I've been doing the reading recommended by the doc and have learned a new term: Post-exertional Malaise (PEM).
Post-exertional malaise (PEM) is the worsening of symptoms after even minor physical, mental or emotional exertion. The symptoms typically get worse 12 to 48 hours after the activity and can last for days or even weeks.
Yes, indeed! Something as simple as a conversation can set me back and the conversation could be welcomed and pleasant. Doesn't matter. The human interaction can simply require more energy than what's available to me.
PEM can be addressed by activity management, also called pacing. The goal of pacing is to learn to balance rest and activity to avoid PEM flare-ups, which can be caused by exertion that patients cannot tolerate. To do this, patients need to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients and doctors refer to staying within these limits as staying within the “energy envelope.” The limits may be different for each patient. Keeping activity and symptom diaries may help patients find their personal limits, especially early on in the illness.
This is essentially what I have been doing. When it became evident that I could no longer manage working. I removed myself from work despite not knowing what was wrong with me. I simply knew that I did not have it in me and could not do what was required of me.
For some patients, even daily chores and activities such as cleaning, preparing a meal, or taking a shower can be difficult and may need to be broken down into shorter, less strenuous pieces. Rehabilitation specialists or exercise physiologists may help patients with adjusting to life with this condition. Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning. However, exercise is not a cure.
Daily chores and activities have been very difficult and have had to be broken down into shorter, less strenuous pieces. And, quite frankly, many things simply are not getting done. I have intuitively done this based on feedback from the body. Thankfully, I do a fairly good job of listening and responding accordingly.
Patients need to avoid ‘push-and-crash’ cycles through carefully managing activity. “Push-and-crash” cycles are when someone is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again). This can then lead to a “crash” (worsening of symptoms). Finding ways to make activities easier may be helpful, like sitting while doing the laundry or showering, taking frequent breaks, and dividing large tasks into smaller steps.
Interestingly enough, I realize that I have been sitting while doing laundry. Did not used to do that; but, I am now. Purchasing a shower bench would be a good idea. Not because I cannot stand. I simply do not have the energy to stand for long and run the risk of getting faint and passing out. And, because of the diagnosis that came in March, I've been advised not to take baths which was my preference. So, it has been showers since March and taking a shower is taxing.
Any activity or exercise plan for people with the condition needs to be carefully designed with input from each patient. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with this condition do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with this condition. However, it is important that patients undertake activities that they can tolerate, as described above.
It is so validating to see that standard exercise recommendations for healthy people (which I have ignored since incurring the non-traumatic pelvic fracture) can be harmful for patients like myself. Yeah. My body did not lead me astray.
PEM is simply one of six (6) primary symptom classes that healthcare providers may seek to address. I am challenged in each of these 6 symptom classes. Some more so than others. But, challenged in all areas nonetheless.
Seems to me avoiding "push-and-crash" cycles is wise in any regard. It's just that those in situations such as mine can pay dearly for such energy expenditure miscalculations. And, a good night's rest is not going to cut it. The toll extracted is far greater!