1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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All in a day's healing, Part 3

Blog entry posted by Dainty, Nov 19, 2013.


You have to understand, this is me on a bad day. I've been sleep-deprived for weeks and suffering noise exposure as I'm stuck in a house with people who don't get it and my sleep schedule is all over the clock. My brainfog has returned; I can barely hold a conversation and keep getting my online orders mixed up. I'm here on PR because I'm feeling like I need to talk to people who get what it's like to have your brain go offline. And be trapped in a sort of no-man's-land fatigue.

Yet here I am writing massive semi-comprehensive blog posts because I've been inspired by a few of you to share what's helping me and honestly I'm useless for anything productive right now. The kinds of personal breakthroughs I'm sharing are nearly an everyday occurrence for me, not some rare anomaly I decided to write about tonight. Tomorrow I leave to visit a cabin that's hopefully quiet and I may disappear for a while again. If I do please don't take it personally - just know that I'm off healing, with a smile on my face and a sparkle in my eye. Oh, how I wish I could share it all with you. I can', though -- it's not what would be healing.

So for now, I just offer you a hug. Take this moment. I know it's so rare people as ill as I was recover, but it's happening to me and it's the most amazing thing ever. I don't call this remission, because it isn't some mysterious good times that might disappear at any moment. No, the past 18 months have been the careful hard work of addressing fundamental issues in my body and I have no doubt that I'm capable of healing completely. Whether I actually do depends on the tools/environments available to me and of course my continued pursuance of health.

I wish I could offer you more. I wish I could write a book about my arduous journey to reach this point, with tips you could perhaps glean from if you choose a similar path. But currently my progress is still quite fragile and I cannot make even the tiniest of sacrifices for the greater good. I want to apologize, but I don't think I should let myself, do you?

I care a lot about you guys and will never forget what it's like to be in your shoes. Please know it's okay to feel towards me however you wish - happy, angry, envious, whatever. I expect some people will doubt my ME/CFS diagnosis or other aspects of my story. But I don't feel up to defending myself (yet?). It's important that I only hang around places that have a healing effect on me. So if I melt away, know that it's just because I've found a healing space elsewhere and am continuing the relishing of my new body and new life.

*Hugs* to each of you. Take care, friends. Whatever works for you, whatever helps, take care of yourself. Wishing each of you the very best, with tears in my eyes.

~ Dainty :hug:
Dainty

About the Author

Dainty became ill as a teenager and spent 7 years mostly bedridden from ME/CFS, life-threatening MCS reactions, extreme food allergies/sensitivities, cognitive impairment, fibromyalgia, episodes of temporary paralysis and various unexplained emergencies. The past couple years she has experienced profound improvement from various treatment approaches. She's now tackling independence and continues to pursue healing full time.
  1. madietodd
    SO HAPPY FOR YOU! Yes, yes, yes. It's amazing and wonderful how you share the perceptions and shifts that occur in deep meditative places.
    I selfishly hope that you keep coming back here, to share yourself and your journey.
    Hugs back, sweet lady.