For the last several years, I’ve been struggling with a major health issue. My diagnoses include a range of alphabet soup, but the primary issue is a “central sensitization syndrome” called Myalgic Encephalomyelitis (ME/CFS).
This affects my central nervous system and energy production, and the primary symptoms are:
- debilitating fatigue (depletion) that does not ease with rest/sleep
- post-exertional malaise (PEM), which is a fancy way of saying when I exert too much (physical, mental, or emotional) I “crash” (see more below)
- cognitive challenges (severe brain fog, memory issues, slow thinking/processing, inability to concentrate)
- chronic pain (random and severe)
- misc other issues – too much to list – pesky things like random blurry vision, insane itchiness, etc.
So what is a crash? It’s like having the flu. Literally. All my symptoms get worse, and I’m completely unable to think, to move, to function. When I am crashed, I can’t leave the house, I can’t get off the couch, I can’t prepare food. I can’t so much as think my way clear to make a shopping list.
One of the hardest parts is trying to sort out how much I can do without triggering a crash. It is a moving target and super hard to predict. The effort to remain within my safe zone is called “pacing.”
So what causes ME/CFS? It’s unclear, but it is thought that it can be triggered by trauma, chronic intense stress, or a viral infection (like COVID – you may have heard this referred to as Long COVID”).
The future is unclear, but it is probable I will always have to deal with this, though it may get better or worse. Some people are bedridden. Some people go into remission. It’s estimated that better pacing can help prevent crashes from getting more severe over time.
As a person who has always been heavily involved in the community, working, volunteering, and using my brain to make a living and enjoy life, it’s been quite a challenge to find and live within my safe zone while actively trying to expand that safe zone as much as possible. It feels like an unsolvable puzzle.
Another key feature of ME/CFS is that it can be an “invisible” illness. That means that many people would never guess what’s going on by looking at me.
If I’m in public, it typically means it’s a good day (i do have good days!) and I’m not currently in a crash. I can fake being well for short bursts – when I am out, I’m going to smile, laugh, and talk to people. I may force myself to walk “normal” and pretend I have no pain because hell yes, I’m going to suck it up in public as much as possible. It’s called “masking.”
Of course, masking takes a ton of energy, which increases the fall-out.
Things have progressed to the point where I’m having to take extra measures in order to protect my energy so I can keep up with the basics and to maintain a semblance of quality of life.
I’m sure you’ve all seen Jeff doing the grocery shopping, getting the mail…doing all the things, really. He is an amazing support system, and I’m so, so thankful for him. I am also so fortunate that I have (had) a job with outstanding health benefits, including long-term disability insurance.
But quality of life, for me, includes getting out into the community when possible. I’m starting to use mobility aids. I have a handicap parking pass, so I can use my energy IN a store instead of crossing the parking lot. I now have an electric wheelchair I can use in stores, or to “walk” down the bike path with the dogs, or to do a few errands in town. I can even get out for fresh air when I’m a bit crashy! I’m looking at getting an electric scooter to expand this ability, as I avoid driving as much as possible.
Lastly: I’ve found my way to an AMAZING medical clinic that specializes in this sort of issue, and I have excellent support. Their clinic is extremely modern and open-minded and puts on multiple sessions a week (by video) on both traditional and more unusual methods of treatments.
Their speakers range from Occupational Therapists to Naturopaths, and sessions have included yoga, meditation, nutrition, supplements, and pretty much anything else one could imagine. I’ve tried almost all of it over the last couple of years (Who? Me? Type A?); some has helped, and some has not. No miracles yet. 😅
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