My illness is Myalgic Encephalomyelitis. It is also called Chronic Fatigue Syndrome, which is like calling Alzheimer’s Chronic Senior Moment Syndrome.
I have had to navigate this on my own: research, diagnose, and manage it. I don’t say treat because there is no treatment. There is only careful and informed, or intuitive and haphazard, self-management.
It needs counterintuitive management. The more you strive or push, the more you are tempted to exercise— the sicker you become. So you have to obey it. You must listen to the illness, to how you feel, and act accordingly. If your body or brain says to lie down, do it.
Stop planning. Stop being efficient, stop acting. Rest. Do as little as possible, physically, mentally, emotionally. Let the waves roll over you. Suspend yourself and wait…wait…wait.
PEM is the telltale feature. Post Exertional Malaise. If you exert yourself physically, mentally, emotionally, too much— and how much too much is changes all the time— you will be hit with the nasty payback. It will be delayed typically 24 to 48 hours after the effort. Exhaustion and reassertion of symptoms all out of proportion to the exertion. This could last a day or forever.
When and if you reach a state of stability, after “rolling crashes” have faded, you can begin to be somewhat proactive. But you must keep your hard earned understanding of listening to your body and obeying. Here I should define rolling crash:
A crash is what it’s called when your symptoms suddenly worsen and become debilitating. A crash may last anywhere from a week to the rest of your life.
Rolling crashes are when your illness is severe and you are experiencing crashes from the activities of baseline existing. You’re already bed-bound, but it gets too hot so you crash the next few days. You roll over in bed too many times and you feel flu-like for awhile. You felt well enough to get a real shower so you crash the next few days. You got upset or worried about a family conflict so you crash. After each crash you work (rest) your way back to your horrendous baseline just in time for something else beyond your control to flatten you.
Once you teach a more stable place, you can begin to pace. Do not push. Do half of what you feel up to, if you can figure out what half is. Rest is an investment in future wellness. Bank your rest.
Pace. Rest. Here I define pace:
Pacing is the most effective method of managing this illness. Very basically, it means deliberately stopping activity and resting at predetermined intervals. Doing things in chunks then resting, taking planned naps, things like that. Resting before you get active again—until you get back to symptom relief, or until you regain your baseline.
I have had at least two, probably three, major crashes in those years. During two of them I was bed bound for months. Each time, I did gradually improve and become functional again. It is not so for everyone. And if I push too much or contract another major virus or experience major stress for an extended time, I could crash again, and that could happen to me.
Aside from major crashes, at my now-best, I live in a state of wildly fluctuating illness, tuning out a sizable collection of symptoms which would be alarming to a healthy person, to varying success.
Things which are outrageous:
I have had it for at least 33 years. I have met almost no one who has even a general understanding of what I have. This includes medical professionals. You really can’t say that about many illnesses.
At first, when I was experiencing my first awful crash, I had no idea what was wrong with me. I remained clueless even though I consulted several specialists. So I lay in bed, with no idea if I was dying (I felt like I was), or how long it would last, or whether I would recover. It was terrifying.
I have had to connect my own dots and it took decades.
I have presented collections of symptoms to doctors who should have connected them and concluded ME, but who did not.
I have been diagnosed with depression and given meds, in other words, misdiagnosed.
I have been prescribed graded exercise, which is a prescription for worsening your condition, maybe permanently.
I have been told to go to somebody else. (I am not difficult.)
I have had to self-diagnose comorbid conditions and to understand their relationships to ME.
I have had to learn to identify and evaluate many symptoms, and assess each symptom’s seriousness on my own. Is this ME related or do I have something a GP could handle? Am I about to keel over or is this just that thing I figured out was POTS? (Or both?) Consequently, I do ignore symptoms most of the time which would be alarming to most people.
I have had to confront and learn to evaluate the alternative and the exploitative avenues of medicine, and sort out the useful from the garbage. That took years. It’s usually an expensive learning experience.
Friends and family:
My own family, my husband and children, are understanding and have given me all the support I’ve needed, and that’s saying a lot. When you cannot stand up long enough to shower or get food, when you can only endure another person in the room talking to you for a few minutes, you’re completely dependent on their grace. They believed me and I have no complaints. I have a few precious understanding friends. But if I move outside of that circle I only sometimes find the same comprehension.
People get impatient with your non-recovery. They are incredulous and scornful at your insistence on not recovering in what they think is a reasonable amount of time. People get well, right? or else they die.
People demand proof from you, in not so many words. They think you are malingering. Or else they call and never mention it, in which case neither do I. There is no room in their imagination for the reality of chronic illness unless they get one.