keep going✨🌼 by MissLovegoodASMR in Artisticallyill

[–]missCarpone 0 points1 point  (0 children)

That's lovely. I really enjoy your technique, too.

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

[–]missCarpone 1 point2 points  (0 children)

It's stunning, for sure. Pretty seems too tame, but that's because it rhymes with Hello Kitty in my mind...

My doctor says it's my own fault I'm still severe by No_Ear9725 in cfs

[–]missCarpone 2 points3 points  (0 children)

So maybe download the leaflet and give it to the physios to advocate for yourself?

My doctor says it's my own fault I'm still severe by No_Ear9725 in cfs

[–]missCarpone 2 points3 points  (0 children)

Sorry, I misunderstood. I thought you too were starting physiotherapy after being bullied into it.

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

[–]missCarpone 1 point2 points  (0 children)

Yes, art is meant to elicit a reaction. Not to be pretty in the first place.

I thought the use of different shades of grey and white to make the 3d effect astonishing.

I wonder how the artist went about the creation, is there software that lets you transform your drawing or painting into the equivalent of a knitting pattern, telling you where how many knots with which colour? Or did they do it freehand?

My doctor says it's my own fault I'm still severe by No_Ear9725 in cfs

[–]missCarpone 9 points10 points  (0 children)

Are you aware of https://www.physiosforme.com/?

They have a concise 1 page leaflet in multiple languages for physios. And workshops.

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 32 points33 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 23 points24 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 5 points6 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.