These last two days have been difficult. Nothing terrible happened, I just haven’t had much physical energy or emotional resilience. Which means I’m very tired and I’m crying a lot. I worry that having Ramona is subtly affecting me even though I haven’t noticed any distinct reactions.
The truth is, when I start to slip back into sickness the work that it takes to pull this mold avoidance thing off feels overwhelming… no, crushing. I’m so weary right now!
I wonder what the future will be like. Will my body always be this fragile and require all this special attention? Will I forever spend half my waking life doing laundry by hand? Will I always have to cook outside in the wind on a tiny camp-stove? Will it always be this isolating? Will I ever have time to reconnect with friends? To serve and help people? To pursue other projects?
I’m thankful that when I’m discouraged I can look to others who have walked this path ahead of me. The stories of people like Sara Mattson, Lisa Petrison, Julie Rehemeyer and Erik Johnson tell me that mold avoidance will probably always by a part of my life but no, it won’t always be this hard or this isolating. Things will get easier, I’ll get stronger, I’ll be able to tolerate more exposures. I just need to hang on.
I can’t even imagine what it was like for Erik, ME/CFS prototype and mold avoidance pioneer, to walk this road all alone for the first time. So much courage and determination!
I came across this quote from Erik yesterday that I wanted to share with all of you. It sums up how I’ve been feeling.
“I am working, but I am neither healthy nor living a normal life.
The weird thing about my situation is that my immune profile is still completely shattered, yet as long as I avoid this one stupid thing that mysteriously showed up in Incline Village in 1985, I can climb mountains.
If I fail to practice an extraordinary level of avoidance, I fall apart within days. So it’s a very odd kind of recovery.
I am forced by this weird illness to spend my time hiking, biking, climbing mountains, seeing beautiful pristine places, and avoiding the toxic plumes which are rampant in “civilidevastation.”
Still, it beats being dead or disabled. I’ve managed to get a lot of life back, much more than I dared hope for.”
-Erik Johnson (2011)
By the way, Brett and I made a beautiful PDF of my favorite resources for suffering souls. I created the content and he made it look fancy with his superduper graphic design skills. It’s available for free to my email subscribers. Click here to sign up and receive 5 Resources for the Suffering Soul.