#Chronic Fatigue Syndrome (CFS/ME) | Explore Tumblr Posts and Blogs

chronicallydragons · 3 months

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anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

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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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myalgicencephalomyelitiscfstom · 28 days

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Press release for this Canadian study [Metabolomic and immune alterations in long COVID patients with Chronic Fatigue Syndrome]:

“We do not actually believe that long COVID is a separate new disease,” explains rheumatologist and clinical immunologist Jan Willem Cohen Tervaert, professor of medicine, who is an expert in fatigue associated with rheumatic illnesses.

“Some symptoms — such as the loss of taste and chest pain — are very specific for COVID, but we see a common pathway with ME/CFS, which leads to the same fatigue, brain fog, post-exertional malaise, widespread pain and non-refreshing sleep,” he says.

#long COVID #chronic fatigue syndrome #myalgic encephalomyelitis #mecfs #me/cfs

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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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unveilandresist · 4 months

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by January 10th 1 in 3 people will have had this wave of covid. covid causes long term damage with each infection and wears down your immunity. you do not want this. there is no cure for long covid or me/cfs and there is a significant chance (last I checked I think it was 1/5 infections) of getting long covid that increases with each infection. please protect yourself and your loved ones by wearing a mask. variants have become more transmissible so a n95 or kn95 is the minimum protection to keep yourself reasonably safe(r) from getting covid.

it is important to understand often viruses do not simply clear up and go away. like chicken pox and shingles or what we now think of as polio that is actually post polio syndrome. polio symptoms were mild and 75% of cases are asymptomatic. we do not yet see the full scope of what this virus will do over our lifetimes. as someone who had my entire life derailed by me/cfs after having mono, (almost 10 years ago! it hasn't gotten better!) we have to take pathogens more seriously if we care about ourselves and our communities.

I'm willing and open to talk with people who want to understand better what covid does to our bodies and how we can best practice community care and also harm reduction if we're stuck in unsafe situations at home or work (certain mouthwashes and nasal sprays can help).

if you're watching what's happening in Palestine and live in the US, the government doesn't care about your life either. They lied about palestine and they lied about covid too. It is not just a cold.

#covid #solidarity #mutual aid #social justice #chronic illness #disability #me/cfs #chronic fatigue syndrome #mask up

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chronically-persistent · 3 months

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You know I’ve been thinking, there should be no guilt in experiencing happiness as a disabled or chronically ill person. We don’t need to suffer every waking moment to justify our experiences and our truths.

Joy is a universal right. And that includes us.

#chronic illness #disability #chronic fatigue syndrome #me/cfs #myalgic encephalomyelitis #chronic pain #fibromyalgia

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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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thatchronicfeeling · 10 months

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July is Disability Pride Month

Let’s celebrate by keeping disabled people ALIVE and SAFE.

Want to know how you can help?

WEAR A MASK.

(FFP2/3 or N95 give best protection, especially the ones that fasten behind your head)

#disability #disability pride month #immunocompromised #me/cfs #myalgic encephalomyelitis #chronic fatigue syndrome #ulcerative colitis #ibd #Inflammatory Bowel Disease #pots #Postural Tachycardia Syndrome

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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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chronicallydragons · 1 year

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I love how people with chronic pain can be at extreme levels of pain and just be like “My body is ouchie”

#it’s me my body is ouchie #chronic pain #chronic illness #disabled #fibromyalgia #me/cfs #gastroparesis #disability #migraine #postural orthostatic tachycardia syndrome #chronic fatigue #chronic fatigue syndrome #post exertional malaise #pwme #pots #spoonie

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gentlemanbutch · 8 months

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I am so tired of medical professionals. I am so tired of having to try to speak in code so they listen to me, because apparently just outright stating my symptoms is the incorrect way of doing things. I am so tired of trying to give them enough details so they understand, but not too many details, because then they might think I’m dramatic. I’m so tired of them not bothering to learn any of my history and just being told I just need to eat less, or drink more water, or get out and exercise. I’m so tired of having to pretend to not know what I’m talking about. I’m so tired of arrogant pricks who don’t know what’s going on being too proud to refer me fo someone else. I’m so tired of being brushed off if I did my own research or have theories about what’s happening in my own body. I’m so, so goddamn tired of not being believed about the experience of my own life.

For all these providers with enormous fucking power that you use to abuse, gaslight, and dismiss patients who have spent years in pain — I hope you rot.

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thebibliosphere · 1 year

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“You’re sitting, but it feels like you’re running for a bus,” she explains. “Your body’s like, ‘You need to stop!’” She compares it to the after-effects of an all-nighter, only she’d had a full night’s sleep beforehand. This lack of explanation was alarming. She couldn’t comprehend why sitting in class was so draining. Naturally, doubts crept into her mind. What if, on some subconscious level, she was faking everything?

*

Despite ME/CFS’s low recovery rate, since the late 1980s certain researchers and clinicians, particularly in the UK, have touted two ‘cures’: cognitive behavioural therapy (CBT) and graded exercise therapy (GET). The wider ME/CFS community—including clinicians, researchers, and patients alike—discredits both. They’re rooted in the erroneous belief, known as the cognitive behavioural model, that the condition is a psychiatric disorder and its physical symptoms are psychosomatic. “It’s a multi-systemic disease,” says Professor Simon Décary, a University of Sherbrooke physiotherapist who researches long COVID and ME/CFS care outcomes. “There are vascular, neuro-inflammatory, and postural problems. You can’t create these with your brain.” Understandably many patients do develop psychiatric symptoms, but they’re a consequence of their illness.

Just going to leave this here for anyone who needs it.

Bolding mine for emphasis.

#me/cfs #myalgic encephalomyelitis #chronic fatigue syndrome #long covid #it's me #I needed it

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myalgicencephalomyelitiscfstom · 2 years

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Somebody shared the following today saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much" Here's the TikTok link: https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070

#spoonie #myalgic encephalomyelitis #chronic fatigue syndrome #me/cfs #chronic illness

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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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