Can you explain what it’s like?

Remember the last time you fell ill with the flu, or something that exhausted you? After a number of days of severe weakness you thought, “Ok, I’m getting better … I’ll get up and …” (go to the store, make some food, take a shower). Soon-after you felt dizzy and exhausted and returned to the couch/bed thinking, “Ooo, I overdid it.” 

That’s my life. Every day. Except I no longer push myself … if I do that I can wake up exhausted!

One of the easiest ways to understand the chronic exhaustion (which is literally the tip of the iceberg, in terms of multiple-malfunctioning physiological-neurological issues) part of ME/CFIDS, and how I have to manage my daily use of energy is through reading about the Spoon Theory or The Energy Envelope Theory.

There were previously years of daily pain, exhaustion, emotional and physical overwhelm (imagine a really bad flu for years) and I won’t sugar coat it: there was such neurological brain-fog overwhelm, with so much stiffness, that it would (and can, a lot less these days) drive my mind to believe that’s all there will ever be. It got so bad that I went through years of clinical depression and suicidal feelings.

Imagine that you’ve stayed up all night, you have the flu, there’s a car alarm going off just outside your door, your dog is barking, and you haven’t eaten in 48 hours. That’s what it can feel like if I haven’t managed my energy output.

So, what do I do?

So, I’ve lived with the flu 24/7/365 … for almost 3 decades.

I see MD’s, I get massage, see a TCM, go to a chiropractor, see a hypnotherapist, meditate, and I have a lovely life within my energy envelope. There have been periods of greater illness and less, depending on what I’ve been exposed to (mold/depression) or where my life stress is currently residing.

I work with a “functional medicine” MD who specializes in “acquired environmental illnesses” – the hope is she can help me reboot my brain and body, but in all honesty I don’t expect to ever be ‘back to’ what I once was.

I do what you do: I weigh out what I can and can’t get done in a day (read the Spoon Theory page). I see MD’s, I rest, I don’t hike, swim, bike, run or anything that overtaxes my immune, energy, or emotions — anything (which is everything) that uses up energy in you uses up 50x the amount of energy in me … you can ‘recharge’ overnight, that same recharge may take me 3-10 days.

Aren’t you bitter?

The thing I close with is this: adversity will either make me complain and look at the shit side of life, or teach me that life is amazing and full of joy, wonder, and love – on the days when CFIDS has me by the throat I can, sometimes, remember this … when I can’t I do remember: “This too shall pass.”

I call CFIDS the "spiritual meathook” because I’ve had to adapt and love life on life’s terms, not mine. Things that might bother the average person (pain, exhaustion) are issues I’ve learned to live with, like a messy roommate! I’m no saint but I do have a much higher tolerance for what others might consider suffering.

It’s a karmic journey: one that has taught me a lot about privilege, gratitude, and appreciation.