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.
10 Comments
Ana, I’m so sorry you have to live such a difficult and isolated life. Praying the Lord will bless you with continued healing. Cast all your cares on Him for He cares for you!! Love and Hugs to both of you!!
July 1, 2017 at 7:40 pmAww… Thank you so much Grandma! Amen! 💕Love you and miss you!
July 2, 2017 at 12:18 pmWow. I just got back from a two hour hike in the woods, up to the snowflower forest, thinking about this very thing.
How bizarre it is that what I most need is exactly what I most want to do.
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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)
July 1, 2017 at 8:48 pmThat’s amazing Erik! I just love that quote. 😊
July 2, 2017 at 12:19 pmPraying for you Ana, sending hugs your way <3
July 1, 2017 at 9:20 pmThank you so very much Natalie!
July 2, 2017 at 12:19 pmAna,
I have spent much of yesterday and much of today reading all of your blogs starting with Day 1. My husband finished them all last night! Wow, so much helpful information…thank you, thank you, thank you! And, I actually feel like you are family now! 🙂 We’ve read most of, A Beginners Guide to Mold Avoidance and tomorrow I want to read Sara’s e-book.
It has only been a few weeks ago that this Mold Avoidance really jumped out at us to such a “great” degree. It’s as though I feel convinced that it is what has kept our daughter as such a severe level. 🙁 I told my husband, “Mold Avoidance feels almost as difficult as going to the moon!” But, we are praying about our journey!
Thank you for sharing so candidly. Gosh!! It’s SO very hard. We really, really know how very difficult it is. I feel the pain of your struggles, then I rejoice when you guys have a breakthrough!!
We are with you guys…and are faithfully following you with each blog,
Nanette
July 1, 2017 at 9:52 pmAww! This might just be my favorite comment ever! Wow! Thank you so much for your kind words. I pray you can get clarity about how you can do what is best for your daughter’s healing. It’s so hard. Hugs! 💕
July 2, 2017 at 12:23 pmPraying God’s Blessings on you Ana! The path through the labyrinth of your illness will become clearer and clearer as it already has. It’s hard but you’ve done so well!
July 2, 2017 at 3:43 pmContinued prayers for strength during difficult days. Much love❤️
July 6, 2017 at 9:48 pm