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@BJEWB

Disability Awareness. Long Covid since Jan 2023.

Indianapolis Katılım Temmuz 2011
676 Takip Edilen878 Takipçiler
Brooklyn
Brooklyn@BJEWB·
@_VFK_DAA @seanstidston @Lwardo4 Interesting because I would love to truly not have ME but I just know exertion tends to make me worse and I get all the flu like symptoms that follow exertion. So I just treat it as if that’s what it is. Doctor I’m working with says I have ME subtype of LC but who even knows.
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WACM
WACM@_VFK_DAA·
@BJEWB @seanstidston @Lwardo4 No, it could be that your exercise tolerance has simply decreased. If you overexert yourself and your body, including organs, muscles, and nerves, experiences a constant lack of oxygen, that can lead to exactly these kinds of effects.
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L Ward
L Ward@Lwardo4·
This is incorrect While a hallmark of ME, PEM is not exclusive to ME In medical circles, the conversation around PEM has expanded significantly —especially as we’ve seen it crop up in other chronic conditions, e.g. Lyme disease, Fibromyalgia, Gulf war illness, EDS, POTS and LC
Todd Davenport@sunsopeningband

People miss two important things when it comes to ME, which confuses the picture of Long Covid and other conditions: 1. PEM is best known and characterized as part of ME. It is incorrect to say PEM is inherently part of other diseases. 2. People can and do have multiple things.

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Living Ghost
Living Ghost@I_need_a_razor·
No other disease leaves someone in a dark room for decades on a feeding tube due to overexertion. Gtfo of here with that nonsense. I don’t like the term post exertional malaise (PEM) but that’s the reality of overexertion when you have myalgic encephalomyelitis not other diseases
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Brooklyn
Brooklyn@BJEWB·
I really wish the group of us that all talk the most on here could just live in our own small beach town together. And that we could have butlers and infinite access to meds and IV therapies. The weather would always be about 60-75 degrees.
GIF
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Brooklyn
Brooklyn@BJEWB·
@_VFK_DAA @seanstidston @Lwardo4 From my big crash in January. Wouldn’t that be ME? I went from averaging 3-4k steps to maybe 500 now just enough to use the bathroom and maybe one trip to the kitchen. Baseline has significantly decreased in tolerance.
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Brooklyn
Brooklyn@BJEWB·
@_VFK_DAA @seanstidston @Lwardo4 So I experience the same but it gets worse over the hours and also experience leg burning, brain fog, trouble keeping my eyes open, feeling drugged, whole body pains, chest tightness, crushing fatigue and it can take days to get back to baseline. I still haven’t recovered
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Brooklyn
Brooklyn@BJEWB·
@alexandrite113 😩😩 fuck this illness! I’m so sorry, I hope the meds can help you.
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Amy
Amy@alexandrite113·
I show all the signs of primary progressive aphasia. My doctor is trialing me on a dementia drug. I’m 29 years old. I’m so sick of this shit
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Brooklyn
Brooklyn@BJEWB·
@ThePOTSPostman Yep and then you just get to a point where you have to take breaks from going to appts bc you’re either not well enough or burnt out. 😔
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ThePOTSPostman
ThePOTSPostman@ThePOTSPostman·
I’m tired of feeling like crap all the time. Tired of diagnosis after diagnosis with no real treatment behind any of it. Tired of waiting months for appointments just to hear “we’re not sure.” This system doesn’t fix you. It labels you, delays you, and sends you home.
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Yaron 🕊️🔥🦋
Yaron 🕊️🔥🦋@YaronFishman·
@BJEWB I’m so sorry you’re dealing with this… wishing you all the support and healing you need 🙏🩵
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Brooklyn
Brooklyn@BJEWB·
3 years ago today. 2 months into long covid. I was constantly short of breath, had chest tightness, heart palps, crushing fatigue that would come on after exertion. I had no clue what I was in for.
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Brooklyn
Brooklyn@BJEWB·
@_hxneyglow The months seriously are just blending together at this point.
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heather 💫
heather 💫@_hxneyglow·
hadn’t even realized march was almost over idk where i am most of the time
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Ami
Ami@amiautoimmunex·
@BJEWB I’m so sorry, I also get these symptoms. Sending my love 🫂
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Brooklyn
Brooklyn@BJEWB·
This is just a nightmare. Getting cold sweats and feeling so sick. Tremors. I want this to end omg.
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Brooklyn
Brooklyn@BJEWB·
Feel like I’m at my tipping point. Sully sometimes cuddles with me on my worst days though.
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Carol 🛌👩‍🦼😷
Carol 🛌👩‍🦼😷@TickedOffCodess·
Very severe ME means needing someone to feed you. To turn you. To speak in whispers. To know that even holding your hand might be too much stimulation. #MEawareness
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Brooklyn
Brooklyn@BJEWB·
I just want last years baseline back so bad. Why did winter have to fuck me so hard this year 😭
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Brooklyn
Brooklyn@BJEWB·
Wish I could just skip to a better point in my life if that even exists.
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Keşfet

@_VFK_DAA @seanstidston @Lwardo4 @alexandrite113 @ThePOTSPostman @YaronFishman @Emma40025133 @_hxneyglow