@SpoonieCult Profile picture

Melissa

@SpoonieCult

Leading ourselves through the illness & ND experience. Hi I’m Melissa. Comedian to some. Total drag to others. 🧟‍♀ Uniquely human & neurodivergent. 😘

Joined April 2016
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How would you describe your relationship to your body as a #spoonie #chronicillness #ChronicPain patient?


Great ways to explain hEDS in this post for fam/friends who don’t understand. Also patient folks, please keep in mind many hEDS folks can see long term improvement in their collagen/fascia strength by decreasing environmental toxin, and pathogen load.

I understand I have hEDS but I still don’t fully understand it nor do I understand how to explain it to my friends when they ask. Can anyone give me a good explanation of it that I can share and why it causes fatigue and pain?



Melissa Reposted

Hearing someone had a remission after 18 years of severe M.E gives me hope. Something changed biologically for that to happen. It’s more proof it’s not permanent. No matter how dark literally and figuratively life gets living with this disease there’s still a glimpse of light.


Melissa Reposted

For years, I was too ill to get out of bed. Now, I'm well enough to not only walk, but to carry my 4-year-old niece on my shoulders. Keep the hope. Recovery is possible. I'm rooting for each of you! 🌞🌷💖🛝

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In times of pain, grief and crisis — which I can see many are feeling right now — the smartest thing to do is mind the stories you tell yourself. Breathe. Tell yourself it’s going to be better than you are currently fathoming. That is how you take care of yourself today.


What he said.

Would love to make a political comment today, but I don’t feel I can given how heated a topic it is. So I’ll just say that I hope whether in a win or a loss, we can see across the isle at the intentions others have, so we can find ways to work together instead of villainizing…



Melissa Reposted

Exactly, in other words they are medicating distress rather than approaching it from a social cultural framework whereby looking for causal evidence and working on the issue


I also would add environmental factors to this list since we frequently metabolize chemicals differently. They seem to awaken/exacerbate these problems. As I heal, my symptoms have ceased. But they can pop up again if I am “normal” sick, or the weather does something funky.

It’s POTs Awareness Day. Why is POTS so common in hEDS / HSD? There are theories: • Stretchy veins allowing blood pooling • Neurological reasons - overactive sympathetic nervous system potentially due to MCAS • Small Fiber Neuropathy leading to autonomic dysfunction



Melissa Reposted

Yes!! After my onset infection, my initial attempts to get to 100% were going organic, no processed food, replacing teflon with stainless steel, no paraben, no harsh chemicals, a berkey water filter, etc. 😆 Nothing noticeable happened, but I believe it lessened the total burden.


Yesss! AND I’ve improved all of these symptoms over time as my body has become more properly supported in every area of life (ngl: it’s work). So we may be prone to them, but I think it’s also important to know we can heal / improve our quality of life too.

Hypermobility If you have repeated infections, illness, tiredness pain, dizziness clumsy allergies, ‘anxiety’ stomach gastro issues and more you might be neurodivergent! Join us 😀♾️🦓sedsconnective.org #EDS #HSD



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