7, 2019 [10 favorites]
I have a chronic neck condition, plus a healthy dose of generalized anxiety disorder and so I also have to ruthlessly conserve my energy. I rarely do anything on weeknights. It's just not worth the effect the next day. I have a weekly house cleaner. I do my own grocery shopping, but I am hyper-organized about it (my grocery list categories are numbered and match match 1:1 to store aisles) so I am in and out very quickly. I am asleep by 10 on weeknights (which means in bed by 930) because I get up at 5:30 and I'm worthless on less than 7.5 hours of sleep.
I also practice setting boundaries with other people. When my mom calls at 9:15 on a Sunday night, I don't answer, because I know I won't get to bed on time. When my dad wants to get dinner on a weeknight, I say, I'd love to see you, but let's meet on the weekend.
posted by radioamy at 4:26 PM on June 7, 2019 [2 favorites]
I also practice setting boundaries with other people. When my mom calls at 9:15 on a Sunday night, I don't answer, because I know I won't get to bed on time. When my dad wants to get dinner on a weeknight, I say, I'd love to see you, but let's meet on the weekend.
posted by radioamy at 4:26 PM on June 7, 2019 [2 favorites]
Best answer: We had a wonderful family walk this evening after a full day of work. I realized the route we selected was ambitious and the fitness oriented person in me loves that, but the autoimmune condition reality led me to say let's turn around because I'm concerned I'll get myself into a flare if I walk the entire way.
Try not to moralize it. We only have so much room for things. I try not to borrow from future me.
I've been taking ashwaganda that seems to help, and probably too much caffeine. Also large doses of vitamin D as I am chronically low. My rheumatologist prescribed oral steroids to use when needed but the side effects aren't pleasant so I try to avoid it. I have hemp based CBD which helps with pain, malaise and fatigue. Avoiding gluten gets good results for some people.
I bought a rolling stool for the kitchen to save energy when I'm preparing meals. I slack off on chores when I need to.
I also don't usually need much additional sleep despite periods of profound fatigue and recommend asking for blood work to look into that.
posted by crunchy potato at 4:32 PM on June 7, 2019 [3 favorites]
Try not to moralize it. We only have so much room for things. I try not to borrow from future me.
I've been taking ashwaganda that seems to help, and probably too much caffeine. Also large doses of vitamin D as I am chronically low. My rheumatologist prescribed oral steroids to use when needed but the side effects aren't pleasant so I try to avoid it. I have hemp based CBD which helps with pain, malaise and fatigue. Avoiding gluten gets good results for some people.
I bought a rolling stool for the kitchen to save energy when I'm preparing meals. I slack off on chores when I need to.
I also don't usually need much additional sleep despite periods of profound fatigue and recommend asking for blood work to look into that.
posted by crunchy potato at 4:32 PM on June 7, 2019 [3 favorites]
Best answer: Just to add that by all means, you want to work with your healthcare practitioners to eliminate other causes of fatigue, but if you do need to nap, it isn't a personal failure and doesn't mean that you're not as good at being ill as other people. I was at one point sleeping 15 hours a day -- 12 hours every night, and a 3 hour nap. My BFF has fibro and completed a PhD and carries a full-time teaching load and goes to yoga regularly and still has a 60 minute nap every single day because that (and an electric blankie!) is what allows her to achieve those things.
It's different for everyone who deal with disease-related fatigue and you need to go through the process of finding what works for optimum management for you.
posted by DarlingBri at 5:01 PM on June 7, 2019 [4 favorites]
It's different for everyone who deal with disease-related fatigue and you need to go through the process of finding what works for optimum management for you.
posted by DarlingBri at 5:01 PM on June 7, 2019 [4 favorites]
Best answer: I have been living with an autoimmune disorder (doesn't meet the criteria for any known disease) for almost 20 years. One aspect of my disorder is fatigue. I've taken hydroxychloroquine (Plaquenil) daily for 17 years. It manages my major symptoms pretty well but (a) has some serious side effects and (b) I felt like I was losing ground, just puffy and achy and blah all the time.
About three months ago I happened across the Autoimmune Protocol (AIP) variant of the Paleo diet. I've read a lot about it and frankly the explanation about why it works sound farfetched and woo to me. Nonetheless, I tried it. I figured, if it didn't work I didn't need to stick with it. Well, it's working.
AIP is an elimination diet. You quit eating a bunch of stuff (broadly: nightshades including potatoes, peppers and tomatoes, seeds and nuts and their products like canola oil, dairy, legumes and all grains and grainlike foods like quinoa.) You are free to eat as much as you like of meats, organ meats, and fruits and non-nightshade vegetables. Take inventory of how you feel, then slowly start reintroducing the foods, paying attention to how you feel after eating them. I've been in the elimination phase for about two months. My doc gave me her blessing to quit taking Plaquenil and see how I do. If I do ok without the Plaquenil, I'll start reintroducing the inflammatory foods.
I haven't taken Plaquenil for a week. So far, so good. I've lost almost 20 pounds (which wasn't the goal but I'm not complaining). My feet don't hurt in the morning. I haven't had a headache in two months. My face and knees are less puffy. My brain is less foggy. I'm hopeful that this will really be a powerful long-term tool in my health toolkit, even if we're not entirely sure why it works.
Feel free to PM me if you have any questions.
posted by workerant at 9:05 PM on June 7, 2019 [11 favorites]
About three months ago I happened across the Autoimmune Protocol (AIP) variant of the Paleo diet. I've read a lot about it and frankly the explanation about why it works sound farfetched and woo to me. Nonetheless, I tried it. I figured, if it didn't work I didn't need to stick with it. Well, it's working.
AIP is an elimination diet. You quit eating a bunch of stuff (broadly: nightshades including potatoes, peppers and tomatoes, seeds and nuts and their products like canola oil, dairy, legumes and all grains and grainlike foods like quinoa.) You are free to eat as much as you like of meats, organ meats, and fruits and non-nightshade vegetables. Take inventory of how you feel, then slowly start reintroducing the foods, paying attention to how you feel after eating them. I've been in the elimination phase for about two months. My doc gave me her blessing to quit taking Plaquenil and see how I do. If I do ok without the Plaquenil, I'll start reintroducing the inflammatory foods.
I haven't taken Plaquenil for a week. So far, so good. I've lost almost 20 pounds (which wasn't the goal but I'm not complaining). My feet don't hurt in the morning. I haven't had a headache in two months. My face and knees are less puffy. My brain is less foggy. I'm hopeful that this will really be a powerful long-term tool in my health toolkit, even if we're not entirely sure why it works.
Feel free to PM me if you have any questions.
posted by workerant at 9:05 PM on June 7, 2019 [11 favorites]
Adding to the diet comments: staying away from dairy, gluten, yeast, and extra sugar got me off Plaquenil and some (later banned) heavy duty NSAIDs. Don’t know why it works, but it does. It was only after extra physical trauma from a car accident that I had to return to meds as a regular thing.
I also know to plan around hormonal changes. There are several days of the month, as a pre-menopausal female person, that I KNOW I will be more likely to flare. So I try to give myself easier scheduling those days.
posted by Nancy_LockIsLit_Palmer at 8:25 AM on June 8, 2019 [1 favorite]
I also know to plan around hormonal changes. There are several days of the month, as a pre-menopausal female person, that I KNOW I will be more likely to flare. So I try to give myself easier scheduling those days.
posted by Nancy_LockIsLit_Palmer at 8:25 AM on June 8, 2019 [1 favorite]
Response by poster: Thanks for the support and understanding, everyone. I have a requisition to test my thyroid levels, although I suspect they're normal (I had a very thorough blood work panel done after my initial flare up). I'm currently vegetarian with a good vegan component, but will try an elimination AIP diet - if it helps, it helps.
DarlingBri, I really appreciate your and your BFF's story, I know it's possible to keep going and still accomplish things. I am trying hard not to moralize my health but I'm not used to struggling like this - my health has mostly been much better after the diagnosis, so this flare up is difficult. I'm very familiar with spoon theory and read a lot of Captain Awkward (she has disability stuff on her website), but I have to say, it's another thing to apply it to yourself. I've never been ill enough for long enough to identify as chronically ill, if that makes sense.
posted by elsmith at 4:24 PM on June 8, 2019 [1 favorite]
DarlingBri, I really appreciate your and your BFF's story, I know it's possible to keep going and still accomplish things. I am trying hard not to moralize my health but I'm not used to struggling like this - my health has mostly been much better after the diagnosis, so this flare up is difficult. I'm very familiar with spoon theory and read a lot of Captain Awkward (she has disability stuff on her website), but I have to say, it's another thing to apply it to yourself. I've never been ill enough for long enough to identify as chronically ill, if that makes sense.
posted by elsmith at 4:24 PM on June 8, 2019 [1 favorite]
I have a chronic autoimmune disorder that causes inflammation and exhaustion. I find I have more energy when I get plenty of B12. In my case, I eat meat, but you can take supplements.
posted by theora55 at 4:36 PM on June 8, 2019 [1 favorite]
posted by theora55 at 4:36 PM on June 8, 2019 [1 favorite]
Best answer: I've never been ill enough for long enough to identify as chronically ill, if that makes sense.
You have a lifelong condition. Managing it is a lifelong exercise in meeting yourself where you're at. The PhD included taking a year off on medical leave. The full-time teaching position comes with a disabled parking spot. The yoga class means takeout and an early bedtime every Thursday. The illness accompanies you on the way to reaching your goals!
posted by DarlingBri at 10:47 AM on June 9, 2019 [4 favorites]
You have a lifelong condition. Managing it is a lifelong exercise in meeting yourself where you're at. The PhD included taking a year off on medical leave. The full-time teaching position comes with a disabled parking spot. The yoga class means takeout and an early bedtime every Thursday. The illness accompanies you on the way to reaching your goals!
posted by DarlingBri at 10:47 AM on June 9, 2019 [4 favorites]
Stuff that works for me (different conditions, still cause fatigue and stamina issues...)
- Plan to do stuff that is about 75% of my capacity. If everything goes smoothly, I can do a bit more of stuff that I can stop when I hit my limit (i.e. stuff at home, etc.)
- Ideally schedule no more than one thing during the week (any errand more than grocery shopping - so this includes doctor's appointments, oil changes for the car, anything more involved than a pharmacy pickup near my apartment.) and no more than one thing on the weekend. Leave at least one day each weekend with nothing scheduled (ideally Sunday.)
(I'm currently doing a bit better, after doing more to improve quality of sleep, including getting a CPAP, and I can do two errands or a long day out if stuff isn't flaring.)
But that means there's a lot of weeks where I have necessary stuff to do, and don't get to do fun stuff with my friends (or even fun stuff at home.) My actual friends understand, and are generally just fine making plans in advance (so I can avoid scheduling other things that week), setting up low-exertion stuff (I have a monthly dinner with friends near me, for example), or figuring out other options.
- Ruthless pruning of tasks that are hard for me to do, either by outsourcing (cleaning service, which I've done in the past), grocery delivery, options for not having to cook, etc. (I also do stuff like 'all my clothing more or less can go with other bits, and it all goes in the washer together on hot, for allergy reasons' so it require no thought other than hauling it to the laundromat.)
In your case, I'd be looking at whether there are tasks you can do to help your grandmother and parents that might be less physically hard on you, and whether there's anything to improve your commute, as well as 'what can you simplify in your daily life'. (I get up early because there's less traffic and it's way more predictable, and that turns out to be a good tradeoff for me. Might not be for other people.)
posted by jenettsilver at 12:46 PM on June 9, 2019 [2 favorites]
- Plan to do stuff that is about 75% of my capacity. If everything goes smoothly, I can do a bit more of stuff that I can stop when I hit my limit (i.e. stuff at home, etc.)
- Ideally schedule no more than one thing during the week (any errand more than grocery shopping - so this includes doctor's appointments, oil changes for the car, anything more involved than a pharmacy pickup near my apartment.) and no more than one thing on the weekend. Leave at least one day each weekend with nothing scheduled (ideally Sunday.)
(I'm currently doing a bit better, after doing more to improve quality of sleep, including getting a CPAP, and I can do two errands or a long day out if stuff isn't flaring.)
But that means there's a lot of weeks where I have necessary stuff to do, and don't get to do fun stuff with my friends (or even fun stuff at home.) My actual friends understand, and are generally just fine making plans in advance (so I can avoid scheduling other things that week), setting up low-exertion stuff (I have a monthly dinner with friends near me, for example), or figuring out other options.
- Ruthless pruning of tasks that are hard for me to do, either by outsourcing (cleaning service, which I've done in the past), grocery delivery, options for not having to cook, etc. (I also do stuff like 'all my clothing more or less can go with other bits, and it all goes in the washer together on hot, for allergy reasons' so it require no thought other than hauling it to the laundromat.)
In your case, I'd be looking at whether there are tasks you can do to help your grandmother and parents that might be less physically hard on you, and whether there's anything to improve your commute, as well as 'what can you simplify in your daily life'. (I get up early because there's less traffic and it's way more predictable, and that turns out to be a good tradeoff for me. Might not be for other people.)
posted by jenettsilver at 12:46 PM on June 9, 2019 [2 favorites]
Best answer: There are some really great suggestions in this thread.
I would add: it honestly takes awhile to learn, especially if you're me. When I first had to contend with fatigue from my chronic illness, I would overdo it, over and over again. It took doing that and being wiped out and paying for it for days until I really absorbed it and learned from it.
I hear people's stories about what they did on the weekend and I'm kind of shocked -- you went to multiple places in one day?! You hung out with friends at brunch and then went out that night?! You went hiking and then did laundry?!
It's really a readjustment of your life, and it takes awhile to make that adjustment. Go easy on yourself. It kind of sucks, but you'll figure out what you can do without hurting yourself, and you'll settle in.
Best of luck. I know this stuff is hard. If you can throw money at various parts of the problem (having cleaners in has been kind of life-changing), that will help too.
posted by fiercecupcake at 8:16 AM on June 10, 2019 [4 favorites]
I would add: it honestly takes awhile to learn, especially if you're me. When I first had to contend with fatigue from my chronic illness, I would overdo it, over and over again. It took doing that and being wiped out and paying for it for days until I really absorbed it and learned from it.
I hear people's stories about what they did on the weekend and I'm kind of shocked -- you went to multiple places in one day?! You hung out with friends at brunch and then went out that night?! You went hiking and then did laundry?!
It's really a readjustment of your life, and it takes awhile to make that adjustment. Go easy on yourself. It kind of sucks, but you'll figure out what you can do without hurting yourself, and you'll settle in.
Best of luck. I know this stuff is hard. If you can throw money at various parts of the problem (having cleaners in has been kind of life-changing), that will help too.
posted by fiercecupcake at 8:16 AM on June 10, 2019 [4 favorites]
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By recognizing that you're not lazy, you're ill. Who are you trying to impress by lying to yourself about that reality?
What are your strategies for managing your illness and its impact on your life?
I am an expert at Conservation of Energy. Spoons theory. House cleaner. Grocery deliveries. Naps. One scheduled activity per weekend, which I opt out of 50% of the time. Naps.
posted by DarlingBri at 12:48 PM on June 7, 2019 [13 favorites]