#ME/CFS functionality

[helenwhiteart-blog]

Just because you could doesn't mean you should

I think this is one of the biggest stumbling blocks of mild to moderate ME/CFS…just because you can do something doesn’t mean you should (and by the way, if you have severe ME/CFS the chances are you couldn’t even if you wanted to, which is the only reason I leave it out). Really, I suspect that this mindset of always doing as much as we are capable of is one of the commonest things to trip-up,…

[deplcythebattery]

everyone: oh you're so lucky you get to stay home all the time!

me, chronically ill: ah. yeah. haha. lucky. i get to stay home. i don't get the fun parts of that though! i can't partake in my hobbies for more than an hour every two to three days :) i do get to watch a lot of tv though! oh you think that gets boring after a few hours? haha. yeah it fucking does. imagine that being the only thing you can do and then tell me how lucky i am

[fully-embracing-my-autopsy]

I just wanna draw

Instead I'm in a flare and utterly drained

Ugh 😣

[iplaywithstring]

So right now I am almost halfway through the classroom portion of my program (there's classroom + practicum) and I am very pleased with my GPA.

This isn't to brag, so I'm not giving the number. The point is that I've been putting in the work and learning and achieving things.

When I first got sick back in 2010, the first Dr I saw basically said I was fat and lazy. I needed to apply myself more. Do more. Try harder. Push through. Then I ended up sleeping about 18 hrs a day and later diagnosed with CFS.

Over the years I've learned to manage symptoms, learned to recognize early signs of a crash, learned to actually rest, to take care of my nervous system, to set boundaries, and also when to stop. I've learned to say no to lots of things. I've learned to cut back. I've learned to respect my own limits.

And that's what is allowing me to be successful right now. Not pushing through, but making space. I can accomplish things at school because I only work 1 day a week, because my husband takes care of household tasks so I can put my energy into other things, because I've got pain management, because I limit my other activities.

Learning to respect my physical limits and symptoms was the best thing I could do. Pushing through, ignoring pain, sucking it up etc. only make life harder.

[elektroyu]

I'd love to do some art already

but

✨fatigue✨

[drummuso]

listening to the audio book of "awakenings" but oliver sacks, and i'm so taken aback by how many overlapping symptoms there are with encephalitis lethargica aka sleepy sickness and fnd, as well as pans/pandas. has anyone mentioned this before?

the fact it's likely a post viral syndrome also seems similar to pans/pandas, me/cfs, and a lot of fnd cases. obviously not all of them, and they're not perfect copies or anything, but the huge variability in them is yet another similarity.

a thing i really like about the book is how sacks treats the patients with a lot of respect. he sees the functional-like symptoms likes tics and seizures as hugely influenced by emotions and subconscious associations, but still treats them as real and disabling, and stemming from their unknown organic cause.

i'm not a doctor, i'm not an expert. i don't even have any of the conditions i've mentioned here. i'm just disabled and like to read. and i've dealt with a huge amount of medical neglect and dismissal. and i can't shake how weird it is to hear these very familiar stories and symptoms, but to hear a doctor take them seriously. to see them as part of a bigger picture. and to accept that medicine just doesn't know everything.

i'm gonna be doing a lot more reading into encephalitis lethargica and it might dismiss all the eerie similarities i see. but wow, it won't change how bittersweet it is to see a doctor, 50 years ago, admit that medicine is a work in progress. that doctors don't know everything. and that gaps in their knowledge doesn't mean they're undermined or useless, and doesn't mean they have to blame the patient for their symptoms that are unexplained.

[happyk44]

Other people being concerned about my non-speaking moments when I'm trying so hard not to worry about it because I don't even know what the cause of it is half the time is very very annoying

Yes, a week of being non-speaking sounds like a long time, but I have no choice if it chooses to last that long, in the same way I have no choice when it chooses to start or how it presents itself, so please don't say things that make me feel like shit over something that I have tried (several times!) and failed (several times!) to receive help for.

[lopstrosity]

My partner is sick with something (re test for Covid tomorrow, one negative home test so far) and I’ve been in full caregiver mode.

It’s great that my old CNA instincts & training are still easily accessible for my brain. The problem is I’m fuckin chronically ill and my body can’t keep up. They kept telling me not to push myself but when I’m in that mode I can’t feel when I’m about to die even if I rest. My lack of proprioception is a bitch.

So here I am, nearly paralyzed & starving, needing to pee, too exhausted to move or breathe without effort, all bc I want to take care of the person who takes care of me every single day. The guilt of not being enough when they need me is rough.

[bluegoblinfox]

The cat is called Tiger. She's the bestest and I love her so much. The pic actually has nothing to do with the post. She's just her cause she's cute.

A bit about me...

I'm 43 and go by she/her. I am pansexual, poly and have been known to attend BDSM events.

I am also a mother to two young peoples. One is 19 and is Autistic and has mental health issues. The other is 17 and is Autistic ADHD.

I am Autistic, late diagnosed last year. I am awaiting ADHD assessment. I'm dyslexic. I become non verbal at times when stressed or distressed.

I experienced DV which has led to CPTSD. I have had periods of depression as a result of this.

I don't have a diagnosis but I am plural system of four personalities. We all get on and they are supportive and have functions or strengths which helps us cope with life.

I had breast cancer 8 years ago and am a one boob warrior. I have cardiomyopathy and stage two liver disease from chemo and some neuropathy.

I also have FND and have a cute tic which likes to show when I'm tired. I have migraines with parasythesia. My FND impacts my mobility sometimes and other stuff.

I have chronic fatigue syndrome too.

So yeah there's all that. These things are me and I am them. We are all greater than the sum of our parts though. I don't do pity or toxic positivity. I do compassion, self compassion and kindness. I'm not broken, I'm a tapestry which is constantly being added to.

[kimberlychapman]

Which is why "sleep hygiene" is total bullshit, to the point of multiple sleep science organisations begging HCWs to stop promoting it because it's prolonging suffering.

The only people "sleep hygiene" works for are people who don't need medical intervention for sleep ailments.

And yet there it remains as a major part of the NHS' response to long covid, because when you scratch the surface of any LC/ME/CFS programme in the NHS they're all really about getting people "back to work".

Which Labour is now doing using Tory policies, and some people seem actually shocked, as if this isn't all capitalism wrapped up in a systemic way.

there’s a decent amt of neurologists who’ve called the sleep schedules we’re obligated to be on despite flagrant conflict with our natural circadian rhythms “borderline torture” and the work hours we’re expected to put in despite the fact that the average person can only maintain maximal efficiency and focus for 3 hours at a time “nearly inhumane” and i think about that a lot

[hlvrai-colorfunction]

HALF LIFE BUT THE AI IS SELF AWARE; COLOR FUNCTION!!! [MASTERPOST]

this blog might include uncomfortable topics. leave if you cannot stand that, thank you for reading this part. [— glazkove]

COLOR FUNCTION; THE WAYS THAT COLORS OF A BEING WORKS.

with color function, theres certain ways colors can identify a being. the main colors of the rainbow for example!

RED [MOST COMMON]

starting with red. it is the most common color, being the start of the rainbow. a being with red can either be hot-headed at times, though in all cases its very calm like when not irritated.

it can either be a deep bright red, or more lighter. still the same instance.

ORANGE [SECOND MOST]

orange is the second most common. this can vary, some types of orange can be...a little hot-headed. but most you see around here are the calmest of all besides blue.

yellow also goes in the orange category despite not being orange entirely.

GREEN [NOT AS COMMON]

as read, green is not as common. mediocre at best. greens like the concept of nature, and anything morally healthy in a way. they are usually found in medical jobs, this is what we use them for. or they can be found as scientists! some other colors choose to be scientists but mostly green is found.

BLUE [SECOND TO LEAST]

blue is second to least. no one likes blue. they are useless and annoying. the personality and everything about them. every shade and color, nobody likes. the personality of blue will vary from everything, but always calm.

PURPLE [LEAST COMMON]

purples are a different story. we don't see these often enough to have them written down. all we know is that some are very skiddish...

PINK [EXTREMELY RARE]

pink is extremely rare. we have caught a few and they seem very bubbly and excited. not much are on these yet.

WHITE [CLASSIFIED]

WE ARE NOT TALKING ABOUT THESE!

now... to duller colors. if you see a duller color, it might be to be assumed that they are sick in some sort of way. this is vibrancy. vibrancy is a beings cord of emotion, if they look more dull, then something must be happening, they could be very stressed.

if they are fully grey or silver, watch for them. this wont be a good sign, they need emergency help if so, unless in the deeper parts of the holding chamber. (we don't talk about black mesa.)

the colorful holding chamber waits for you!

[lakeeffectbitch]

god the more I look into it the more parallels I find between chronic fatigue syndrome and autism and it’s wild because like. Extreme heterogeneity in both cases and obviously the diagnostic criteria are a normative attempt to group together a set of behaviors and intolerances to things that the human body “should” be able to tolerate. And also. A lot of it seems to come down to “how does a person/body/brain/mind react when it has a vastly more inefficient system of cellular energy metabolism compared to the idealized Normal Person that the world is built for?” and then ofc how those various reactions get pathologized to hell and back as if it’s simply a matter of not having enough “distress tolerance” and not like “you could mimic this cellular profile by forcing a Healthy Normal Person to not sleep for several days and they’d probably react very similarly to a loud and chaotic airport”

[lesbegays]

seeing someone talk about their 1st trimester pregnancy fatigue being hard to deal with and having them basically describe my normal everyday experience has been somewhat enlightening

[whumpfish]

"Psychotic people would be terrified of or completely confused/fooled by their hallucinations" Yeah I spent years terrified of them... because I had a terrible shrink. Then I got a better one. Now, (when they do happen, because I'm fucking medicated,) I'm just annoyed.

"Psychotic people would never admit to or mention their hallucinations" Actually I've figured out that the only way to make them as not-scary to other people as they've become to me has got to be to talk about them as casually as they occur. God knows nothing else has helped.

ive found that partially treated mental illness can sometimes look to uninvolved onlookers like faked mental illness.

[compassionmattersmost]

How Yoga Nidra Can Benefit People Living with Chronic Fatigue Syndrome (ME/CFS)

Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a daily challenge that requires careful management of energy, rest, and stress. For many, finding effective ways to support the body and mind in this delicate balance can feel overwhelming. Yoga Nidra, often called “yogic sleep,” is a practice that has been gaining attention for its potential benefits in managing ME/CFS.…

[isthatovid]

one of these days i will shed the desperate need for things that bring me comfort but i am not there yet