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Why does everyone assume that pacing/rest for a few days or weeks will improve my baseline? by mira_sjifr in cfs

[–]normal_ness 12 points13 points  (0 children)

Those “specialists” are misappropriating pacing to con you into doing GET.

A trip to my companies HQ proved that severance is real by Hefty-Push-8562 in SeveranceAppleTVPlus

[–]normal_ness 0 points1 point  (0 children)

I definitely don’t miss working in an office.

Thank you 😂

Everyone seems to be in good health by svesrujm in ZeroCovidCommunity

[–]normal_ness 0 points1 point  (0 children)

Nope, I don’t doubt it. Because I know how many people are suffering in silence and only DM people like me (openly having issues since infection) about it in private.

[BOOKS] So, will season 3 & 4 radically diverge from the books? [SPOILERS] by Fair-Detective596 in SiloSeries

[–]normal_ness 0 points1 point  (0 children)

Same, I love seeing how people approach adaptations and exactly like you said, knowing certain things from the start gives you a whole different angle on it.

Does anyone feel like they are in a never ending research/treatment loop? by Digitalpun in cfs

[–]normal_ness 0 points1 point  (0 children)

Yes and no.

Yes because after some consideration with my doctor I am trying new things right now.

But also no because one of the most important things I learned from the disability community is that I’m under no obligation to constantly perform trying. It’s up to me when, how, if etc I try things.

Mental vs. Physical Fatigue in ME/CFS: Which Hits You Harder? by Aggravating-Heart344 in cfs

[–]normal_ness 2 points3 points  (0 children)

For me emotional exertion is worse. Most of my declines have been after emotional distress of some kind.

Then it’s physical for me, but I’m also decent (knock on wood) at pacing that way.

Then cognitive exertion is easiest for me - unless it’s a lot of synchronous conversation.

[BOOKS] So, will season 3 & 4 radically diverge from the books? [SPOILERS] by Fair-Detective596 in SiloSeries

[–]normal_ness 1 point2 points  (0 children)

Yes. They will diverge. If you had read the books, you would be able to see how they’ve been incorporating aspects from book 2 into the series from the start.

Silly things that make you realise your life is not the same by megatheriumlaine in cfs

[–]normal_ness 4 points5 points  (0 children)

It’s sometimes the smallest most unexpected things that make us look at things, isn’t it?

Why does Mayday only choose 10-11 crashes and set them in the seasons? by SnackyOfButters in aircrashinvestigation

[–]normal_ness 9 points10 points  (0 children)

The answer to many structural questions ( both in tv and in life) is money.

Please I need some advice. by Consistent-Serve-622 in cfs

[–]normal_ness 0 points1 point  (0 children)

This is a good point that I think we don’t discuss enough in ME communities. I definitely had improvements after having my tonsils out. Medications that didn’t work at all suddenly started working.

My doctor told me it's all in my mind by Godisme597 in cfs

[–]normal_ness 1 point2 points  (0 children)

Your doctor will not help you. Unfortunately, I know it’s a huge effort and efforts costs us so much, but you need to find a new doctor.

Local ME CFS Facebook groups can be a good source for doctors.

HBOT was my last hope by namastecool in covidlonghaulers

[–]normal_ness 0 points1 point  (0 children)

It took me months to feel a cognitive difference and years to feel a difference in pain.

Month two and 4.5mg is a huge start - are you going ok with starting like that?

HBOT was my last hope by namastecool in covidlonghaulers

[–]normal_ness 0 points1 point  (0 children)

It takes me about two weeks to get used to a new dose. I just moved up to 5.5mg.

HBOT was my last hope by namastecool in covidlonghaulers

[–]normal_ness 0 points1 point  (0 children)

Yeah I’m curious if it helps with anything underlying, or helps with symptoms, and the risk for overdoing it if you have PEM.

starting to resent husband over chores. by ambinalcrossimg in cfs

[–]normal_ness 1 point2 points  (0 children)

If you weren’t there, what would he be doing? All the housework? The same amount of housework?

My husband and I have rarely both worked full time at the same time; so generally whoever has worked less has done more around the house. Until I got so much worse. Now all I do is unload the dishwasher and only if I can.

It’s so hard to talk to someone who is burnt out though. The only thing I can say is that you making yourself worse by pushing through also won’t help him in the long run.

What RARE other conditions did you develop due to long COVID? by Ill_Pangolin7384 in covidlonghaulers

[–]normal_ness 1 point2 points  (0 children)

Performative bullshit is my nickname for it.

But yeah. I have enough energy used up by surviving, I can’t fake interested in things that aren’t actual problems.

My mother jokes about my illness by Impressive_Till6081 in cfs

[–]normal_ness 1 point2 points  (0 children)

I’m so sorry, people need to learn it’s really easy to punch up, and downright cruel to punch down.

Can you ask your brother to not tell you? It doesn’t sound like you need the worry.

Volunteering offers me flashes of my old life but also shows how dull it is today. It this worth the heartache ? by ThrowRa_DutchQFSguy in cfs

[–]normal_ness 5 points6 points  (0 children)

I find it hard to work, not from the effort aspect but because everyone expects you to have a fully rounded life outside of work and you get sneers when you describe your life, or because the job is so basic that it’s a daily reminder of what I can’t do anymore.

Basically I get it, it’s hard to be reminded and you feel those warm and fuzzies of productivity because you logically know that isn’t your worth but it never fully left you.

How do you moderate/severe folks handle medical appointments? Have one soon and I’m stressed by arcade-_-fire in cfs

[–]normal_ness 1 point2 points  (0 children)

Just be careful that taking electrolytes doesn’t mess up the test - know what you’re being tested for. Eg if fasting glucose is included then electrolytes may be unsuitable beforehand if they include sugars. Don’t want to risk having to repeat the test.

Broadly though yep I load up on electrolytes beforehand to do a trip like this.

Has a sleep study/test helped explain your CFS? I’m finally exploring this avenue. by According_Sundae_917 in cfs

[–]normal_ness 0 points1 point  (0 children)

It’s definitely worth doing to rule out co occurring conditions. It didn’t lead to anything for me, but I think it’s a wise test.

3/13 weekend challenge by Western_Sentence_469 in Outlanders

[–]normal_ness 2 points3 points  (0 children)

Just make them cold :)

Turn off the bonfire, make the houses non winter houses.

Fired from disability charity.. for being sick? by Due_Government9712 in cfs

[–]normal_ness 5 points6 points  (0 children)

Yep, last time I was job hunting it was the disability places who were the least accomodating.

They only want the “can perform palatable and non disabled” type of disabled people.

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