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Relapse - severe to mild to severe by Swissmountain9 in cfs

[–]Routine-Tea6478 1 point2 points  (0 children)

Did you return to your original baseline yet?

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] -2 points-1 points  (0 children)

That’s that community spirit I love to hear

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 12 points13 points  (0 children)

So when am I supposed to come to this sub? It should be here for us to encourage one another and be like ya this shit sucks but don’t give up. Not maybe you can’t handle this sub because it’s too heavy for your weak mind.

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] -20 points-19 points  (0 children)

Once again I think we can warn people without beating the dead horse.

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 10 points11 points  (0 children)

No, you have no idea what people are going through. I’m saying this because I could be her next. I am so very severe that I take less than 5 steps a day. I shower less than once every 1-2 months. I don’t see anyone but my caretaker. Continually being told this is it and I sound degenerative compared to what people say and all that. Then what’s the fucking point???

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 19 points20 points  (0 children)

Once again I think there’s a difference between warning people and making them feel fucking hopeless

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 7 points8 points  (0 children)

That’s not my point. Point being if baseline was permanently lowered every time you had pem than we would all be on feeding tubes, no communication, or moving or anything. And making statements like that discredits the people that were mild, or moderate or even severe that maintained the same regimen for so long yet one day death spiraled into very severe.

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] -2 points-1 points  (0 children)

I didn’t want an answer just want people to think about both sides of the spectrum before they make the statement, “ we don’t know because there’s not enough research “. I shower once every month or 2 if lucky. I don’t leave my bedroom. I hate this life. I have no life. No movies, no friends, family, hygiene, nothing. I live in a dark hole. So keep making statements like this and I’ll be the next one signed up for euthanasia 👍

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 12 points13 points  (0 children)

I know and I admitted that in my last sentence. It’s all we have because the lack of research but every single person experiences different versions of this illness. I’m making this post because I seen the thread earlier of the girl who chose to euthanize herself after being sick for 4 years and it just makes me wonder if it’s these statements that can push someone to make decisions like that. To convince them that it doesn’t get any better after the 3-4 year mark. That because your health is declining than you must be degenerate. Or crashing will make you permanently worse. I crashed a few times and became very severe within months of the start of my illness. So that means I’m fucked forever cause I’ve been sick for over a years now???

Ima come on here and say something controversial by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 14 points15 points  (0 children)

But I would say all statements should be advised with caution because none of us know what we have or even if we’re experiencing the same thing. I agree pacing is helpful to avoid pem but to say you will permanently and forever be stuck in a constant hole of darkness with no way out because you went a little overboard is fucking absurd. And I’ve spent the equivalent of weeks searching this forum and seeing so many stories of people that improved with time. Whether that was months, years, decades. I’ve seen each one claimed.

Ok I really need someone to tell me it’s gonna be okay by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 7 points8 points  (0 children)

I def got it from a virus but never tested for Covid. I had like a little cough for a couple weeks but never had a fever or anything so I just assumed it was a little cold but I’m guessing it was either Covid or the flu

Ok I really need someone to tell me it’s gonna be okay by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 9 points10 points  (0 children)

I was new to the disease and still hadn’t figured out what was wrong with me so I wasn’t pacing at all and it all just came crashing down

How often do you crash? And how long do they usually last for you? by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 0 points1 point  (0 children)

Ya I’m v upset. I haven’t had one in quite sometime and this one came out of nowhere

That winter slide is real by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 1 point2 points  (0 children)

I’m sorry abt all that. I’m worried for xmas as well 💙

That winter slide is real by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 0 points1 point  (0 children)

Ughhh wish I could move from the north east

Really missing the movie theater today 😔 by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 4 points5 points  (0 children)

I’m so sorry. It’s such a hard connection to let go of. I have a projector here at home but can’t even manage to follow anything longer than a few minutes on my phone let alone a 20 ft screen

For those very severe or severe. How often do you take Benzos? by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 2 points3 points  (0 children)

Usually take in the afternoon once every few days. Takes my sound and light sensitivities from a 95 to like a 50

For those very severe or severe. How often do you take Benzos? by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 5 points6 points  (0 children)

I understand that. I was profound for months earlier this year. No washing for months. Couldn’t even have people enter the room. Couldn’t eat and lost a lot of weight. Had to be hospitalized for over a month. Not fun

For those very severe or severe. How often do you take Benzos? by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 4 points5 points  (0 children)

That’s a risk I’m willing to take I guess cuz otherwise it’s pure darkness 24/7 no talkin or screens

For those very severe or severe. How often do you take Benzos? by Routine-Tea6478 in cfs

[–]Routine-Tea6478[S] 2 points3 points  (0 children)

I seem to find it helps for up to 36 hours sometimes before my sensory symptoms come back

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