adjusting to life with me/cfs

[chronicallyinvisible]

you know what I hate about having a permanent illness, both physical and mental, is the balancing act between looking after yourself and accepting the realities of living with illness. like, you know you should do the ‘right’ things like eating well and having a good sleeping pattern and whatever, but you also know that no matter what you do or how hard you try you’ll probably never be able to cure yourself. it just feels really cruel, like the constant guilt of ‘this is all my fault’ vs. the despondency of ‘what the fuck is the point’

[chronicallyinvisible]

i know being extremely ill is a tremendous burden and i would never truly want to be sicker than i currently am, but fuck i hate being stuck in the grey area of chronic illness. that area of being able to shower yourself most days, of being able to cook sometimes, of being able to walk up a flight of stairs, of being able to drive a car, but also of not being able to work or study, of not being able to stand for longer than 5 minutes, of not being able to walk long distances or play sports or, let’s be honest, have sex. i don’t know where i am or where that leaves me, and what makes it harder is that the line between what a chronically ill person can do and should do is very, very blurry. it’s so, so hard living your life in a constant state of limbo

[crpl-pnk]

it is ok to mourn the life your disability didn’t allow you to have. it is ok grieve for the experiences you will never get. it doesn’t make you a bad anti-ableist. i promise

[crpl-pnk]

feeling this post from the earliest days of cripple punk in my soul right now

[twelvesclockworksquirrel]

I think “Congratulations on finally getting your diagnosis” cakes need to be a thing.

[twelvesclockworksquirrel]

I bet you all thought I was joking…

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I never joke about cake.

[chronicfatiguetarot-deactivated]

It may not be positive or feel-goody to hear, but I am my illness. It is a large part of me; an omnipresent factor in my life and a backdrop to every hour of my day. It’s not just some ‘tiredness’ here and there, it’s fatigue that stands behind me 90% of the time whether I want it to or not. Yes, this is even if I get a full night’s sleep. It never goes away.

[painmanagementprincess-blog]

It doesn’t matter how hard you try, you will always become your illness.  Others will measure you by your illness, doctors won’t listen to you because of your illness, and no matter how hard you try your illness will always take over until you forget who you are without your illness.  The best you can hope for is to map out a new life, a new you, a partnership with your illness.

[styna]

Things my body can’t tolerate:

- Heat - Cold - Humidity - Rain - Extreme Dryness - Over exertion - Mild exercise - No exercise - Standing up - Sitting down - Lying flat - Lying on my side - Lying on my back - Lying on my stomach - Sleep - No sleep

[bat--princess]

Having a chronic illness is knowing the very real differential exertion of energy between sitting and laying down.

[crpl-pnk]

person with disabilities? no. person with diss abilities. i have a gift for clever but biting comments & also my knees don’t work

[chronicallyinvisible]

able-bodied people don’t seem to realise the nuances of disability, they look at it as such a black and white issue when it’s really not. like, i don’t need a wheelchair in the sense that i can’t physically use my legs and i don’t need a walking stick in the sense that i would fall over without one. but i do need a wheelchair in the sense that it could make the difference between my being bed-bound for a day and being bed-bound for a week and i do need a walking stick in the sense that using one today might enable me to do more tomorrow. disability and chronic illness aren’t black and white; using things out of necessity can mean a lot of different things for a lot of different people.

[oatbee]

existing is exhausting 

[avpd-chekov]

that feel when u have one (1) good day and u’re like “im cured? did i make it up??” and the next day is like “ah nvm”

[rohie-deactivated20191102]

there are too many versions of me in the universe! the girl i bumped into but didn’t stop to say sorry to has a version of me in her mind. the guy i let borrow my homework has another version of me in his. even my friends, my family, and everyone i’ve ever met in my life has their own version of me in their minds that i’m not even aware of

[cementforbones-deactivated20171]

trying to make peace with a body that has no intention of making peace with me.

[etrogim-deactivated20200109]

no offense but it doesn’t feel cool or fun or edgy to be lonely and bitter all the time and i’m really looking forward to loving and being loved

[autisticarchive-deactivated2019]

Don’t forget to include disabled people in your activism.

When you talk about the wage gap between men and women and people of different races, remember that disabled people in the US can legally be paid as little as 22 cents an hour as opposed to the 7.25 dollars an hour that non-disabled people can expect to be paid.

When you talk about sexual assault, remember that at least 83% of women with disabilities will be sexually assaulted in their life time as opposed to 25% of women without disabilities.

When you talk about police brutality, remember that up to 50% of the people who are being killed by the police in the US are disabled.

When you talk about how cut downs on welfare affect people, remember that just in the UK, 2,380 disabled people died between 2011 and 2014 shortly after being declared able to work.

When you talk about abuse, remember that the abuse rates for disabled people are higher than the abuse rates for the non-disabled population and that disabled people are especially vulnerable to abuse from parents, caregivers, relatives and partners throughout their life time because we often can’t live independently.

When you talk about reproductive rights issues and a women’s right not to have children, remember that disabled women still have to fight to be seen as capable parents and remember how at least a million disabled women were forcibly sterilized during the last century and that these sterilizations are still happening today.

When you talk about the horrors of conversion therapy, remember how ABA (Applied Behavior Analysis, the most widespread “therapy” for autistic children) was invented by the same person who invented conversion therapy after the same principles, and that the two “therapies” are thought to cause PTSD at similar rates.

When you talk about unemployment, remember that only 35% of working-age disabled people are employed, compared to an employment rate of 78% in the rest of the population.

When you talk about homelessness, remember that at least 40% of the homeless people in the US are disabled.

When you talk about education, remember that only 31% of disabled people go to college as opposed to 66% of the general population.

When you talk about poverty, remember that while the non-disabled population in the US have a poverty rate of 12%, disabled people in the US have a poverty rate of 29%

Don’t forget to include disabled people in your activism.

[annieelainey]

Standing Up From My Wheelchair in Public

I often bring up the ableist action of harassing/accusing ambulatory wheelchair users (as well as scooter, walker, crutches, and cane users) of “faking” because it’s something that happens ALL the time under the guise of “allyship” that people seem to WANT to remain oblivious to.

A person standing up from a wheelchair or standing without their mobility aid SHOULD NOT be cause for alarm, should not inspire accusations of faking, should not inspire you to say, “it’s a miracle!” in a mocking tone, or to ask me if I should “really be parked here”, or recommendations of weight loss so I won’t “need that chair anymore”, or whispering about how my karma is coming or how I’m going to hell for “playing with a wheelchair”; all comments I’ve received from strangers for just standing in public, getting my chair out of the trunk of my car on my own, or doing something as minimal as riding my chair while being young and smiling.

It’s prejudice; it lacks understanding to how diverse disability is, it uses a singular representation of wheelchair users to judge all wheelchair users. When people are called out on that ableism, those who do it will become defensive and claim to be acting in defense of disabled people because they truly deeply believe in the myth of a “faking disability epidemic", but hear this: non-apparent disabilities/invisible disablities, etc. are REAL disabilities and you are harassing the very people you are claiming to be advocating for.

For me, it is physically very difficult, painful, and risky to walk in the first place, the moments when I am able to, it takes alot of energy and concentration. Emotionally, it takes courage for me to get up from my chair in public; doing so causes anxiety that is parallel to what I would feel as a woman walking alone in the street at night. It’s a situation where I have come to EXPECT harassment and that is not okay. This is not how it should be, getting out of my chair in public should not have to feel like a radical act.

A person who gets up from their wheelchair might have limited ability to walk because they are rehabilitating, have dysautonomia, lung issues, heart issues, chronic pain, hypermobility, fragility of joints or muscles, fatigue, there are so many reasons for being an ambulatory wheelchair user and they come in all ages, sizes, colors, there is no one way, no one look.

[sunflower-cane]

Ask before you touch someone's wheelchair, and if they say no, the answer is no.

[gelana78]

Say it again. Louder for those in the back.

All y'all trying to be helpful, ask if your help is needed. And don’t treat the person as though they are helpless.

“You look like you have things under control, but would you like a push up this hill?”

And if they say no, be respectful and gracious.

“Right on! Have a good one!”