Better. Not necesarily okay.

Today I watched that amazing TED talk by Jennifer Brea for the first time.

And it all comes flooding back. The non-stop wall of pain. The crushing fatigue, so severe and causing so much suffering I think it should be labeled a form of pain, too. The desperation. The confusing mish-mash of symptoms that ebbs and flows with no discernible predictability. Years of not seeing the light of day. The loneliness of extreme isolation, when I couldn't tolerate conversation of any kind. The fog of trying to live with a brain that doesn't work, memories only seen as through a thick veil, barely discernible. Even feelings of memories lost, or evidence of such with no feeling attached, all remnants of it apparently missing entirely from my brain.

It comes back and I try to push it away. Because that's not me anymore. Because I'm one of the lucky few. I found a treatment that works for me, and I'm getting better with every hope of it continuing.

Because nowadays if I do everything right, I generally don't have symptoms. Which is far better than I ever could have dreamed way back then.

And I push aside the memory of just a few weeks ago, when I literally skipped and danced my way in to the movies, having a good day with lots of energy, and continuous flashing strobe lights did me in. I could tell my body was in a state of shock. I couldn't speak afterwards or during the car ride back. By the time we arrived I tried to do the stairs and my legs were collapsing on me. I crawled 2 more steps until I couldn't even do that. So confused, why was this even happening? And so fast? My boyfriend finally lifted my dead weight into the bed, me completely unable to speak or assist in any way.

It was far from the first time. It won't be the last.

Most days I get to pretend I no longer have it. Heck, my own primary doctor doesn't believe CFS is "real" and tells me all those years I was bedridden it was "probably just a mineral deficiency". But I stick with her because it's free medical care for all the secondary stuff. I rarely mention CFS to non-medical persons anymore, I just say it was an "unknown condition" that I've been recovering from the past 5 years.

People like the sound of recovery.

The truth is more than they want to hear.

The truth is more than I want to hear.

I had hoped I could run away with my health and never look back on those traumatic times and that illness that now gives me PTSD flashbacks and nightmares. Maybe someday I can. In the meantime, I have to admit, although I'm better, I'm still here.

And I hope someday "here" can feel okay.


Great blog / post.....I can so relate to feeling "great' with a sudden fall from joy. I am in a deep relapse now and struggling to see the light....but remain "hopeful". Oh what a wild elusive illness this ME/CFS is.
Dainty, I noticed your recovery post a while back and you attributed it to cranial osteopathy. Have you been using this treatment since your relapse? There are theories some of the effects of this treatment are due to impact to the endocannabinoid system. When you read what this system regulates the connections to CFS are shocking:

I wonder what impact CBD oil would have.

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