I still vividly remember the first few moments my PEM melted away.
It was like magic.
I was shocked; in awe.
6 years of that curse turning my mostly bedridden life into a special hell if I dared to overdo, ever. And sometimes ever without overdoing. Just for kicks.
The only way I could ever really describe PEM is "fatigue so extreme it should be rated as a form of pain." The sheer magnitude of suffering involved in my experience of it is staggering. I'd easily prefer most types of pain, unmedicated, even at high intensity, instead of PEM if I were given the choice. I think it's impossible to quantify the depth of its misery.
Yet one day, I felt the classic PEM hitting me, and knew I was in for an awful day. But as I laid down to weather it as best I could.... it stopped. An amazing sense of restfulness washing over me, cancelling out the fatigue in seconds as it did so. It was like there was a sigh of relief throughout every tissue. I felt so good. Then I sat up to type about it - and it returned in all its ferocity. Laid back down again, got back to my meditative state, and it disappeared.
Here's my theory: PEM is caused by a physiological inability to rest. In a healthy functioning body, lying down to rest involves feeling exhausted until you are horizontal, then feeling an intense relief as your body relaxes. The previous fatigue is met by a sense of rest that overtakes it creating a lovely healing experience. Normal people take this for granted. PWCs find it unimaginable.
Or at least, I did.
When I experienced it, amidst the initial shock was the strong sense that "oh, this is how it's supposed to be." It's normal functioning. In fact, in months that followed I discovered that it was actually beneficial for me to intentionally induce "PEM" when resting fully relieved it, because "overdoing" threw me into a much deeper state of rest that was far more restorative. So this is why people say exercise is so good for you!
But it's terrible if you body is incapable of rest. Because then all activity does is make you worse.
I'm not entirely certain why our bodies can't rest. In order to get to the point of relieving my PEM I had to work through a large combination of factors:
My personal healing process began with learning meditative techniques to manually wind down the nervous system. This brought on greater sensitivity to light and noise and people, so next order of business was to turn my life upside down to reduce the trauma. After these two things were in place, seeing a cranial osteopath brought my body to an intense state of relief, which made me even more sensitized, and I had to become even more isolated. But when isolated and resting, the pain was gone and I felt fantastic. I could feel myself healing.
- Chronic pain
- Nervous system that never in my life learned to properly calm down
- Emotional factors, not feeling "safe", life continuously traumatic
- High general burden on my body (emfs, malnutrition, sensitivities)
- Massive structural issues holding my tissues in continuous tension
Emotional factors were the next to surface, as I spent days, weeks, months talking myself through the notion that it's actually safe to relax. Turns out if I relaxed my throat too much my air passages collapsed, so it was a reasonable fear. Once osteopathy began working on my throat I discovered I swallowed incorrectly, which was affecting lymph drainage in my neck (and chronic double ear infections). I traced this back to a severe choking incident in my childhood where I thought I had to swallow differently to prevent further choking. The muscles are improperly toned from decades of incorrect use. Another example: I sleep curled up for self-comfort when I'm hurting emotionally, and over the years that's caused pretty significant strain in my back. I could probably give a hundred more examples. These were all things I had to slowly work my way through for the ultimate goal of healing.
And I'm sure getting there!
The point is, I'm not healing by focusing on increasing activities. That's sheer stupidity, IMO. I'm also not healing by just going to an osteopath and expecting that to fix things. No, rest is the #1 priority. Always has been. When I'm able to rest, then my activities naturally increase because my body is finally up to it.
This is what "PEM" looks like to me these days, nearly 2 years after the initial breakthrough: I do too much, so I have a day where the moment I get out of bed my body is screaming at me with fatigue and brainfog. So I spend as much time as possible in bed. I'm much more sensitized to noise disturbance, lights, and people. So long as those three are reduced enough (to nearly nothing) then I can rest deeply and the only misery happens when I get out of bed and ceases the moment I'm resting again. So worst case scenario I miss a few days of life by resting comfortably.
If I'm traumatized in that state by repeated noise or whatever then we truly have a problem. Otherwise? Everything's cool, life is good (if slow), and healing continues. Low dose pain medication can sometimes save the day by reducing sensitivity, whereas beforehand even large doses of pain meds could not induce an adequate state of rest.
I wish I could be of more help to those still suffering this....I wish I could give you a simple answer. I only know what has worked for me, and it has been a very intensive, 2 year process to get here that has turned me inside out in more ways than I thought possible. The healing results I'm getting, though, have more depth to them than I ever imagined. This isn't remission; it's thoroughly addressing the root of issues that interfere with my health. I can feel it way down in my bones, because unlike a random good day/week/year this process unfolds each problem slowly and deals with it, which is usually painful or unpleasant in some form but you can feel the progress. And I know I've got infections, lyme, severe D deficiency, malnourishment, GI issues, all that which I haven't bothered investigating for a while, now. Because resting is what gives my body wings to fly, and heal itself. As I'm well enough, I'll look into all that again. But in the meantime, I've got my answer.
My very best to all of you still struggling with this horrid symptom. *hugs*
P.E.M./P.E.N.E. - The Cause (of mine)
Blog entry posted by Dainty, Feb 13, 2014.
About the Author
Dainty became ill as a teenager and spent 7 years mostly bedridden from ME/CFS, life-threatening MCS reactions, extreme food allergies/sensitivities, cognitive impairment, fibromyalgia, episodes of temporary paralysis and various unexplained emergencies. The past couple years she has experienced profound improvement from various treatment approaches. With homelessness and PTSD presenting as significant obstacles, she continues to pursue healing full time and find incorrigible opportunities to enjoy life.