iiinova — where your digital self keeps evolving

Sugar Bean @sugarbean.bsky.social · 03/06/2026

I’ve got a short list: 1. F 2. U 3. C 4. K 5. O 6. F 7. F

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Sugar Bean @sugarbean.bsky.social · 24/05/2026

That’s a good analogy- it felt just like that

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Sugar Bean @sugarbean.bsky.social · 24/05/2026

Ok body, I won so let’s go to sleep for the night. Body: Ehhhh… What do you mean ehh? I’m EXHAUSTED! No, brain and I wanna be awake now. WHAT? No! I HAVE to sleep! No we wanna paint and think about guys and eat donuts and jump and… Heart: YEEAAAHHH Me: oh please no Brain: 🤫 #MECFS #POTS

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Sugar Bean @sugarbean.bsky.social · 24/05/2026

I don’t wanna sleep. My body: Well you’re gunna. No please I just want to stay awake and do something fun. Nope. Sleepy now. NO I’ll fight you. K fine. But you’ll be too tired to do anything anyways. But I’ll still try… #MECFS #SevereME

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

So so much of life isn’t soft for me. When it comes to illness, I sleep on nails and walk through fire. Every damn day, hour, and minute. There isn’t one thing that is not affected in my body and my life. I hold the hands of grief and loss as I walk through life. #MECFS #POTS #SevereME

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

I need to finally just let it out, about my illness, what I’m going through, how I REALLY feel. It might be messy or not, I probably won’t know which, but there’s got to be some part of my life where I’m able to exist without softening things for others.

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

I know people don’t know how to interact with me and my illnesses. But I’m so tired of having to protect myself, of not saying anything, always giving others grace when I feel an emotional slap. She didn’t have bad intentions, but I want to say SHUT UP! #MECFS #POTS

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

It’s my fault. It’s me not protecting myself- I knew I’d get someone like that but I didn’t listen to that bug in my head. This is why I don’t talk about my shit, cuz most people don’t know shit about the shit I have to deal with. #MECFS #ChronicFatigueSyndrome #POTS

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

“Just stretch and swim it’s worked for me! Good luck!!” (Paraphrasing) Are you kidding me 😑 Yes I know it was well intended Yes she was trying to be helpful But being able to regularly swim, stretch, retire, work, set up your life ARE ALL THINGS I CAN’T DO. Drive by helpfulness is not helpful.

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

I got the “well you’ve got a lot going on, but here’s what I do” from someone that missed the part where I added that I did not want any advice. Their advice? They set up their retirement so they could swim in pools year round! WELL HOWDEE HOO I’ll be lucky if I’m not out on the street at her age…

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

I made the grave error of asking (an intentionally rhetorical, but apparently direct and simple) “HOW???” on a post about having to exercise after being diagnosed with severe osteoporosis while having #MECFS #POTS (amongst a few other things.) Of course it brought out some “helpful” advice…

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

The line of “did I even do anything” and “oops I did too much” is razor thin. #MECFS #ChronicFatigueSyndrome #POTS

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

Your life and my life and abilities are very different.

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

I do have a therapist I like so I’m grateful for that. Until we can’t pay for my expensive af insurance anymore though LOL But even doing an hour of therapy FUCKS MY BODY UP. I’m exhausted before, during, and after. But it helps with mental health sooooo

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

I just want to be NORMAL! Not have #MECFS and #POTS and this other illness and that other problem and this and that and this and that… WHY would I talk to people about a stressful illness and have that be their association with me? I just want to be A REGULAR STUPID HUMAN Instead I’m really ill

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

I WANT to talk about it irl, but people will either be: - uninterested - give me advice (lol I can’t do 50 squats a day MARSHA) - use it as a reason to talk about themselves - actually care but then our connection is due to my illness and not who I am. So I just don’t say anything. It all hurts.

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

You’d think that I’d want to shout to everyone I know about my recent #severeosteoporosis diagnosis to everyone I know, but I find myself not telling anyone (except parents). When you have “controversial” illnesses like #MECFS and #POTS you learn to keep your mouth SHUT. People judge, badly.

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

Because my doctor said the one of the best things you can do for severe #osteoporosis is exercise. Fuck meeeeeee #MECFS #POTS #SevereMECFS

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

And as always I’m not looking for advice. I’m just trying to move around more, walk more, a squat or two here and there. And of course just a little extra has made me super fatigued (due to #MECFS / #POTS) but I have to keep going. I will just have to be tired I guess. I don’t really have a choice.

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Sugar Bean @sugarbean.bsky.social · 23/05/2026

Bad test results recently- my bones are FUCKED. Severe osteoporosis in my early 40’s. Being sedentary with #MECFS, high salt diet with #POTS, and post menopausal from being a #FragileXCarrier will do that. I’ve gotta try new medicines (terrifying) and completely change my life- exercise. HOW??????

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Sugar Bean @sugarbean.bsky.social · 11/03/2025

Yeah you never know which will give out first, the body or the brain.

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Sugar Bean @sugarbean.bsky.social · 18/01/2025

You’re not stupid, you’re sick. Don’t let this illness make you feel bad about your cognitive ability. #MECFS

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Sugar Bean @sugarbean.bsky.social · 18/01/2025

We don’t either Rylee. It’s a mystery to us too & it involves constantly listening to our bodies and readjusting our strategies and hopes. I’ve had MECFS for almost 20 years and the way I have to treat my body can change day by day. You’re not alone in feeling that this illness is confusing as hell.

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Sugar Bean @sugarbean.bsky.social · 18/01/2025

These guys are the real deal. Both are brilliant and have helped this community so much. Please consider donating to help further research for #MECFS ! What if Dr. Davis found the cure for this illness?

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Sugar Bean @sugarbean.bsky.social · 27/12/2024

All the way off! I’m with you, chronic cousin.

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Sugar Bean @sugarbean.bsky.social · 26/12/2024

SCIENCE will set us free from this MECFS hell, NOT wishful thinking. If that were the case no one would be sick with this illness.

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Sugar Bean @sugarbean.bsky.social · 26/12/2024

If anyone tells you that in order to heal from MECFS you have to “believe you can” they’re selling bs. You’d be hard pressed to find a group of sufferers who have more resolve and desire to be healthy.

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Sugar Bean @sugarbean.bsky.social · 17/12/2024

Thank you so so much for this!!!

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Sugar Bean @sugarbean.bsky.social · 01/12/2024

I had to cut off or was dropped by family due to MECFS. I feel you.

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Sugar Bean @sugarbean.bsky.social · 01/12/2024

If I could be healthy I think I’d be sad at first because I’d finally be able to be in the world and see all the milestones I had missed. I’ll never get them back. #MECFS #SevereMECFS

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Sugar Bean @sugarbean.bsky.social · 01/12/2024

I wanna run I wanna go on hikes I wanna shop all day I wanna work and cook my dinner I wanna make love I wanna wear perfume I wanna clean my house I wanna do art and music all day I wanna sleep and feel better I wanna not have MECFS

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Sugar Bean @sugarbean.bsky.social · 01/12/2024

I’m so sorry that you’re one of us

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Sugar Bean @sugarbean.bsky.social · 15/11/2024

Ah yes, I finished my entire to-do list for the day, thank goodness. #MECFS #ME #CFS

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Sugar Bean @sugarbean.bsky.social · 20/06/2024

Doctors really really need to differentiate these two, and approach researching the recovery tools of each type of LongCovid differently. Both groups seem to be suffering from this, to the detriment of the patients involved.

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Sugar Bean @sugarbean.bsky.social · 20/06/2024

I’ve seen that there there may be two groups of our LongCovid brethren, those who seem to have matching symptoms of MECFS, and those whose organs (heart, lungs, vascular, nerve, etc.) have been damaged from the Covid virus.

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Sugar Bean @sugarbean.bsky.social · 20/06/2024

The amount of symptoms between LongCovid and MECFS are huge, to the point that many people (including myself) think they are basically the same illness. You would THINK that researchers would be looking at the MECFS data. But no, it’s the same studies, over and over.

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Sugar Bean @sugarbean.bsky.social · 06/05/2024

8/ I don’t know where to leave this except that my situation is what it is, because for me, that is all it can be. Nothing I can do about it but do the best I can I guess.

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Sugar Bean @sugarbean.bsky.social · 06/05/2024

7/ For each of these situations I have to say no again and again to any “suggestions”, then tell people why all their methods won’t and haven’t worked. People don’t like this. After they run out of ideas they check out and I’m left battle scarred from being vulnerable and getting nothing in return.

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Sugar Bean @sugarbean.bsky.social · 06/05/2024

6/ I’ve even tried texting the suicide number 988 when I was really in a bad state. They were kind, but suggested a Christian 12-step pain group and another random pain group which isn’t run by a therapist. I needed empathy and a listening ear THEN, not suggestions for later. And I’m not Christian.

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Sugar Bean @sugarbean.bsky.social · 06/05/2024

5/ No, I can’t join that virtual support group. Why? Listening to other people’s sad illness stories is too depressing and I can’t let myself get into that emotional state. And uh, lots of people don’t believe in ME/CFS or they give really shitty unwanted advice. Yes, I’ve tried Vitamin C 🙄

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Sugar Bean @sugarbean.bsky.social · 06/05/2024

4/ Online friendships? I’ve found that they either are online because they need support themselves and can’t get it in person or they have no fucking clue how to do irl relationships. After multiple people burning me I won’t do that anymore. I just wanted friends, but ended up being the support.

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