Post Exertional Malaise

I have been experiencing this for >2 years and have found that pacing myself is the only way to prevent/lessen the degree of crashes. PT,OT,SLP was the biggest help in identifying why I can feel so great, charge forward in my life, then am in excruciating pain with overwhelming & incapacitating exhaustion for 2 days after.

I started with a simple spiral/composition notebook & wrote down everything I did in a day on one page:

Sleep: could I fall asleep, stay asleep, up frequently? Do I feel rested on waking? Did I get hit with exhaustion at 10am and have to go back to bed. Do I need to nap during the day? When did I start feeling tired during the day. What time I went to bed.
Cognitive/Brain work/Thinking: making plans for the week, managing personal finances, work emails, grocery list, planning-social events, travel, train schedules, driving directions, legal work, packing & travel, appointments, reading, puzzles
Physical work: grocery shop, errands, gardening, gym, walking, laundry, meal prep/cooking/clean up, cleaning up the home, wash/dry/set my hair, PT, walking the dog.
'Crash' episodes: what time of day, how long, what it felt like

Next to each activity I mark whether it is Cognitive or Physical, and time spent doing that activity.
On the facing page of the notebook, identify specific symptoms you had during the activity: breathing was harder, coughing, had to stop the activity, fast heart rate, dizzy, off balance, exhaustion, muscle pain, headache, nausea, difficulty concentrating, memory, vision changes, depression or anxiety.
I could then see where my energy was being used. I am now at a limit of 2 hours of physical work and 2-3 hours of cognitive in a day. I know I will crash when I go beyond this.
I do simple meal prep/cooking in one day along with laundry but no thinking work so Im not cooking every day. I count that as a workout. I shower, do my hair, pick out clothing & accessories the day before an outing and do nothing the day of so I have energy to enjoy. My house is not immaculate, just picked up. I get groceries delivered. Only 2 appointments in a day. I use a timer on my phone to help pacing my activity.
My long-haul symptoms have not improved-my time management and pacing has, and that has made all the difference in the world. Of course I still have crashes, but the more I stay in my own limits, the less frequent and less severe they are. PM if you want to talk further,

I have been experiencing this for >2 years and have found that pacing myself is the only way to prevent/lessen the degree of crashes. PT,OT,SLP was the biggest help in identifying why I can feel so great, charge forward in my life, then am in excruciating pain with overwhelming & incapacitating exhaustion for 2 days after.

I started with a simple spiral/composition notebook & wrote down everything I did in a day on one page:

Sleep: could I fall asleep, stay asleep, up frequently? Do I feel rested on waking? Did I get hit with exhaustion at 10am and have to go back to bed. Do I need to nap during the day? When did I start feeling tired during the day. What time I went to bed.
Cognitive/Brain work/Thinking: making plans for the week, managing personal finances, work emails, grocery list, planning-social events, travel, train schedules, driving directions, legal work, packing & travel, appointments, reading, puzzles
Physical work: grocery shop, errands, gardening, gym, walking, laundry, meal prep/cooking/clean up, cleaning up the home, wash/dry/set my hair, PT, walking the dog.
'Crash' episodes: what time of day, how long, what it felt like

Next to each activity I mark whether it is Cognitive or Physical, and time spent doing that activity.
On the facing page of the notebook, identify specific symptoms you had during the activity: breathing was harder, coughing, had to stop the activity, fast heart rate, dizzy, off balance, exhaustion, muscle pain, headache, nausea, difficulty concentrating, memory, vision changes, depression or anxiety.
I could then see where my energy was being used. I am now at a limit of 2 hours of physical work and 2-3 hours of cognitive in a day. I know I will crash when I go beyond this.
I do simple meal prep/cooking in one day along with laundry but no thinking work so Im not cooking every day. I count that as a workout. I shower, do my hair, pick out clothing & accessories the day before an outing and do nothing the day of so I have energy to enjoy. My house is not immaculate, just picked up. I get groceries delivered. Only 2 appointments in a day. I use a timer on my phone to help pacing my activity.
My long-haul symptoms have not improved-my time management and pacing has, and that has made all the difference in the world. Of course I still have crashes, but the more I stay in my own limits, the less frequent and less severe they are. PM if you want to talk further,

I have been experiencing this for >2 years and have found that pacing myself is the only way to prevent/lessen the degree of crashes. PT,OT,SLP was the biggest help in identifying why I can feel so great, charge forward in my life, then am in excruciating pain with overwhelming & incapacitating exhaustion for 2 days after.

I started with a simple spiral/composition notebook & wrote down everything I did in a day on one page:

Sleep: could I fall asleep, stay asleep, up frequently? Do I feel rested on waking? Did I get hit with exhaustion at 10am and have to go back to bed. Do I need to nap during the day? When did I start feeling tired during the day. What time I went to bed.
Cognitive/Brain work/Thinking: making plans for the week, managing personal finances, work emails, grocery list, planning-social events, travel, train schedules, driving directions, legal work, packing & travel, appointments, reading, puzzles
Physical work: grocery shop, errands, gardening, gym, walking, laundry, meal prep/cooking/clean up, cleaning up the home, wash/dry/set my hair, PT, walking the dog.
'Crash' episodes: what time of day, how long, what it felt like

Next to each activity I mark whether it is Cognitive or Physical, and time spent doing that activity.
On the facing page of the notebook, identify specific symptoms you had during the activity: breathing was harder, coughing, had to stop the activity, fast heart rate, dizzy, off balance, exhaustion, muscle pain, headache, nausea, difficulty concentrating, memory, vision changes, depression or anxiety.
I could then see where my energy was being used. I am now at a limit of 2 hours of physical work and 2-3 hours of cognitive in a day. I know I will crash when I go beyond this.
I do simple meal prep/cooking in one day along with laundry but no thinking work so Im not cooking every day. I count that as a workout. I shower, do my hair, pick out clothing & accessories the day before an outing and do nothing the day of so I have energy to enjoy. My house is not immaculate, just picked up. I get groceries delivered. Only 2 appointments in a day. I use a timer on my phone to help pacing my activity.
My long-haul symptoms have not improved-my time management and pacing has, and that has made all the difference in the world. Of course I still have crashes, but the more I stay in my own limits, the less frequent and less severe they are. PM if you want to talk further,

I totally relate, almost exactly, since Oct 2021. It's so frustrating. Spring cleaning is in the air and I can only do about 15 minutes at a time, rest for 30-40, and resume again. Only about an hour of actual work takes like 3 hours otherwise down for the next day. I too am working on limiting and moderation, but it is difficult for me.

Thank you for writing this! I had a concussion in a car crash and then got Covid in the same week, in the first days of February. I'm feeling a tiny bit better but still pretty much like I did when I came home from the hospital. I'm working now on coming to terms with the ongoing effect on my life, friendships, finances, independence, etc.

I don't need PT but do have about 12 other symptoms, and brain fog is the worst. But physical effort seems to affect cognitive function, and vice versa. I've been jotting down a sentence or two about my worst symptoms every day, and then using a number from 1-10 to indicate how my functioning that day compares to before it all happened. Your system of tracking symptoms is a much better organized way of grouping them and also identifying triggers and what does and doesn't help. I can see how it will be much more useful and effective. Thanks again!

It is a HUGE adjustment! Going from ER Nurse in a trauma center working 12 hours shifts to setting an alarm so I know when to stop what I am doing at home. Just mentally wrapping my head around leaving work one day and not able to work the next. I tried going back to simple work in a vaccine clinic for 4 hours and was overwhelmed. At 63 this just may be retirement for me. I can't think of a sedentary 4 hour job.
Knowing where my limits are and what to expect is of great comfort-especially as this syndrome becomes more studied and accepted by the medical community. The first year was ridiculous!