Connect
← Return to Post Exertional Malaise
Discussion
Comment receiving replies
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,
Replies to "I have been experiencing this for >2 years and have found that pacing myself is the..."
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!
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.
This is amazing. So organized. I've been trying to find my baseline. But keeping track of everything is exhausting! You have definitely inspired me to try again, this time I will do it your way. Thank you so much for sharing your experience and technique.
Connect
Hi @rinadbq. Tx so much for taking time and energy to thoroughly explain what so many of us have experienced and hope this type of info can help others with long haul and enable empathy with understanding for those who do not.
Healing to everyone 🌈