Kate Quartz GENTLY (<-- super important) test your boundaries to find them. Don't assume just because you can't do ONE thing means you can't do another. Your energy & illness is unique to you. It won't make sense to others. But you can figure out how to function with it. 💝 #neisvoid

The paradox of needing the system to get support (dx, disability, etc)… yet the system not having adequate time to actually get to know you, your history, your current experience & dx… before casting judgement on you… Is mind boggling. #pwme #ActuallyAutistic #NEISvoid

"This illness is defined by loss, and we are losing everything, even our memories and our sense of who we are." My speech to the FDA at the Patient-Focused Drug Development Meeting on #LongCOVID is up. youtube.com/watch?v=Am2Fn8…

Dear pwme pwLC, I’m writing a book on my experience with light-moderate mecfs and long covid. It will be halfway between autobiography and philosophy and will be published in France in March 2025. According to you, what would be mandatory for me to talk about ? I want it to

Johann Margulies I think it could be interesting to discuss the challenges post-recovery. A few of us are navigating that space (e.g., myself, Melissa) and the complex juxtaposition of restored health and shattered life is something I'd not anticipated.

I’ve always been an athlete, and this is how I got through the last 10 years with severe exercise intolerance until I made progress. Learn your range. At times, my range was tensing my muscles in bed. Or one stretch. But the movement helped as long as I didn’t push beyond.

Melissa Yes, my experience exactly! I remember seeing, maybe 15 years ago, a documentary on paraplegic former athletes who visualized activity, which actually activated muscles. When minor flexation was too much, I visualized it. The micro-movements were always a morale boost.

I've been on 9 grams of taurine per day since 2018. I've experimented with phasing out most supplements since recovering, but taurine is one a handful that I don't ever plan to discontinue. It is such a powerful lever.

During my 9 years of chronic illness, I never called myself "sick". I just "wasn't feeling well". Rather than moping, I researched biochemical baseis of the diagnosis and addressed the root causes. I removed blocks, repleted deficiencies, and tinkered toward wellness.

The hardest part of chronic illness is often shifting our mindset from that of a victim death-spiraling into the abyss with no support whatsoever (I've been there, too) to one of an self-experimenter empowered by knowledge, community, and the belief that healing is possible.

Reminder: You got this.

“Those who are not able to work due to #chronicillness are not on vacation. They are instead, struggling every day to do simple tasks: getting out of bed, getting dressed, making a meal, bathing… They are often too sick to leave their homes.” buff.ly/4dxnh5L

Today insurance company denied a medication I prescribed well within my scope of practice because they didn’t believe I had the credentials to prescribe it. Our pharmacist had to fax over my CERTIFICATION to get it approved. I’m officially offended. How about the person who

Anita Moorjani was the story that inspired me. Found her in 2018 after realizing doc solutions had made me worse over time. I went 100% in on my own research. Experimented. Simplified my process. Trusted my body could resolve the root dysfunctions w/support. It works. 🤍

Same.

While severe, I swore I would go back to help those still suffering. That's the only reason I'm here. It was never my plan to stay long-term. I'm gradually losing touch with the experience of being ill, but still carry the trauma. It's become deeply painful to be here.

A phlebotomist was sent to my house to do a blood draw unbeknownst to me. My nurse explained I was busy and her response was "He is crippled what could he possibly be doing that's so important I can't do my job?!" I was on a business call with Microsoft securing $100,000 for

Why many who improve step away from the community: 1 — integrity gets questioned when sharing valid truths about what it took. 2 — receive accusations instead of curiosity. 3 — want to help but not willing to go through that abuse again.

Reminder: 💪 you are strong 💘 you are loved 😭 it's ok to not be ok 🍾 celebrate your wins ⚔ you're a warrior #spoonie #chroniclife

Y'all ever feel like you're just radiating pain? #chronicpain