Post-exertional malaise: the crash that happens after every physically or emotionally intense event. This seems to be particularly strong after emotional intensity more than physical intensity. Orthostatic intolerance: dizziness, lightheadedness, seeing stars, nausea, and/or fainting caused by standing or being upright for too long, or from physical exertion.
I’m seeing the patterns more clearly now. It goes like this:
- I know I have a Big Event coming up (convention, book event, intensive, workshop, trip, etc.)
- In order to prepare for it and not have a flare, I am careful about how/where/when I expend my energy. To me, it feels like “taking it easy” in comparison to my “normal” life
- I feel great for the Big Event. I have the energy I need, and am able to make choices even during the Big Event, staying aware of my energy and pain levels, sometimes intentionally choosing downtime over going out to do more
- I arrive back home, and within 24-48 hours, I am EXHAUSTED. Bone-deep exhaustion. Can’t-stay-awake exhaustion. Sleep doesn’t help. It doesn’t matter how much downtime I opted for during the Big Event. I have no real choice but to sleep as much as 20 out of every 24 hours.
- Exhaustion and dizziness continue for several days. Even sitting up is too exhausting. Back support is essential.
- Depression and anxiety rear their heads. It comes on quickly. I no longer remember what it feels like to be in alignment with love and joy and gratitude. It is all I can do to stave off urges to self-harm and thoughts of suicide. It’s easy to believe that no one remembers me, much less cares.
- In an attempt to not isolate, which I know exacerbates the self-harm tendencies, I reach out to safe people. But I immediately regret saying anything, and resolve to keep my feelings and thoughts to myself until I’m better
- Then the pain hits. Often starting in my hands and feet, it quickly moves into arms, shoulders, legs, hips, back, neck. Headaches become commonplace. I’m sensitive to light and sound. I cannot focus or track well.
- The pain continues for several days
- At some point, I catch glimpses of that joy and love and gratitude again. I remember I am not alone. I remember that I am loved.
- After as much as a week, I am able to leave my bedroom again, though I’m often trembling and unsteady. Dizziness continues when I’m standing or upright. It’s not yet safe to drive.
- Then, as quickly as it came, it’s gone. I feel back to “normal.” I continue with my life until a week or two before the next Big Event, at which point I switch to “take it easy” mode to hopefully offset any flare right before the trip.
Both post-exertional malaise (PEM) and orthostatic intolerance (OI) are common with fibromyalgia. They’re also key components of myalgic encephalomyelitis (ME), formerly known as Chronic Fatigue Syndrom (CFS). It’s not uncommon for people with fibromyalgia to also have ME. Neither has any cure, but symptoms can be managed.
The management for PEM? Doing that “take it easy” self-care ALL THE TIME. Not just in the two weeks before a Big Event.
I don’t need to skip the Big Events. In fact, I’ve had a higher percentage of pain-free days when I have numerous Big Events than I do when I’m playing small.
It’s about pacing. Balance. Harmony.
I recently learned that my parents were wrong: I’m neither shy nor an introvert. The real me was buried under layers of PTSD-induced social anxiety and fear of rejection. I’m extremely sensitive to energy, and I’m energized by being with another person or small groups. (Large crowds to tend to tire me out.) My Big Events nearly always involve lots of small groups and one-on-one time. It’s no wonder I love it!
Even as I step into my dream of helping people connect with their guides, that also needs a balance. Solitude. Writing. Meditation.
In 2016, just a few months after I discovered Supernatural, but before I knew anything about the cast, I went through one of these times. At the time, I just thought it was a depression, with a side of exhaustion and pain. Now I think it was one of these flares. But that was the first time I thought about it in a different way.
I called it molting, and I wrote about it here: http://sheynagalyan.com/2016/10/23/wings/
I wrote, “Something about this metaphor gave me hope. That maybe this was a natural process, and my responsibility is to make sure I have a safe “molt.” That I eat enough to sustain my energy. That I rest as needed. That I take the time I need to be alone. That I accept I will be out of sorts and off my game. That I recognize that for this period of time, my freedom will be curtailed, my beauty in flux, my compassion needing to be more self-compassion, and my strength sorely tested. During this time, I’ll feel unable to fly, helplessly grounded, but appreciating that freedom even more when I get it back.”
In the fibro/ME communities, this pattern is called “push/crash.” I’ve already made considerable progress moving away from pushing, but I may have more to do. My changes to my way of eating have helped a great deal, and I can see where I can shift my perspective more into balance and pace myself accordingly. I may not be able to avoid the molt, but I may diminish its frequency or severity.
And if you also are struggling with this sort of pattern, I hope this helps you feel not so alone or misunderstood.
P.S.: this post is for educational purposes only. I am not looking for advice, treatment, referrals, supplements, or any other solutions. I am sure it comes from a place of love and you not wanting me (or anyone else) to hurt, but I’m still not interested. Thank you for respecting this boundary.