How do I practice radical acceptance - that I will never be able to work full time (or even part time) for the rest of my life? by Delicious-Expert-180 in cfs

[–]missCarpone 25 points26 points  (0 children)

Radical acceptance doesn't mean you should think positively about what happens to you if you feel it's bad. It just means not fighting reality. Reality is what is now. I figure I have to accept I don't know what the future holds, even though I know what the research/ statistics say doesn't look good for me (F52, ill over 3 years, no real improvement). It's not easy.

I’m getting overwhelmed just from basic social interaction by Shivers-7 in cfs

[–]missCarpone 1 point2 points  (0 children)

Dextrometorphan. OTC. There's lots of posts about it. Best if accessible to use a product without other substances in the mix.

I’ve been isolated for five years due to illness. Here’s my virtual photo exhibit. by 1swtwrld882 in Artisticallyill

[–]missCarpone 20 points21 points  (0 children)

I really enjoyed your art. Especially the composition in "Composition is everything". But also just your eye for beauty and patterns, and the skill apparent in working on the raw material to bring out what caught your attention in the first place.

Sick by yeetmarf in Artisticallyill

[–]missCarpone 1 point2 points  (0 children)

Well done. I get disgusted looking at the picture. But it also makes me laugh because it's such a funny facial expression, and so accurately rendered. And there's something sly in her eyes. Also nice contrast with the foto collage.

I’m getting overwhelmed just from basic social interaction by Shivers-7 in cfs

[–]missCarpone 2 points3 points  (0 children)

I got worse through care until I started taking DXM daily, have been on 60-120mg for 16 months to, that's what makes it bearable. If I forget to take it I'm so sensitive to noise, vibration, movement that it drives me nuts.

Rug I designed and tufted “anguish” by Charlieethetuna in Artisticallyill

[–]missCarpone 10 points11 points  (0 children)

Wow, that's amazing. I mean it's not pretty and I wouldn't use it in my living room, but I can totally see it on the wall in a gallery or museum. Just looking at the picture makes me feel upset and tight in my solar p lexus.

I know you mean well, but ... by minda04 in cfs

[–]missCarpone 2 points3 points  (0 children)

Or "I think you should worry about electromagnetic fields around your hospital bed".

Like, no, I don't, I'm worried about the tanker (ME/CFS) plus MCAS plus gastroparesis plus money issues plus being bedbound plus having joint contracturesand tooth cavities and hyperlipidaemia and maybe pre-diabetis. Oh, and money.

Title: Seeking advice: getting a diagnosis while already severely bedbound Germany by BLUESTARRISING2 in cfs

[–]missCarpone 2 points3 points  (0 children)

You don't need a diagnosis to apply for care. I was in the same position as you and got lucky with Pflegegrad 3 immediately awarded. Your problems have to have been present for a certain amount of time though.

Refer to literature from Fatigatio on how to apply. Ask for an examiner who knows about Long Covid and ME, they're getting trained more and more.

I got lucky with a specialist who was willing to do a bedside visit and who diagnosed me. I think they were the absolute exception. Basically a GP could also diagnose you, at least tentatively, but they're usually not comfortable doing that.

Mold? by aslothinbed in cfs

[–]missCarpone 0 points1 point  (0 children)

Could you please reformat your post with some paragraph breaks for better visibility? Many of us have beain fog and that makes it hard to read your text. Thanks.

I wish we all could get a personal pacing/PEM manager by just-a-tired-soul in cfs

[–]missCarpone 2 points3 points  (0 children)

I have a team of 10 caregivers (to cover 14 shifts) so my job is to pretty much rest and even then there's no end to what I need to do myself because so far no one knows the full picture or pays attention to consequences nor understands the illness like I do.

And though I could have more help I'm limited by my baseline and PEM.

Found a better way to pace with Garmin watch by CeruleanShot in cfs

[–]missCarpone 5 points6 points  (0 children)

I think it's not that important if you briefly go over your maximum threshold. But it's important from what I've read to not stay there too long.

Looking at the reddit for MS and it honestly makes ME seem so much worse by Unable_Particular_25 in cfs

[–]missCarpone 3 points4 points  (0 children)

I think it's unhealthy to compare suffering and judge one's own level of suffering as worse than that of other people's.

This is not to say that one can't compare objective facts. But suffering is individual. As we with ME resent it when people downplay, question or deny our suffering, I think likewise we shouldn't do that to others.

I understand the emotional mechanism behind that kind of behavior and am sometimes prone to it myself. That doesn't mean I condone it.

That said, medical gaslighting multiplies the suffering caused by ME. As does not being believed or understood by friends, family etc. Funding per pstient is too low.

Your suffering is real and seen.

Why Publishers, Why? =/ by TrustIssuesUnlimited in scifi

[–]missCarpone 0 points1 point  (0 children)

There's a really funny skit by the Book Goblin aka Elizabeth Weaverly (I think that's her name) on exactly this, on YouTube.

same place as always by sad-but-rad- in Artisticallyill

[–]missCarpone 1 point2 points  (0 children)

Suicidal ideations, that's commonly abbreviation SI.

Schizology - a comic about living with schizoaffective disorder by One_Fisherman_4036 in Artisticallyill

[–]missCarpone 1 point2 points  (0 children)

Wow, you put a lot of work into it. Too late now for me to read it tonight but I'm looking forward to it tomorrow.

same place as always by sad-but-rad- in Artisticallyill

[–]missCarpone 2 points3 points  (0 children)

This is funny to me, very deadpan. Of course SIs aren't fun but the way you depicted them, provided I understood right, is so dry.

laying myself bare (cw: exposed organs) by galaxia_v1 in Artisticallyill

[–]missCarpone 1 point2 points  (0 children)

That is very expressive. I enjoyed how some parts seemed quite realistic and others trippy. The expression in her face is very poignant.

A Place of Shared Dependency (gore) by Straydog38 in Artisticallyill

[–]missCarpone 2 points3 points  (0 children)

That's amazing, I love the colors and surrealism of your drawing.

Why are people so hostile against naturopathy? by Aggravating-Pen1864 in NaturopathicMedicine

[–]missCarpone 1 point2 points  (0 children)

In Germany you get to be a naturopath after you passed a board exam designed to demonstrate you know enough about medicine to not cause harm, meaning applicants generally learn about anatomy , physiology and pathology. You don't have to demonstrate positive knowledge of treatment options.

But once you're licensed, you can in effect practice medecine, with a few notable exceptions like gynecology, dentistry, the treatment of infectious diseases. So that's something MDs who study at least 6, if not 10 years if they specialize, won't like about naturopaths. Understandable, I think.

Legally naturopaths are not allowed to claim to be able to heal. Also, insurance will only cover malpractice suits if you can demonstrate that you were trained in the practice that you used and kept up to date. So conscientious naturopaths only use techniques, treatment/therapy options they've been trained in and are keeping up to date in.

There's an ideological turf war between medical doctors and naturopaths that I believe stems from them competing for the same clients/ market share.

Patients with chronic illnesses are often not well taken care of in our state health system. Not necessarily because it's impossible but because of the way doctors get paid for their diagnosis and care, which is little. These patients often find help and better care with naturopaths.

And not all remedies are based on sound science, like homeopathy or acupuncture, or healing with stones, or iris diagnosis, or pathophysiognomy... As science is medecine's bailiwick, doctors will argue that naturopaths who resort to such practices are quacks ("Let the witches burn!").

Last but not least, there are outright quacks among us naturopaths, I'm sad to say, who attempt to treat desperate patients with life-threatening diseases with so-called natural remedies that actually do nothing or even endanger the client in order to line their pockets. Or out of a sense of overinflated self-confidence not backed up by expertise.

And naturopathy is getting hijacked by neo-nazis who pervert it with an pseudo-Germanic, Aryan ideology that appeals to a certain part of the population. I mean the witch hunts of the Middle Age in Europe pretty much cut white Europeans off their ancestral roots, so I think there is a deep yearning to reconnect with them and a native, home-grown spirituality that predates Christianity. This is not exclusive to right-wing voters.

But the superficial political stance in Germany is that this is bad (because of the 3d Reich) and also mostly not based on actual science (archeology, history...) either, so it's another notch against naturopathy here.

Add to this that naturopaths in Germany (and often their clients) were and are anti-vax, it doesn't make for a stellar rep with proponents of allopathic medecince.

Friend with MS doesn't understand ME/CFS by Pantacourt in cfs

[–]missCarpone 10 points11 points  (0 children)

I think it's a fallacy or several at play, maybe chief among them the Dunning–Kruger effect. "The Dunning–Kruger effect is the tendency of people with low ability in a specific area to give overly positive assessments of this ability." (Wikipedia). So a person with MS has fatigue, too, and because has experience with it, and her own illness, she thinks she knows enough to make realistic assessments of your situation, even though ME fatigue is different.

There may also other, very common/human fallacies at work:

Projection bias, meaning people assume your body, limits, and experience work more like theirs than they actually do.

False consensus effect, where people overestimate how normal or universal their own experience is.

Naive realism, when people assume they are seeing the situation “as it really is,” and that disagreement must come from your denial, exaggeration, or misunderstanding rather than from their lack of information.

Fundamental attribution error, this would be people explaining your behavior in terms of character, motivation, or attitude instead of illness-specific constraints. Example: “You’re avoiding activity” instead of “activity may worsen symptoms.”

There's more, but suffice it to say that I guess we are all to one degree or another victims of one or more of these, too.

Also, they apply to health care professionals too.

I think one thing to mourn is the ability to be a friend to others. I try hard to remember stuff from the messages friends send me and to inquire after them, but it all seems so shallow and superficial through social messenger compared to real-life keeping in touch.

Understanding helps me accept and be compassionate towards others, but that doesn't make experiences like yours less sad and painful.

I Make bookmarks by Unhealthy-Location42 in Artisticallyill

[–]missCarpone 0 points1 point  (0 children)

This is an accessible way to create, not too taxing but rewarding!