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narcissisticpdcultureis · 1 day

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NPD + Chronic fatigue culture is being too tired to draw most of the time, but when I do, I always draw self portraits. What else would be worth my energy?

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#npd culture is #npd + chronic fatigue culture is #npd #actually narcissistic #actually npd #narcissistic personality disorder #cluster b #chronic fatigue #chronic fatigue syndrome #cfs #cfs/me

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hellyeahsickaf · 4 months

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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)

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!

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anxious-and-in-pain · 1 year

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it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

#chronically ill #chronic illness #chronic pain #fibromyalgia #spoonie #fibro #ibd #central sensitization #disabled #myposts #chronic fatigue #cat #disability #chronic fatigue syndrome #actually chronically ill #cfs #cfs/me #food mention

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violet-phoenix-nebula · 1 month

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When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

#disability #disabilities #invisible disability #chronic disability #disabled #physically disabled #chronic fatigue syndrome #chronic illness #chronic pain #chronic fatigue #chronically ill #cfs #cfs/me #mecfs #myalgic encephalomyelitis

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chronicallycouchbound · 8 months

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I’m allowed to be lazy. Disabled or not. Laziness isn’t an inherently bad thing y’all just too caught up in hyper capitalist hustle culture to care. I don’t owe you productivity. I’m allowed to rest.

My rest is radical.

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crippledpunks · 2 months

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chronic fatigue is such a bitch because it's not super obvious at first. it creeps up on you some days, but other days, that's just the entire day. you start your day exhausted as hell, and like yeah, you're aware that you're tired, but you blame yourself for feeling this way. it's always your fault somehow. then comes the end of the day and you realize that it was your chronic fatigue, and you blame yourself for beating yourself up all day long. you can't win

#actually disabled #disability culture #chronic fatigue #cfs/me #cfsme #chronic fatigue syndrome #fibromyalgia #arthritis #psoriatic arthritis #heds #hypermobile eds #chronic pain #cripple punk #crip punk #cripplepunk #disability rights #disability advocacy #our writing

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the-archenlandian-court · 6 months

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Things I wish I knew before I got diagnosed with a chronic illness

You’ll forget - Sometimes you’ll straight up forget you have a condition, that you have a disability, and that others don’t feel like you

Your most important job is to stay alive - Everything else is secondary, as long as you stay alive you have achieved something

It’s okay to cry - It’s normal, chronic illness is sucky, but don’t cry for too long or focus too hard on everything that’s wrong because it will make things worse

Your body is in a war, be kind - Your body is constantly fighting against itself, give it time to rest and heal, eat food and drink, do what you can to aid in the battle

If you feel like you can’t do it, you can - Have a cry, eat some ice cream and have a nap, when you wake up you’ll find the strength to keep going

Some advice from younger me; January of 2021 (I just found it stashed away)

#advice #chronic illness #things i wish i knew #disabled #disability #chronic pain #fibromyalgia #chronic nausea #chronic fatigue #cfs/me #hypermobile eds #pots

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stardust-maple · 9 months

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I made my own pain and fatigue scale charts. Because I'm so adept at overcoming my symptoms the normal pain scale doesn't really work for me. I adjusted my numbers so that I could change the number into something I could tell a doctor when they inevitably ask me to rate my pain.

[Image Description: Pain Scale Chart with rainbow gradient background for each row, starting at red and ending at blue. Row 1: Mine Drs Pain Scale Description Row 2: 10 X I am not leaving my bedroom or bathroom, someone needs to bring me food and I need something to dull the pain or the pain will cause tears. Row 3: 9 X I am not leaving my bedroom and bathroom for anything other than food. Row 4: 8 10 Speaking is difficult. It is no longer practical to do activities outside of the bathroom or bedroom, but they can be done with assistance. Row 5: 7 9 Necessary care activities are sacrificed. Academic activities and social activities can no longer be tolerated. Row 6: 6 8 My pain is tiring. Paying attention is difficult. All activities require pacing and extra effort. Row 7: 5 7 My pain is so distracting it is making me tired. It is hard to think. Necessary care activities are no longer all doable. Row 8: 4 6 My pain is so distracting it is making me tired. It is harder to think. Necessary care activities are starting to be limited. Row 9: 3 5 I can continue to do most activities Row 10: 2 4 My pain bothers me but I can ignore it most of the time Row 11: 1 3 My pain bothers me, but I can ignore it most of the time. Row 12: 0 2 I am aware of my pain only when I pay attention to it Row 13: X 1 My pain is hardly noticeable Row 14: X 0 I have no pain. END Image Description]

[Image Description:

Fatigue Scale Chart with rainbow gradient background for each row, starting at red and ending at blue. Row 1: Mine Drs Fatigue Scale Description Row 2: 10 X Can barely sit up, needs assistance to get out of bed. Holding conversations is impossible. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous. Row 3: 9 X Able to walk and stand for short distances. Holding conversations is difficult. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous. Row 4: 8 10 Able to walk and stand for short distances. Holding conversations is difficult. Sitting for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous. Preparing a meal isn’t possible. Row 5: 7 9 Holding conversations is difficult. Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous. Row 6: 6 8 Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is difficult. Preparing a meal is difficult. Row 7: 5 7 Standing or walking for long periods is difficult. It is difficult to eat. Focusing is difficult. Row 8: 4 6 Standing or walking for long periods is difficult. Focusing is difficult. Row 9: 3 5 Cooking for longer than 15 minutes is extremely challenging. Row 10: 2 4 Not everything can be done in the day. Activities are slowed down. Difficult mental challenges are sacrificed. Row 11: 1 3 Tiredness makes it difficult to enjoy fun activities. Row 12: 0 2 Things take more effort than usual, but everything is still doable. Row 13: X 1 Slightly tired but still able to carry on as normal Row 14: X 0 Not tired at all END Image Description.]

Feel free to use them yourself if you like them!

#chronic illness #chronic pain #chronic condition #disability #chronic fatigue #cfs/me #chronically ill #spoonie #amps #disabled #actually chronically ill #actually disabled #stardust maple #pain scale #fatigue scale #chronic fatigue scale #chronic pain scale #long post

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themathomhouse · 10 months

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this disability pride month, stop making jokes about people in wheelchairs standing up or walking.

can I stand and walk? sure, for a short while and with pain. the consequences for trying to be out all day without a wheelchair are that I'll be in bed for the rest of the week, too tired and in too much pain to move.

but the government won't give me my own wheelchair because they have the same attitude as these jokes - I can stand up, so I don't need one. exercise is good for you, you should walk!

it keeps me trapped in the house, unable to do anything more than short stints anywhere without borrowing or hiring a wheelchair - one that causes me pain to sit in and relies on someone to push me (usually with difficulty), because they're not going to have a high-end chair for that sort of thing.

it's not a miracle that a wheelchair user can stand or walk. it's something we should aspire to see more often.

#disability #disability pride month #chronic fatigue #fibromyalgia #cfs/me #post exertional malaise #like fucking hell people we should really be long past this by now #why am I seeing these bullshit jokes on my dash in twenty fucking twenty three #i did a short walk to a cafe yesterday because I thought I was up to it #and my right leg has seized up #my ankle can barely take my weight and my hip won't move properly #also lol I almost certainly have hEDS but cannot persuade a doctor to give me a referral #in summary #stop being fucking dense #i would rather people who don't need mobility aids use them than have people struggle because they don't want to be seen as a faker #or have people think that you have to reach a certain level of severity before you need it #also if I had a wheelchair I would bring my cat with me more places but that's by the by

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calmmyfears · 4 months

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I wished abled people would understand better that when I'm "giving up" on something it actually means I can't give energy to this because other stuff needs my energy more and I only have a very limited amount of energy that depends from day to day. I can't control it either no matter how hard I try. I feel like I have been explaining this my whole life now and it still doesn't matter, no one listens.

#spoonie #chronic fatigue #fibromyalgia #cfs/me #cfs #chronic illness #invisible disability

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lolliepopcrusader · 2 years

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Calling all chronic creatives - here's how to up your crochet game!

I'm an avid crocheter, but holding the hook for long periods of time became exhausting and painful. Being chronically ill, losing the ability to enjoy my hobbies was tough for me accept.

My husband took me to the craft store and we purchased a ergonomic crochet handle. This handle needed to fit my criteria;

able to hold a variety of hook sizes

hold up to high tension crochet projects (I do a lot of amigurumi crochet, which you need to complete with tight tension)

reduce my wrist/hand pain

reduce the amount of grip strength needed to hold the hook to avoid fatigue

This ergonomic crochet handle *seemed* to tick all these boxes. It was quite an expensive purchase and to be honest, I was disappointed in it in all aspects.

The purchased handle uses small rubber stoppers to hold the crochet hook in place, but as you are crocheting the hook works loose and spins around inside it. The handle itself was too small, making it painful to hold. I had to use a lot of grip strength to keep it in my hand, which is what I was trying to avoid by purchasing the darn thing. The little knobbly bit at the end really dug into my hand and hurt. It was so annoying to use and I gave up on it altogether after three days of using it (not to mention one of the rubber pieces broke apart within hours).

I expressed my disappointment to my husband, and he decided to come to my rescue! Over the course of a week, he designed me his own ergonomic crochet handle in a computer program called CAD. He then printed it out using his 3D printer. I can't even begin to tell you how much I love this new handle - its a game changer!

During the design process, he took into consideration all of my complaints about the disappointing handle and my criteria that I had listed. The handle he designed is bigger, so it uses less grip strength to hold it in place which also reduces my pain.

Instead of using rubber stoppers like the other handle, he designed a 'lock and key' system for keeping the crochet hooks in place and it works fabulously! The hook never moves and I'm really rough with my crochet hooks. It holds up to my high tension crochet projects and I have completed many amigurumi with it, even small, intricate items. Since it is designed with the lock and key system, my husband was easily able to print different keys to be able to hold multiple sizes. I've got keys ranging from 1.25mm all the way up to 6mm!

I can now crochet for hours on end and I swear my crochet skills have gotten so much better.

After expressing my delight at the crochet handle my husband designed for me, both him and I want others to be able to experience the freedom that I now have when crocheting. With chronic illnesses, its important for you to be able to continue with your passions as much as possible, so we have decided to make this crochet handle a sellable physical item for others to enjoy.

Here's the link to purchase one if you would like to give it a go!

Each crochet handle will come with the hook sizes;

1.25mm

2mm

3mm

4mm

4.25mm

5mm

6mm

If you want other hook sizes, send us a message and we can design one.

The cost of the handle and keys covers the cost of the 3D printing material, we are not making a profit off of this because we want as many people suffering from chronic illness to be able to enjoy crocheting again. We are happy to post internationally as we are based in New Zealand, send us a message before purchasing so that I can get you the cost of shipping.

I hope you will love this crochet handle and hook set as much as I have!

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seppukart · 2 months

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Me: I don't like when evil characters in movies redeem themselves by losing an arm, becoming paralithic or disabled in general. Disabilities are not a punishment: anyone, good, bad or anything in between can have them. They are just like any other trait. Stop treating them any different

Also me, explaining my disability: I'm Cursed

#ptsd #disabled #chronic illness #cripple punk #disability #chronic pain #ibs #physically disabled #dissociation #fibromyalgia #cfs/me #chronic fatigue syndrome #chronic fatigue #chronically ill #my posts

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hellyeahsickaf · 2 months

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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 💕

#chronic illness #chronic pain #disability #actually disabled #chronic fаtiguе ѕуndrоmе #spoonie #cfs #fibromyalgia #cfs/me #me/cfs #cpunk #cripplepunk #pots #long covid #yes this is about something that happened lmfao #feel free to add more #bc I am sick of this!#this is about physical disability. please don't derail it

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radiotrophicfungi · 2 months

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BLINKIE SET #53 . . . CHRONIC FATIGUE RECOLORS

#flashing lights #eye strain #chronic fatigue #chronic illness #cfs/me #blinkies #blinkie #old internet #old web #page decor #page decoration #disability

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gracemacncheese · 9 months

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I used a walking stick for the first time today and I felt so so nervous but on my commute into work a lady told me she loved my stick and is getting one of her own soon. I told her the name of the site I got it from and we had a shouty conversation about it while I was going up the stairs and it just felt like I was talking about a cute pair of shoes or a dress! Yes it’s a mobility aid but it’s also something I but a lot of thought into picking out like I would anything else that I wear/carry!

Then an old woman using her own stick smiled and nodded at me on the way home! I felt like Barbie sitting on that damn bench!! I had been so scared of feeling “like an old lady”. tbh I had probably actually been scared of looking like a disabled person despite experiencing the physical pain and exhaustion of disability for the past year. Somehow hiding all that discomfort behind the exterior of a completely healthy person gave me hope that I could still fit in with all the normal able bodied people.

I knew I was going to look vulnerable and everyone would be able to see that I’m different and I constantly had this image of an old woman with a cane in my head and I was so afraid of looking like her. And then I saw her! And she smiled at me! And we both did a little laugh as we walked past each other because hey, look at us, so different in age and appearance and yet we have this one object in common, this thing that is allowing us to experience the world like we could before. Hers was flowery and mine was sparkly. I hope I see her again sometime.

#disabled #cripple punk #cripplepunk #walking stick #mobility aid #cfs/me #me/cfs

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valeria-sage · 1 year

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Guys. I’m in love. These are some small, quick exercises for people who are bed-bound. It’s linked, but for anyone who doesn’t want to read it:

Hands, Shoulders, and Arms

Shrugging Shoulders

This exercise works best when it is done while sitting down. Shrug shoulders in a way that the shoulders reach the back of your head. It is best to repeat it 5 to 10 times a day.

Palm Stretching

To do this, open your palm and extend your fingers for a few seconds. Try to extend as much as you can until you feel a stretch. Now, touch your thumb with each finger individually. Repeat the same for both hands.

Arm Raises

A very simple exercise is to raise your left arm as high as you can above the head. After repeating it five times, repeat this five times with your right arm.

Now, raise your left arm again in front of you and then change your arm five times. These are called forward arm raises.

Now, for one of the best bed exercises for arms, raise your arm straight out to the side, this is called lateral arm raise. Do it one by one for each arm. If you have the strength, then do this for both arms at the same time.

Arm Crosses

For this, move your arms to the sides until you feel a minor stretch. Now, bring the arms closer to each other in a way that they pass each other in a cross.

Neck

Head Rotation

You can do this while sitting. You need to tilt your head to one side and then rotate it 360 degrees gradually. Repeat the exercise from one side and then repeat it in the reverse direction.

Head Turns

For this, you need to turn your head slowly from one extreme to another. Stretch your head in a way that you feel extreme tension on the side of the neck. Repeat this five times a day and increase the number of repetitions every few days.

Leg, Ankles, and Feet

Leg Rotation

To perform this, keep one of your legs still. Move the other leg to the outer side, a little away from the first leg. Bring it back again and repeat it for the same leg several times. Now, do the same for the other leg.

Ankle Rotation

For this one, extend your legs while sitting down or lying down. Now, raise your leg slightly above the surface. Rotate your ankles clockwise and anticlockwise. Do this at least five times each.

Toe Bends

While lying down, flex your toes when you point them. Stretch the toes outwards and then inwards, towards yourself.

Ankle Bends

Bend your toes in a way that they are pointing towards the ceiling and then backward.

Full Body

Hip Raises

To do this, you can lie down on your back and raise your lips slightly from the bed. You need to keep the hips in the air for a few seconds before you bring them down.

#chronic pain #it’s kinda hard to read on the website so #i don’t think they had anyone proofread it but i like the exercises so uh #chronic illness #chronic fatigue #chronic fatigue syndrome #cfs #me cfs #cfs tips #cfs help #cfs (chronic fatigue syndrome)#cfs/me #fibro #fibromyalgia #fibro problems #add any tags #my brain is too foggy to think of any other illnesses that can cause this

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