Post Exertional Malaise

Hi @rinadbq. I may have shared before but thank you for sharing from a medical professional standpoint your journey. I had really tough symptom day yesterday and literally crying this am while I should be grateful slept thru night and woke feeling decent. Tears from this unpredictable excruciating journey of no rhyme/reason, havnt worked in over year with no income, previously very active and helped other family members and now I have to pace taking shower or phone call for whole days activity. Your sharing is giving me drive to keep pushing forward. Thank you for all you did do and helping all of us now💖

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,

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!

I agree! I am a NICU nurse of 40 years that got Covid for first time in October. Hospitalized for 5 days and have had continued GI symptoms & extreme fatigue. Can’t imagine working again at this point but am in no way ready for my career to end either. I am a breast cancer survivor who fought like hell and was able to work again after that journey. Very frustrating how this can change your entire life in a heart beat. Have always been very active, been in leadership working full time in a busy ICU, 4 children, 3 grandchildren but life came to a halt last October. Like you said pacing every step of the day and paying dearly for anything you do over. Took 3 weeks to recover from a weekend that involved a funeral and a grandchild’s birthday party. I am truly blessed to have a Dr that understands to help make this journey manageable.

I agree! I am a NICU nurse of 40 years that got Covid for first time in October. Hospitalized for 5 days and have had continued GI symptoms & extreme fatigue. Can’t imagine working again at this point but am in no way ready for my career to end either. I am a breast cancer survivor who fought like hell and was able to work again after that journey. Very frustrating how this can change your entire life in a heart beat. Have always been very active, been in leadership working full time in a busy ICU, 4 children, 3 grandchildren but life came to a halt last October. Like you said pacing every step of the day and paying dearly for anything you do over. Took 3 weeks to recover from a weekend that involved a funeral and a grandchild’s birthday party. I am truly blessed to have a Dr that understands to help make this journey manageable.

I have had covid twice--Dec 2020 and recently March 28, 2023. I coped after the first time with tipsy/vertigo and a energy crash after about 5 hours but managed to golf 9 holes in a cart. It was stressful pushing thru but the sense of accomplishment was good for my efforts. Now I'm striving to just keep upright and alert but tough sledding. I'm 85 but I'm not giving up and neither should you.

I hear you Mary! I also have 40 years of nursing & if I learned anything, it is life can change in a minute! I try to find something I am grateful for-I am alive, I can live independently in my own house and bathe/feed/take care my ADL's, I can drive, and I am not tethered to oxygen. OK, so the bar is a lot lower than my life before covid. You walked through to the other side of cancer, you know struggle. My 25 year marriage ended after I got sober-16 years ago, I've walked through rough stuff too. And we are still standing on the green side of the grass, not 6' under.
I only spend my time with those who are the most important-my time an energy are precious. My bed isn't made, my hair isn't great, my home isn't spotless, gourmet meals are gone and family gatherings are catered-and that's ok. I feel like Helen Reddy: 'I am woman, hear me roar!'

Good for you! I’m a fighter.. giving up is not in me! I’m expecting a new granddaughter in September so I have a lot to look forward to. This has just made me realize my family is the most important and all my energy goes to that not trying to figure out a way to get back to work. Thank you for sharing & keep up your positivity.