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jesusonafrickinboat · 1 year

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May is ME/CFS Awareness Month!

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Chronic Fatigue (CF), a symptom of many chronic illnesses, is not the same as Chronic Fatigue Syndrome (CFS). There is a push for ME/CFS to be exclusively known as Myalgic Encephalomyelitis (ME) in the future

ME/CFS is a complex, fluctuating, chronic medical condition affecting multiple body systems and symptoms can change unpredictably

Post-exertional malaise (PEM) is the hallmark of ME/CFS

More on symptoms: Symptoms of ME/CFS

ME/CFS affects an estimated 836,000 to 2.5 million Americans, the majority of those diagnosed being AFAB

An estimated 90% of people with ME/CFS are undiagnosed

About 25% of people with ME/CFS are bedbound or housebound for long periods

Most of those diagnosed never regain their pre-disease level of functioning

The root cause of ME/CFS is unknown

Possible triggers include: viral infections (such as mono, the flu, or COVID-19), bacterial infections, physical or psychological stress, and immune system changes. There may also be a genetic component

There is no cure or approved treatment for ME/CFS

However, some symptoms can be treated. For example, PEM is treated by pacing. More on treatments: Treatment of ME/CFS

ME/CFS costs the US economy about $17 to $24 billion annually in medical bills and lost incomes

The ME Association and the CDC have more in-depth articles on ME/CFS for more information

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kelliaellis · 2 years

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May 12th

Today is May 12th.. On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck. FMS – Fibromyalgia Syndrome CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis MCS – Multiple Chemical Sensitivities

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asharestupid · 6 months

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I don't think some ppl understand that when disabled ppl say that it takes a lot of work to do something they're saying that it's a lot harder for them to do it than it is for you. To you it's a 20 minute task, for me it will take 2 hours minimum. All it takes from you to do it is cleaning supplies. Meanwhile it costs me a meltdown, very sore muscles, and 2 days of rest after. There's also a good chance I will forget to eat, drink, or use the bathroom while I'm doing it. When I say it's hard for me to do something I mean it's hard I don't mean that I don't want to do it.

#disability #autism #disabled #cfs #chronic fatigue syndrome #chronic fatigue #disabilities #actually disabled #disability awareness #physical disability #autistic people #adhd

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sparkles-and-trash · 11 months

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Sometimes it feels like people kinda forget your pain when it’s chronic.

When someone healthy/able bodied gets sick or injured, people will pour out their support and understanding right away, which is good, obviously.

But after a while, people get tired of hearing about it.

They get tired of having to work around it, tired of having to be understanding.

But just because your empathy fades, doesn’t mean our pain and grief does.

I’m so, so tired of my pain. Of having to be understood. Of not having any chance to have a proper career, or dreams, or relationship.

I’m tired of my hands not working enough for me to write, draw and craft, which is what is normally keeping me going.

They just keep getting worse.

I’m tired of the pains related to my endometriosis and pcos making me unable to eat properly, get any exercise, and for making me bedridden more and more these days.

I’m tired of having to beg for support in what little buisniess I manage to make sure I survive during my rough recovery periods after surgeries and bad flare up’s.

I’m tired of knowing my life will not be a long one.

I’m tired of complaining, of being in pain, of grieving, of feeling like a burden.

There are no breaks for me.

That doesn’t mean I get used to it. I will never be used to it.

And I think I should be allowed to talk about all of this without feeling like a burden.

I probably won’t ever get to that point, but this is me trying to get there.

By being open and honest, and hoping that at least one person takes the time to read.

If you’re still here, still reading, thank you. It means the world.

Be kind to those around you who are like me.

We’re not happy about our situations, either, but having people willing to stick around and listen makes it a little easier to survive.

Thank you ❤️‍🩹

#chronic illness #chronic illness awareness #chronic illness psa #chronic illness support #disabilties #disability #lupus #lupusawareness #living with lupus #endometriosis #pcos #cfs #scoliosis #chronic migraine #chronic mental illness #mentalheathawareness #irl tag #personal

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magiclovingdragon · 1 year

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Ableds really dont get that plans being made, changed or yes, even cancelled (especially when you have already used spoons getting ready) last minute is really annoying and distressing in a different way than it is for them.

Yes for you (abled person) its annoying the swimming pool down the gym is full of kids so you dont want to go. I, however have used spoons already getting ready to go & cancelling last second, so now I have to get changed back out of my costume and unpack everything from my bag, making me more tired & in pain, is infuriating.

And dont ask someone “are you annoyed now?” if you’re going to get pissy if they say yes… Yes, I know its not your fault but its still annoying

And they’re saying about going this evening now, saying this AFTER I’ve already changed again out of my costume and into my normal clothes… like no, the opportunity has been and gone. I’m tired, in pain and now I’m really annoyed, I’m not going and putting myself though even more stress

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mega-aulover · 11 months

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Can I just defend Peeta: When Peeta call's Katniss Pure she takes ofense. What Peeta was wisley stating, is that Katniss is innocent. She wasn't cynical or jaded. She wasn't aware of how amazing she was. Katniss didn't understand the effect she had in the lives of people. Katniss was so innocent she mistook what he meant by Pure!

#katniss everdeen #everlark #peeta mellark #the hunger games #catching fire #CF #thg #mockingjay #Katniss #Peeta #meta #Katniss was not aware #She was oblivious #mj1 #mj2

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seppukart · 2 years

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Doing "my best" is doing as much as I can without being in unbearable pain and/or injuring myself. I am glad that you have a body that has never made you reevaluate the definition of this term, but that is not the case for some people.

#central sensitization #chronic fatigue #chronic illness #chronic pain #disabled #fibromyalgia #interstitial cystitis #somatization #spoonie #actually disabled #physically disabled #cfs/me #myalgic encephalomyelitis #cripple punk #disability #disabled pride #disabled problems #disability awareness #my posts

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crazycatsiren · 2 years

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I wish I could get people to understand, there's literally a ticking clock when I'm on my feet for how long I can remain in a standing position. Please, give me my food, check out my items, get me through the line. I don't have the seconds to minutes to spare to exchange pleasantries, when it could mean the difference between walking out of there or fainting on the spot.

#disabled #spoonie #me/cfs #pots #chronically ill #disability awareness #cripple punk #chronically fatigued

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murruspins · 2 months

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Welcome to my blog!

Hello!! Welcome to murruspins :3!

This is a special interest blog, however it also kind of acts like a diary. I write down what I’m thinking or hyperfixating on, same goes with my regular interests! This blog will also have alot of alterhuman content, as it’s a big part of my identity!

About the owner of this blog…

My name is Murruyu! I’m a transfem enby, and would prefer if you used they/it/xe on me aswell as fem + neutral terms! If you don’t respect my pronouns, I’ll simply block you, no biggie! 🤍

My special interests are mcyt (hermitcraft & life series specifically), horror, metal music and bio! When I say bio and horror, I mean all aspects. I love horror games, movies, shows, etc. And I love all biology paths/subtypes! (Eg: wildlife bio, botany, palaeontology, and more!)

I’m the host of a minor bodied DID system, however I won’t get into that much on this blog, as this is my personal blog! However, I will talk about our physical disabilities because they impact my everyday life, and this is a diary blog after all! [I will mainly talk about my EDS and CFS]

As I said before.. I am an alterhuman! More specifically, here is a link to all my kintypes!

This list may be updated/edited in the future, but for now, these are all of my (known) kintypes! Some stronger than others. More specifically, I have a super strong connection to the feline clade, more so than my other kintypes. Obviously, due to being alterhuman, I do not identify as human. I instead identify as my kintypes, I may post about my alter-humanity frequently 🫶

I am ALWAYS looking for moots/friends!! Click here to see my interests + adult mutuals are okay, just no dms!

DNI/BYI

DNI:

• People who hate on ANY of my special interests. No offence, but you’re not welcome here, this is my safe space! [PS: being afraid of horror or animals is not the same as hating on them, if you have a phobia of something that’s completely fine! Just don’t insult my spintrest on my page 🤍]

• Anti alterhuman, Anti Age regression, Anti pet regression

• Endogenic systems, Profic/Proship/Darkship/anything that fits into that category.

• FURBY BLOGS!!!!! Furby centred blogs/Blogs with furbys as their theme/pfp dni. Moots r okay but please add a warning whenever you post them 😭🫶. I’m terrified of those little things.

BYI:

• I’m autistic, I need tonetags! If you’re going to ask anything, I’d appreciate you using tonetags so I can understand you better! :3

• Adults may not ask to be my friends, No offence, just for boundary and comfort reasons, I am a minor after all. Mutuals are fine!

• I generally do not engage in discourse, if that’s something you’d like to know before following! This blog is focused on being diary, alterhuman and interest themed!!

• This is my main blog! If I’m active, it’s probably here. But my side blogs are…

> @liostims , my stim blog

> @lovesicksyndicate , our sys blog

> @faunafeature , my animal info dump blog

> @kiyoscove , my agere blog

> @murrupurrs , my petre blog

… Please keep in mind many of these blogs may be inactive, as this is my main!

Finishing up/Extras…

. . . Emoji games!

How these games work; ask via the ask option, and write an emoji + any other info you’d like, and I’ll answer! Just a small game for fun!

🐾 , info dump about a random animal I’m fixating on at the time! (Please include if you don’t want a specific animal due to a fear, for example: bugs).

🐈 , song of the day! ask and I’ll give you a song that’s been stuck in my mind recently, or just a random song off my playlist!

🐍 , daily check in! I’ll give you a small rant about my day so far, and tell you how I’ve been recently! (I’ll try to keep it positive.)

"(Therian/biology/metal/anything related to my blog) culture is…" asks are also always appreciated!! I love seeing them, and I love interacting with people!!

Blog tags . . . !!

#murru mews 🐾 | my general tag! Diary entries!

#murru hisses 🐍 | vent posts

#murru’s asks : replies to my asks!

#murru’s rants : rants!! Either in response to the emoji games, or just to infodump :]

#murru’s playlist : anything to do with music!

#murru’s toybox : anything to do with my collections!! I collect a lot of things, so this tag will be full of things in my collection :]

#murru’s games : an additional tag, just for my emoji games!

PS: blog creation date.. Jan 30th 2024!

Thank you for reading !

. . . Enjoy your travels, dear friend!

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neco117 · 2 months

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Heute ist International Long Covid Awareness Day. Bei mir sind's inzwischen 21 Monate schwer-krank-sein. Kognitive Symptome wie Brain Fog, Wortfindungsstörungen und Konzentrationsschwierigkeiten. Körperliche Symptome wie immerwährende Erschöpfung/Fatigue, Muskelschwäche und Muskelschmerzen. Ich habe so viele Symptome, dass ich ständig welche vergesse aufzuzählen...

Mein Leben hat sich seit meiner Corona-Infektion extrem gewandelt. Ich bin arbeitsunfähig und nach einem Crash auch pflegebedürftig. Meine sozialen Kontakte beschränken sich auf ein Minimum. Ich habe keine Ahnung, ob ich je meinen Bachelor machen kann. Ich habe keine Ahnung, ob ich je mein eigenes Geld verdienen kann.

Ich habe vermutlich ME/CFS. Eine schwere Multisystemerkrankung, die oft postviral ausgelöst wird. Eine Erkrankung, für die es noch keine verlässlichen Biomarker gibt. Eine Erkrankung, die kaum erforscht ist und für die es noch keine Therapie gibt. Eine Erkrankung, deren Betroffene eine sehr geringe Lebensqualität haben. Ich habe wahnsinnig Glück, dass meine Familie mich auffängt und wir finanziell recht gut darstehen. Das haben viele nicht.

Wir brauchen dringend bessere Versorgungsnetze, Informationsverteilung, Forschung(sgelder), Anlaufstellen, Fortbildungen für Hausärzte und Hausärztinnen und Entstigmatisierung!

Die gängige Aktivierungstherapie kann sehr vielen long Covid Betroffenen extrem schaden (siehe ME/CFS).

Auf's Hoffnung-nicht-aufgeben und auf gute Tag 🥂

Ein paar Links zum informieren:

https://www.mecfs.de/was-ist-me-cfs/

#german stuff #heute mal auf deutsch die Konzentration reicht nicht für Englisch #personal #german politics #healthcare #long covid #me/cfs #chronic illness #disability #international long covid awareness day

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grymmdark · 6 months

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one of the worst parts of chronic fatigue for me, besides having my life taken away from me becuase i'm barely capable of doing even the thigns i need to do let alone the things i want to do, has got to be that i just dont really realize when im tired or exhausted. like, when youre in pain all the time the pain just becomes background noise and that can make it hard to recognise pain, but this also happens with fatigue for me. so i often dont even realise when i need to take a break or am pushing myself too far until its too late.

#grymms spectacular fucking posts #CFS #cfs/me #chronic fatigue #chronic illness #im generally really bad at being aware of my body for a variety of reasons (dissociation adhd autism etc) plus just getting used to things #that i shouldnt get used to and then not realizing when theyre happening is just. like its so terrible idk how to describe it to someone #who doesnt also feel it. and theres not much i can do about it either

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moriahnightingalesportfolio · 9 months

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4 years ago my life changed forever. I became completely disabled by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

ME/CFS is the chronic illness that ended my career before it even began. I went from an honor student working and walking for hours every day, to a fully disabled person who can barely climb a flight of stairs and will never be able to work again. Even the simplest things like making a bed or texting a friend can be physically impossible because of how debilitating this illness is.

There are NO FDA approved treatments for this illness, and the number of people with ME/CFS is rising exponentially because of the high overlap with long covid.

Please take a few minutes to educate yourself about the basics of this devastating illness. @meactnet and https://www.cdc.gov/me-cfs/about/index.html are great places to start

#me/cfs #MEAction #chronic illness #chronic fаtiguе ѕуndrоmе #disability #disability activism #long covid #mecfs #mecfs awareness #MNart

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kelliaellis · 2 years

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May 12th is Coming

Each year on May 12th, we observe International Fibromyalgia Awareness Day. Globally, we also acknowledge Awareness for Chronic Immunological and Neurological Diseases (CIND), typically considered Chronic Fatigue Syndrome/ MyalgicEncephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS). This does include other conditions such as Multiple Sclerosis, Addison’s Disease, Lupus, Chronic…

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asharestupid · 9 months

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I don't think people understand how bad cfs actually is. Like whenever I tell ppl a lot of them are like "oh haha yah me too" and just... No??? A few hours ago I was so tired I couldn't even move (not an exaggeration, I was literally stuck in bed, laying down without being able to even turn over) cfs is an actual thing and I hate that ppl do this with things they don't understand. Disabilities aren't adjectives.

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sparkles-and-trash · 2 years

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Listen, I know it’s just a meme, a joke, but the whole «you’re literally *age*, go get a job» type of replies that are all over Twitter makes me want to shrivel up and die.

I already feel like a waste of space because I can’t contrubute to society in a «normal» way.

Seeing those tweets makes me feel like I’m not worthy of having opinions or exist in fandom spaces because I’m too sick for a conventional job.

#and I’m tired of acting like it isn’t ableist af #irl tag #personal #chronic illness tag #cw ableism #ableism #neurodivergency #neurodivergent #adhd #autism awareness #adhd things #cfs #chronic illness life #chronic illness

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cfs-crohns-colitis-warrior · 1 year

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This week is M.E / CFS awareness week! (8th to 14th May)

I hope to post some awareness poster things from the M.E Association IG page, as this is an important cause for me.

It’s important to me that people know that M.E / CFS is a very real illness and can be incredibly debilitating for people. Everyone is different and so no two people will suffer the same way with this awful illness, however we do all have it for life as it is a chronic illness.

There is currently no cure, no diagnosis test, and very little in the way of treatments. More funding and research is needed to overcome these obstacles and I hope by raising awareness more people will also understand what this chronic illness means for people who have it and that there’s not much of anything they can do about it.

#chronic illness warrior #chronic fatigue syndrome #myalgic encephalomyelitis #cfs/me #chronic illness #awareness #chronic illnesses #exhaustion #me/cfs #me/cfs awareness #me/cfs awareness week

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