Learning To Adapt

Side blog dedicated to adapting to my new normal. Chronically ill & neurodivergent. ME/CFS

[dailydivergent]

There’s no such thing as work-life balance for neurodivergent & chronically ill people.

This is because everything in my life requires work:

maintaining friendships

keeping up with my hygiene

managing bills

making money

remembering my basic needs

sleeping regularly

outputting creatively

All requires some aspect of work for me.

And when everything in your life requires work, your balance goes out the window.

If you're neurodivergent and overwhelmed — I see you.

If you're chronically ill and overwhelmed — I see you.

You're not dysfunctional.

You're not incapable.

You're doing your best.

[myalgicencephalomyelitiscfstom]

Physical and social activities are healthy for everyone. What's life like when you can't tolerate them?

Physical and social activities are healthy for everyone. What's life like when you can't tolerate them?

July 2024 article from Science Norway on post exertional malaise in ME/CFS and long Covid

Screenshot from the AMMES September 2024 newsletter

[myalgicencephalomyelitiscfstom]

Life with a Low Battery: Living with ME/CFS

From the Bateman Horne Center:

Bateman Horne Center https://batemanhornecenter.org/ understands that it can be incredibly frustrating and difficult to explain how to live in a body that functions differently than it once did. In response to feedback from the lived experience community, we created an animated video, "Life with a Low Battery: Living with ME/CFS,"  explaining energy utilization in a fun and engaging way.

This video aims to help your friends and family members understand what it is like to live with ME/CFS and to help you identify ways to close unnecessary “apps” (when possible) to conserve energy.

To accommodate the sensory sensitivities of our community, there are several versions of, "Life with a Low Battery: Living with ME/CFS," available for viewing:

Read the content: 

A version that has dialogue audio only 

A low sensory video with muted colors and no background music

One with full color, with no background music 

And finally, a version that includes full color and background music

This is one you may want to share with people in your life who don’t have sensory sensitivities because it is the most engaging version.

You can find links to these in the YouTube descriptions at batemanhornecenter.org. We hope you enjoy this new resource created by the OMF-supported Medical Education Resource Center at BHC, with support from the Whittemore Peterson Institute and our generous donors.

Help make ME/CFS common knowledge by liking and sharing with your friends and family.

Read more about the inspiration behind this video by co-creator and Bateman Horne Center's Education Director, Tahlia Ruschioni. The Story Behind "Life with a Low Battery: Living with ME/CFS."

The Story Behind “Life with a Low Battery: Living with ME/CFS”

I am thrilled to announce the release of our latest educational video, Life with a Low Battery: Living with ME/CFS. This video was created n

[myalgicencephalomyelitiscfstom]

5-page Science for ME post-exertional malaise ( PEM ) fact sheet

Headings: -Characteristics of PEM -Symptoms of PEM -Exertion and other PEM triggers -Effects of exertion that are not PEM -Living with PEM -Examples of PEM -Research on PEM

[maghrabiyya]

Question for anyone else with M.E or with a condition similar where INTENSE FATIGUE is experienced:

Do you guys ever struggle so hard to wake up in the mornings that it makes you wanna cry? I describe this to my loved ones as having to climb the tallest mountain, and in order to wake up I need to reach the very top of that mountain.

It takes me so long to wake up, I consciously want to be awake and there are moments my eyes flicker open and I'm conscious, I literally think "Okay, I'm getting there, must keep fighting to be awake" - but it takes me hours and several tries.

Sleep pulls me back in and I struggle to escape. It is horrible. I know to non chronically ill people, the idea of sleeping so much must sound nice. But it is horrible. I hate it. I hate being a slave to sleep. It's so scary. I literally feel sleep pulling me back in and I'm like no no no please let me wake up.

When my M.E was severe, I experienced this constantly, every single day. My M.E has become moderate/mild, I've experienced this less and less.. until this last week. It has been every day.. again.

[myalgicencephalomyelitiscfstom]

A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff

[lazzie-daddy]

[crazycatsiren]

"Why am I so fatigued" sometimes I forget I literally have the fatigue disease or something.

[moldyyeast]

cn: venting, me/cfs

ok so one more thing about pacing is that it's just incredibly depressing. because it forces you to constantly confront to consider how little you are able to do and how much you've lost. also at least for me it makes it really hard to distract myself and especially get out of my pit when I'm depressed, because I can't do anything and ahhhhhhhhhhhhh

[hellyeahsickaf]

When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

[marshmarlowee]

What’s the difference between fatigue and being tired?

My heart is racing and I’m breathing heavy after walking up or down a single flight of stairs.

Eating a meal is tiring.

I can sleep 10-12 hours and wake up and feel okay for about 30 minutes, maybe an hour, and then I’m exhausted again.

Mentally stimulating tasks are difficult, I can’t focus on reading.

Showering is so hard. I stand in the water and space out because it’s hard to lift my body parts to clean them properly. I need to lie down or sleep after showering because it is the most physical strain I will have in a day.

Other chronically ill and disabled people are invited to add their own examples. I’m so drained and I have to vent these feelings, it might as well be in a way that could potentially be useful for other people.

[aetherclaws-deactivated20250921]

for me at least (I have me/cfs type long covid, possibly also pots) it's also

- generalized burning/sore pain that's hard to identify, when the fatigue is really bad (especially if I haven't slept)

- severe insomnia (up to four days without sleep is pretty normal for me; I usually get four to six hours of sleep). somehow being fatigued makes it harder for me to sleep, which is pretty evil.

- cognitive symptoms: auditory hallucinations usually repeating a sound I heard recently, internal monologue repeating words or phrases involuntarily for hours making it almost impossible to think, internal monologue getting louder on certain words. other stuff I don't even know how to begin to explain. for some reason being more fatigued makes this all worse.

- brain fog. brain fog is too mild-sounding a term for what it is, though. it's being trapped in a brain that's going haywire and being aware of what's happening but not able to think about it properly because my train of thought is incoherent. it's being too tired to think, too tired to be conscious, too tired to be alive.

- worsened sensory issues because processing the sensory overload is exhausting and the fatigue makes all pain more noticeable and worse

- typing is tiring. holding my phone at the right angle is tiring. having to press any extra buttons (like capitalizing words) is extra effort mentally and physically.

- changing the tone of how I communicate in different situations is taxing. when it's bad I switch to formal grammar/vocabulary because I'm too exhausted to remember what slang or more casual grammar to use. if it's really bad I don't use grammar; anything I write like this would be incomprehensible to anyone else (this is when I'm too fatigued to get out of bed but can't sleep, so it's relegated to my notes app). I don't really talk to anyone when I'm fatigued enough for this to be an issue though, anyway, because at that point I'm way past too exhausted for social interaction (that used to be most of the time but this part of it has gotten a little better recently, but it's still pretty often)

- relatedly, conversation is exhausting. having to process the other person's responses and what I'm expected to respond with and what I want to say at once is exhausting (I'm also neurodivergent so it was a struggle before but the fatigue and brain fog this causes now is a whole other beast). when it's at the worst I can't really remember anything besides the most literal information I need to communicate, so I end up sounding rude because I can't process polite social cues. it makes it very difficult/impossible to express what I'm struggling with and why I can't communicate properly (this has also gotten a little better for me recently but is definitely still an issue)

- at it's worst, I'll be so exhausted that I know the position I'm resting (trying to rest) in is uncomfortable, but I can't really process that I should... move and do something about that, and getting into a more comfortable position is exhausting and painful (and then I just get uncomfortable again, rinse and repeat). so I'll just kind of be uncomfortable for... hours? it's hard to even tell how much time is passing

- even on my "good" days I'm more tired than I would've been after staying up two or three nights in a row pre-illness

- irregular, fast heartbeat (which is then extra sensory input and makes me more fatigued)

- I get too exhausted to think properly after about 15 minutes of intentional focus on any new information. sometimes up to half an hour on better days, and very rarely I'll have a good couple hours (like, maybe five times in the past year). so anything that requires sustained focus is really difficult. I can't read or study anything for long without it giving me physical symptoms (sometimes I get so tired I get nauseous), and worse, brain fog.

- a lot more but this is all I can think of right now

I really really wish people understood that fatigue is different to being tired because it's not even comparable. it's like comparing a stab wound to a papercut.

[spoonfulofhannah]

Healthy people really don’t understand that there is a drastic difference between them resting for relaxation and chronically ill people resting because our body depends on it

[cringecorp]

they say you can't pour from an empty cup but i've been doing it my whole life and aside from all of these mysterious ailments it's working out great for me

[transfaguette]

one major thing ive had to learn about my pain and fatigue is that overexertion does NOT result in more sleep. a healthy person might have a busy, physically active day and then have a really good sleep as a result. When I do this, I can’t fall asleep at all, and i’m often in terrible pain. So I end up being miserable twice, first when I pushed myself past my limits, and second from the resulting pain and insomnia. So here’s my message to you, chronically fatigued person: don’t push yourself when you don’t have to.

[sleepysleepysleepybaby]

chronic illness really makes the weirdest ‘would you rather’ scenarios come to life.

like, would you rather: show up to christmas with no presents for anyone or show up having not showered for a week?

would you rather: feed yourself or do the dishes?

you can choose both but your penalty is to spend an unknown amount of time bedbound afterwards.

[dissonantpapersouls]

@disabled.daisy

I've noticed that abled people (NT's included) call "innovative" and "efficient" things lazy. If I can do things an easier way in a shorter amount of time while expending less energy, it's working smarter, not harder. Are they insecure because of their antiquated attitudes and lack of ingenuity? Why waste time, money and energy? They love menial unnecessary tasks that don't matter and when there's a faster/better way they think they're better than us for unnecessarily taking longer. Do they just want to feel better about their inadequacies by degrading and belittling others?

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

How to Get On

How to have a great, disabled life.

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!