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

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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 · 18/01/2025

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

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 · 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 · 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 · 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

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

The common ways of seeking support/connection don’t work for me as someone with long-term severe ME/CFS. Therapists, online friends, support groups, even the suicide hotline all didn’t work for me. I sure tried. What I know is that I’m on my own, and that’s just how it is. Here are my experiences👇

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Sugar Bean @sugarbean.bsky.social · 25/04/2024

Severe MECFS means intense isolation. It means not being able to have irl friendships. Relying on caregivers for your only face to face social interaction. MECFS means being inside, and in bed all day. Same view. Same sounds. Same loneliness. Same day. Over and over and over.

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Sugar Bean @sugarbean.bsky.social · 08/04/2024

@tomkindlon.bsky.social thank you for putting so much work into sharing the research info. Reading about the latest discoveries gives me hope!

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Sugar Bean @sugarbean.bsky.social · 08/04/2024

I went from Severe to Very Severe according to this chart… sigh.

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Sugar Bean @sugarbean.bsky.social · 19/03/2024

Why are some people so hell bent on insisting #MECFS is a psychosomatic disorder when it isn’t? Like why? What are you gaining by harassing sick people? Why are you trying to gain from them?

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Sugar Bean @sugarbean.bsky.social · 09/03/2024

I had an unfortunate interaction with someone who has #LongCovid recently. They took the opportunity to privately message me and trauma dump- by repeatedly telling me how they wanted to un al*ve themselves.

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Sugar Bean @sugarbean.bsky.social · 05/03/2024

THIS JUST IN: Some #MECFS and #LongCovid researchers who shun all established research and decide to start medicine from the beginning make the groundbreaking discovery that these two illnesses at one point have low iron! GASP! That means: tHe LoW iRoN CAusEs iLLnesS???

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Sugar Bean @sugarbean.bsky.social · 05/03/2024

Oh my gosh #LongCovid and #MECFS is caused by low iron levels??? Why didn’t anyone who has ever had this illness try just taking some IRON??? Like duh! I’m cured now!!! ORRRR we’ve already tried everything that’s out there, for fucks sake.

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Sugar Bean @sugarbean.bsky.social · 04/03/2024

Two areas researchers need to focus on for #MECFS as suggested by someone (me) who has had this illness for almost two decades:

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Sugar Bean @sugarbean.bsky.social · 03/03/2024

WHY OH WHY are researchers still doing graded exercise trials for #MECFS ? They haven’t ever worked to help the illness, they still don’t work, and guess what- they won’t work in the future! #CFS #ME

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Sugar Bean @sugarbean.bsky.social · 24/02/2024

To all of those kind people who are giving hope by sharing the latest #MECFS and #POTS research, could you please do me a favor- in your descriptions could you dumb it down a little? Holy smokes I’m glad you’re excited but I’m like

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Sugar Bean @sugarbean.bsky.social · 22/02/2024

I’m always scared. Scared of getting a bad flu, bad food poisoning, or needing a medical treatment that inadvertently makes my #ME/CFS and #POTS much, much worse.

Sugar Bean @sugarbean.bsky.social · 14/02/2024

Happy Valentine’s Day to those who are too physically ill to have or maintain romantic or platonic relationships. You’re not the only one! #MECFS #CFS #POTS #chronicillness

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Sugar Bean @sugarbean.bsky.social · 14/02/2024

When was it decided that I was the one that would be taken care of? I don’t want that. *I* want to be the one to take care of everyone else. But I can’t. #MECFS #CFS #POTS #chronicillness

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Sugar Bean @sugarbean.bsky.social · 14/02/2024

I have an elderly family member who needs help right now, and I am unable to assist my parents with that in any way except for moral support from my bed. I am a DOER and with #MECFS and #POTS, I can’t and I feel impotent. *I* want to be taking care of everyone, not the other way around.

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Yes I would like to cancel my membership to #chronicillness, thank you.

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I’m in the car right now on my way to an appointment (not driving of course) and doing my best to keep my body in a relaxed position. No matter what I do or don’t do though, just this drive alone will tank my energy levels.

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In the decades I’ve had and been around #MECFS #CFS , I have never seen SO MANY studies that are finding such big puzzle pieces to this illness. I really think there will be some sort of breakthrough within these next few years.

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Time to take a sit down shower- my enormous energy cost. I wish I could take one where I felt better after, and not so much worse! Can you imagine??? #MECFS #CFS #POTS #MCAS

I get a liter of IV saline every week for my #POTS symptoms, and I can always tell as I get closer to my appointment that I need it: I get dizzy easily, my heart rate races when I’m upright more, and my digestive system, well doesn’t really like me much.

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Sugar Bean @sugarbean.bsky.social · 12/02/2024

I’m really grateful for mobile games and handheld gaming systems, when I’m too tired to be upright it helps pass the time and lets my body be still and rest. #MECFS #CFS #POTS

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What is sleep Baby don’t hurt me Don’t hurt me No more

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I remember talking to a person in the infusion center I go to who was there getting chemotherapy and as we were chatting I realized they were able to do more and had a better quality of life than I did. THAT is #MECFS

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I want to do something, anything. But all I have energy for right now is to lay here and type into this fucking phone. If I try to do anything else, I will pay for it. Maybe later today, maybe tomorrow, but my body will make me pay. #MECFS #POTS

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Believe me, I hate being trapped to my bed, my room, and my house. There’s nothing more I want to do then to be able to travel, eat anything, and to decide what *I* want to do with my life. Instead, my illnesses decide for me. #CFS #MECFS #POTS

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CFS and POTS is wanting to do something, standing up to go do it, and quickly realizing that even being upright is too much physical exertion. You have to turn right around and go back to your bed, and rest again.