I feel confident that some of you are laughing, already.
Let's be honest, here. Even people with minor-to-moderate ME (like me) can't keep a schedule. If you have minor-to-moderate ME, some days you feel almost normal, and the symptoms you do experience are relatively easy to handle or ignore. You go about your business five, even six hours and feel about as energetic as the average person recovering from a nasty cold.
If you're anything like me, there are other, less fortunate days where you wake up and it's like your body has been mysteriously replaced with zombie flesh. We don't need to re-hash the worst of the ME symptoms because that's covered pretty much everywhere else on these forums. It suffices to say that any activity is a wish your heart makes, rather than an actual potential reality.
And on some days, your ME comes with hallucinations of helpful bluebirds in random headgear!
I've developed a vast array of coping and pacing strategies that have worked for me, and I have held down two part-time jobs I can do at home, partly because of these strategies. Some of them I'm sure you're already familiar with, but I hope you will find something useful to you here.
I'm going to make my usual disclaimer. What works for me may not work for you. Moreover, what I say here definitely won't work for people who have moderate (or severe) symptoms all the time. It will only (potentially) work for those of you who have the same sort of relapsing-remitting course I seem to.
Let's start off with some really general stuff, like how to choose tasks to accomplish and employment to pursue (if that's where you are, and what you're ready for.) The next post will be more specific, relating to specific tasks you may be capable of if you have minor-moderate ME that may benefit you in the long run.
How to Choose Tasks To Pursue with M.E.:
I. Choose either immediate or longer-term tasks that fit your disease pattern.
The 'due date' for what you accomplish must be set far in advance, so that you can work on projects whenever you have energy. For tasks that seem that they must be accomplished immediately when you are in crash mode, or are too large for you to accomplish all at once within the confines of your illness, there are three choices:
(No, little Dalek. That is not part of the plan.)
For writing, I choose jobs that have a timeframe of about a week, but really only require two or three days to accomplish. It is a rare week when I don't have two days I'm capable of being at my computer, so this is a 'safe bet'.
On a day I felt quite well, I might also choose an assignment that is due the next day. If the assignment only takes a few hours to complete, I know I can do it right in that moment that I feel well.
Choosing a two- or three-day assignment isn't logical for me, and here's why.
I typically have one day a week I feel awful. Three days is about half a week. Therefore, taking a three-day job means I have about a 50-50 shot that I will be very sick one of those three days -- thereby losing a third of the time it takes to complete the assignment. This isn't a reasonable gamble, so I simply don't take jobs that require between 3-5 days of work.
If I have a week-long assignment, I have a pretty good chance of being really sick one of those days; but if I am, I've only lost 1/7 of the time for the assignment, and that doesn't appreciably impact the quality of my work.
It took some trial and error to figure this out... and what works for you will be individual, based on your average crash-days per week or month.
II. Ensure that the tasks you set yourself are within your abilities.
If they aren't, follow the same three choices presented above.
Setting your sights too high -- whatever 'too high' is for you -- can make you feel like a failure, especially if those tasks are seemingly simple tasks you feel you 'should' be capable of doing. This one took me awhile to learn.
Re-learn your capabilities; if they shift a great deal from day-to-day, focus on how to gauge the shifts as they occur. I talk about the warning signs my body gives me before I crash with stages of severity in this post here. Perhaps some of your 'warning signs' are similar. Keep a mental or actual list, and be vigilant so that you can slow down before the crash occurs, whenever that is at all possible.
'Maintenance' tasks that must be done often must be very easy to accomplish: something you could do on all but your very worst days.
III. Determine your most active times of day, and plan activity around them.
Especially if you have HPA axis abnormalities, you may find that you feel completely drained at very specific times of day (most common is a 3pm slump). Planning to do tasks around this time period is setting yourself up for failure.
Part of working around this is letting friends, family, and clients/employers know you are unavailable around this time. If you are at a place where you are ready to look for employment, even part-time, you should be searching for a job where it doesn't matter when you work, so long as you work about the same number of hours per week or month; or a job in which it doesn't matter when you work, so long as you meet deadlines that you can fit within your disease pattern.
I have two distinct 'up' time periods: 9AM to 12PM, and 8PM to 11PM. Note that they're almost exactly twelve hours apart. Just like the 3pm slump, a 12-hour time gap between your most energetic times of day is often the case for people with adrenal issues (if your sleep cycle isn't completely off the rails).
In my job as a teaching assistant online, I set my office hours for 10AM to noon. I can get up at 8 or 8:30, drink coffee and take pills and fiddle around on the internet for a leisurely bit before getting to work, and I'm clear-headed and capable for those two hours my students need me. I also use this as grading time, since students are not asking questions continually.
In my job as a freelance writer, I search out jobs in the evening, and do most of my writing between 9 and 11pm, though on better days I can also work in the afternoon.
IV. Plan on Being Very Sick.
When I feel better, I act as though I am a nursemaid to a critically-ill person.
I cook and freeze soup and nutbread. I cut up veggies and freeze them in one-cup increments so cooking is simpler and less strenuous. I straighten the living room and the kitchen and the bathroom. I do this all in short bursts of activity so that I don't crash, preparing the house for the invalid who will soon take my place.
Every other week, I get 70 assignments to grade. They should be turned back into the students no more then a week after the due date. It's reasonable to do about ten a day. Instead, I do twenty a day, planning for the day (or two, or three) when I won't be capable of doing any work at all.
I do this for my 24-hour cycle, too, in miniature: in the morning, when my energy is highest, I gather water, pills, the book I'm reading, and place them on my bedside table. I wander in the bedroom a few hours before bed and turn on the heated blanket I keep there so that it's warm by the time I'm ready to get in. I set soup bubbling during office hours where all I have to do is get up and stir, because that's my most active period of the day.
Whenever I am faced with a small task, I ask myself if I will have an easier or harder time if I decide to do it later. If I'm feeling well, the answer is always 'do it now'. If I'm feeling awful, the answer is always 'do it later', when I'm better off.
As a result, I experience no guilt whatsoever about not doing any task. This is because doing or not doing has become a very simple yes-no question: where are you on your own, personal scale of wellness, and can it get worse? If the answer is, 'it can get a lot worse' and 'I am currently physically capable of doing this task', the answer is to do it right then, while you still can.
Can I describe how good it feels when I am incredibly ill and someone kind -- me! -- has arranged to make my life easier? The foolish little tasks that I do when I'm well mean everything to me when I'm not.
___________________________
Finishing this part up, it certainly does seem like I am writing a How To Pace guide. Maybe I am.
I hesitate a bit to post, because I'm sure some of this is common sense; and I also hesitate a bit because I know how many of you out there are so sick that what I'm describing here sounds like an absolute fantasy of wellness. However, there are a lot of we minor-moderates, who still can't quite hold down that full-time job because even minor M.E. is still... well, M.E.
Some of these lessons were very hard-won, and I hope that others can make use of them without quite as much trial and error as I did.
More next time: starting a garden with M.E.
Let's be honest, here. Even people with minor-to-moderate ME (like me) can't keep a schedule. If you have minor-to-moderate ME, some days you feel almost normal, and the symptoms you do experience are relatively easy to handle or ignore. You go about your business five, even six hours and feel about as energetic as the average person recovering from a nasty cold.
If you're anything like me, there are other, less fortunate days where you wake up and it's like your body has been mysteriously replaced with zombie flesh. We don't need to re-hash the worst of the ME symptoms because that's covered pretty much everywhere else on these forums. It suffices to say that any activity is a wish your heart makes, rather than an actual potential reality.
And on some days, your ME comes with hallucinations of helpful bluebirds in random headgear!
I'm going to make my usual disclaimer. What works for me may not work for you. Moreover, what I say here definitely won't work for people who have moderate (or severe) symptoms all the time. It will only (potentially) work for those of you who have the same sort of relapsing-remitting course I seem to.
Let's start off with some really general stuff, like how to choose tasks to accomplish and employment to pursue (if that's where you are, and what you're ready for.) The next post will be more specific, relating to specific tasks you may be capable of if you have minor-moderate ME that may benefit you in the long run.
How to Choose Tasks To Pursue with M.E.:
I. Choose either immediate or longer-term tasks that fit your disease pattern.
The 'due date' for what you accomplish must be set far in advance, so that you can work on projects whenever you have energy. For tasks that seem that they must be accomplished immediately when you are in crash mode, or are too large for you to accomplish all at once within the confines of your illness, there are three choices:
- Delegate (to someone else, either in part or entirely)
- Negotiate (for more time)
- Capitulate (accept that you're going to have do the work now, regardless of how you feel, and clear your schedule tomorrow for a crash. For emergencies only!)
- Formulate (a better plan for next time). Sometimes this is impossible, but a surprising amount of the time, it's not.
(No, little Dalek. That is not part of the plan.)
For writing, I choose jobs that have a timeframe of about a week, but really only require two or three days to accomplish. It is a rare week when I don't have two days I'm capable of being at my computer, so this is a 'safe bet'.
On a day I felt quite well, I might also choose an assignment that is due the next day. If the assignment only takes a few hours to complete, I know I can do it right in that moment that I feel well.
Choosing a two- or three-day assignment isn't logical for me, and here's why.
I typically have one day a week I feel awful. Three days is about half a week. Therefore, taking a three-day job means I have about a 50-50 shot that I will be very sick one of those three days -- thereby losing a third of the time it takes to complete the assignment. This isn't a reasonable gamble, so I simply don't take jobs that require between 3-5 days of work.
If I have a week-long assignment, I have a pretty good chance of being really sick one of those days; but if I am, I've only lost 1/7 of the time for the assignment, and that doesn't appreciably impact the quality of my work.
It took some trial and error to figure this out... and what works for you will be individual, based on your average crash-days per week or month.
II. Ensure that the tasks you set yourself are within your abilities.
If they aren't, follow the same three choices presented above.
Setting your sights too high -- whatever 'too high' is for you -- can make you feel like a failure, especially if those tasks are seemingly simple tasks you feel you 'should' be capable of doing. This one took me awhile to learn.
Re-learn your capabilities; if they shift a great deal from day-to-day, focus on how to gauge the shifts as they occur. I talk about the warning signs my body gives me before I crash with stages of severity in this post here. Perhaps some of your 'warning signs' are similar. Keep a mental or actual list, and be vigilant so that you can slow down before the crash occurs, whenever that is at all possible.
'Maintenance' tasks that must be done often must be very easy to accomplish: something you could do on all but your very worst days.
III. Determine your most active times of day, and plan activity around them.
Especially if you have HPA axis abnormalities, you may find that you feel completely drained at very specific times of day (most common is a 3pm slump). Planning to do tasks around this time period is setting yourself up for failure.
Part of working around this is letting friends, family, and clients/employers know you are unavailable around this time. If you are at a place where you are ready to look for employment, even part-time, you should be searching for a job where it doesn't matter when you work, so long as you work about the same number of hours per week or month; or a job in which it doesn't matter when you work, so long as you meet deadlines that you can fit within your disease pattern.
I have two distinct 'up' time periods: 9AM to 12PM, and 8PM to 11PM. Note that they're almost exactly twelve hours apart. Just like the 3pm slump, a 12-hour time gap between your most energetic times of day is often the case for people with adrenal issues (if your sleep cycle isn't completely off the rails).
In my job as a teaching assistant online, I set my office hours for 10AM to noon. I can get up at 8 or 8:30, drink coffee and take pills and fiddle around on the internet for a leisurely bit before getting to work, and I'm clear-headed and capable for those two hours my students need me. I also use this as grading time, since students are not asking questions continually.
In my job as a freelance writer, I search out jobs in the evening, and do most of my writing between 9 and 11pm, though on better days I can also work in the afternoon.
IV. Plan on Being Very Sick.
When I feel better, I act as though I am a nursemaid to a critically-ill person.
I cook and freeze soup and nutbread. I cut up veggies and freeze them in one-cup increments so cooking is simpler and less strenuous. I straighten the living room and the kitchen and the bathroom. I do this all in short bursts of activity so that I don't crash, preparing the house for the invalid who will soon take my place.
Every other week, I get 70 assignments to grade. They should be turned back into the students no more then a week after the due date. It's reasonable to do about ten a day. Instead, I do twenty a day, planning for the day (or two, or three) when I won't be capable of doing any work at all.
I do this for my 24-hour cycle, too, in miniature: in the morning, when my energy is highest, I gather water, pills, the book I'm reading, and place them on my bedside table. I wander in the bedroom a few hours before bed and turn on the heated blanket I keep there so that it's warm by the time I'm ready to get in. I set soup bubbling during office hours where all I have to do is get up and stir, because that's my most active period of the day.
Whenever I am faced with a small task, I ask myself if I will have an easier or harder time if I decide to do it later. If I'm feeling well, the answer is always 'do it now'. If I'm feeling awful, the answer is always 'do it later', when I'm better off.
As a result, I experience no guilt whatsoever about not doing any task. This is because doing or not doing has become a very simple yes-no question: where are you on your own, personal scale of wellness, and can it get worse? If the answer is, 'it can get a lot worse' and 'I am currently physically capable of doing this task', the answer is to do it right then, while you still can.
Can I describe how good it feels when I am incredibly ill and someone kind -- me! -- has arranged to make my life easier? The foolish little tasks that I do when I'm well mean everything to me when I'm not.
___________________________
Finishing this part up, it certainly does seem like I am writing a How To Pace guide.
Maybe I am.I hesitate a bit to post, because I'm sure some of this is common sense; and I also hesitate a bit because I know how many of you out there are so sick that what I'm describing here sounds like an absolute fantasy of wellness. However, there are a lot of we minor-moderates, who still can't quite hold down that full-time job because even minor M.E. is still... well, M.E.
Some of these lessons were very hard-won, and I hope that others can make use of them without quite as much trial and error as I did.
More next time: starting a garden with M.E.
