Bee

Person living with #LongCovid, #MECFS and #POTS. Here to connect with others.

[Bee @LongCovidBee]

The “big” symptoms (fatigue, PEM, POTS) are awful, we know that.

But do you know what I never anticipated? How horrendous tinnitus can be. It’s like I have someone screaming inside my head 24/7.

[Bee @LongCovidBee]

Every time I experience a crash, I wonder how they can’t know what’s going on inside my body when this happens.

There must be an explanation for something so debilitating. How have they not figured it out yet? #MECFS

[♿✊🏼 @SickGirlProbsss]

Let me get this straight, I need *quality* sleep to not flare up the #Dysautonomia monster, and yet - I can't sleep due to the.... ?
If you guessed Dysautonomia monster, you're correct! 😆😭🤔

Dysautonomia/#POTS night time #adrenaline dumps are right on schedule 🧟‍♀️.

[Bee @LongCovidBee]

This. I often wonder if the CFS label is why we’re so misunderstood by people without the condition. Fatigue is synonymous with tired and everyone is tired.

I am fatigued, all the time. But the PEM is what causes the most disruption to my life.

[Taylor of Samsara - Delusional Optimismmaxxing @taylorpartdeux]

The more times I experience PEM, the angrier I get about the “CFS” label.

I can only speak for myself, but I never really feel “fatigued” after exertion. I just feel like straight shit.

[Bee @LongCovidBee]

I’m mid-crash, exhausted beyond belief, can barely move - yet can’t fall asleep. Make it make sense. #LongCovid #MECFS #Insomnia #ChronicPain

[Bee @LongCovidBee]

@LongCovidDuchy Hey, I’m wide awake (the joys of mid-crash insomnia) if you need to talk to someone..

[Bee @LongCovidBee]

@exceedhergrasp1 I would be interested to read this as I don’t seem to tolerate my SSRIs anymore.

[Morgan Stephens @morganstephensa]

Most Long Covid patients deal with illness so severe they should be admitted to a hospital, yet stay home bc:

1. There’s still no treatment to help them
2. They can’t afford more medical debt esp when there’s no financial help
3. They’ll be deprioritized in a hospital setting.

[Bee @LongCovidBee]

@SickGirlProbsss Healthy people are wild. Like if I didn’t have “all these conditions” I would totally be out living my life and not being an arse to people on social media.

[Bee @LongCovidBee]

I’ve been reflecting on why I don’t like to disclose my illness/disability to people.

Is it self-stigma and internalised ableism, or a fear of stigma from others? Probably both? Meh.

[Bee @LongCovidBee]

@RhodaWatkins10 For me, there seems to be overlap. But last year I experienced PEM without POTS. Now, PEM tends to coincide with a POTS flare, but can get POTS flare without PEM (e.g. triggered by heat, standing for a long time).

[Bee @LongCovidBee]

@Chronically2784 @RosalieKnecht @katharinewrites Oh this is a great idea! I’ve really enjoyed graphic novels in the past and think this could work really well.

[Bee @LongCovidBee]

In the days before #LongCovid, I used to love reading - mostly fantasy or thrillers.

But often now my brain struggles with this.

I think it would bring a lot of joy into my life to be able to read more. Can anyone recommend some awesome easy reads?

#pwME #POTS

[Bee @LongCovidBee]

@Co1Donna @Alimae05150 Oh no, sorry to hear both that you’re suffering and that your doc is unsupportive.

When I shower, my heart rate increases rapidly and I’m prone to fainting. And takes days to recover from even without a fainting episode.

[Bee @LongCovidBee]

@aboucher85 It’s so terrifying when that happens. Does anything in particular seem to trigger it?

[Bee @LongCovidBee]

@ctrssierra @fulltimesickgal @AlexGaggio @useless_priest It’s actually a pretty good analogy because 80% of all injuries in car accidents are caused by seatbelts—whiplash. 2 million Americans per year.

Most cases are mild, but in some instances can cause disability and death.

[Bee @LongCovidBee]

@useless_priest I don’t know. I think transparent reporting is essential to support decision making.

But personally, if I were still healthy, I would take any risk reduction (even if only modest).

[Bee @LongCovidBee]

I do like spoon theory, the main problem for me is that it takes 4 spoons to explain it and I need those spoons for getting up and down the stairs to the loo.

[Orkney Fibromyalgia Sufferer ♿ @OSufferer]

“The Spoon Theory” whilst I agree it may apply to some people. I also feel that it is misleading and damaging to those who have no spoons to begin with and are always running with minus spoons 🥄

What do you think 🤔?

#thespoontheory #doesntworkforme #ihavenospoons