#cfs awareness

[jesusonafrickinboat]

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

[trulynamelessworld]

✨ Things I'm insecure about because of my disabilities ✨

Being unreliable

Having a messy room

Abdominal bloating

Not being 100% on top of my hygiene

Having to excuse myself to the washroom more often

Using my mobility aids

Random bruising

My chicken (weak) legs

Having to explain myself to strangers

Taking the accessible seating on the bus/train

Tripping over myself

My brain fog (I used to have a fantastic memory, I feel like I come off as stupid now)

Being super sweaty

Not being "good representation"

Leaving functions early

Sitting on the floor in public

And so much more. This is a reminder that you're not alone in feeling gross or undesirable, it's also okay to feel that way.

Sometimes you need to feel the feelings before you deal with them.

[tiredlakes]

[hellyeahsickaf]

Low Spoons and Hygiene

Sometimes being disabled means struggling with hygiene and that can be embarrassing, even though it's not your fault or a reflection of you as a person. Nobody wants to be stinky or feel dirty, especially when a lot of illnesses and disabilities can entail symptoms like excessive sweating that can make the issue of struggling with hygiene a million times worse.

But smelling bad is the least of your worries, as poor hygiene can lead to things like skin infections. Bacteria and fungi like hanging around in stagnant, often damp areas that collect sweat. And most people have folds- even if just a little, which can be the ideal habitat for dangerous microorganisms. Not changing your underwear/bra or washing your body for an extended period can lead to things like jock itch, intertrigo, yeast infections, athlete's foot, UTIs (anyone can get one and they can spread to the kidneys within days or even hours- and you need those little guys!), all sorts of complications. The existence of foul or sometimes even a slightly "sweet" odor on your body or even in your urine tends to indicate the existence of bacteria (it's why armpits stink) or fungi like candida. Dental hygiene is equally important- an infected tooth or excessive cavities can be bad news. If you experience these things or struggle to regularly care for your body, it's not something to be ashamed of. All of those complications can and do happen to people who do everything right.

Note that issues like UTIs or dental infections don't tend to just go away on their own and need to be treated as urgently as possible.

However, I'll share some things that may prevent or remedy issues like infections and odor that's gotten out of hand and hopefully some may find this list helpful in some way. Any products I've listed may be found at other retailers or at different prices, they're just examples. Feel free to add on to it.

The bare minimum is always better than nothing. Brushing with just a dry toothbrush, using disposable body wipes or a washcloth/sponge instead of a shower, dry shampoo (the sprays are actually pretty bad for you, I'd stay away from those if possible), leave in conditioner, also whole body deodorant is a thing. If the most you can do is change your clothes- hell even just change your bra and/or underwear, it can be the one thing between you and an awful infection.

If infections are a concern, like if say you suffer from chronic UTIs or yeast infections it's advisable to wear breathable cotton underwear.

If you can't get up to brush your teeth or struggle to do so, it may be helpful to purchase disposable toothbrushes. These ones have floss picks attached.

Flossing is just as, if not more important than brushing. If you only have the energy to floss on some days, do that. If you need to keep floss picks and a place to dispose of them near your bed, then that's fine (just don't let it pile on without disposing of it and create a biohazard). it can help remove food particles that help create a breeding ground for bacteria. Also gently moving in and out between your teeth with slight movement if needed is ideal, don't roughly saw across your gums, ouch.

If you struggle with wiping say due to mobility issues, there are products for this. Wiping back to front as an alternative risks yeast infections and UTIs. It's a very common cause of these diseases due to bacteria like e-coli. We do not want that.

Crashing and can't wash your sheets? Out of shirts with no energy to do the laundry today? Antimicrobial fabric spray may help with the odor and bacteria that accumulates on fabric as a temporary fix until you can properly wash it. Try not to wear clothing or interact with fabrics like blankets and couches that are still wet from the spray, as that can irritate the skin.

Try to avoid "feminine wash" products if possible, you don't need the fancy Summer's Eve premium strawberry hibiscus blush scented whatever, it can fuck up your PH and kill good bacteria despite claims to do otherwise. Same with PH wipes. It's recommended not to use soap on your genitalia, especially scented and especially if you have a vagina. If you must use some sort of soap, dermatologists typically recommend the most basic, unscented wash. And do not put it in your body by any means.

Rinse free shower sponges have been a life saver for me, especially the ones that also work as shampoo (it's probably not color safe tho). You just add water, lather, and make sure you dry off well. If it helps you determine how much to buy, I normally find myself using maybe 3-5 sponges each time.

OTC jock itch cream can work for some fungal infections on the body not limited to jock itch but if you see no difference or worsening within a few days of using it, consult a dermatologist as you may need something different or stronger.

Unscented pads and tampons are best and should be changed every 4 hours or so ideally. Never leave a tampon in for over 8 hours. Despite common fears, 9 hours won't give you toxic shock syndrome, that normally takes a few days and is quite rare with tampons but that doesn't mean that 13 hours or something is good or safe. I've just heard some say that sex ed scared them away from tampons after being told stories of TSS. I hear that menstrual cups are also a great alternative that many don't consider.

Monistat and similar yeast infection products often come with different options like 3 day treatment, 5 day treatment, 7 day. I know you want to feel better ASAP, but just take into account that 3 day will be highly concentrated and can cause more burning than the 7 day. Longer treatment may also be more effective in some cases. Penile yeast infections exist as well. Just be aware that some products are more potent than others regardless of birth sex. Antifungals in general may cause itching and/or burning, which some are more sensitive to than others or may even find triggering in cases where it must be applied to the genitalia.

Hydrocortisone cream is your best friend if you're experiencing itchiness due to things like skin infections, contact dermatitis, yeast infections, etc. But please don't use it to mask the symptoms of an infection without treating it.

How frequently you need to wash your hair varies by hair type. This can vary between every 2 days for some and every 1-2 weeks for coily and textured hair. Make sure you look into what is ideal for your hair type. And again on days where you cannot wash, disposable sponges and dry shampoo can be a life saver.

If something is discolored, odorous, itchy, inflamed, bumpy, producing moisture, warm to the touch, oozy, weepy, splotchy, sticky, burning/painful, it may likely be an infection or in some cases an allergic reaction. Familiarize yourself with what different skin infections and diseases may look like on your skin tone. Ringworm and other fungal infections for instance may appear red or pink on fair or lighter brown skin, but on darker skin may appear gray or darker brown.

Fungal infections are also super fucking contagious. To other parts of your body, other people, even to pets. Wash your hands well with antibacterial soap, especially before and after applying any topical treatment or touching the area in any way. After a shower, PAT the infected area dry and do not reuse that towel or use on other parts of the body.

Invest in a shower chair if you feel it may help you, it's one of the best things I've ever bought. I didn't want to get one at first because it felt like I was "giving in" to my disability more and more but that's the internalized ableism talking. Get the shower chair.

A bar to help you stand from the toilet/tub/shower chair may also be helpful.

Again, feel free to add to the list if you want!

[northernslug]

I was recently diagnosed with a condition called myalgic encephalomyelitis. Today I have been going down a research rabbit hole and learning as much as I can about my illness. Because I’m a nerd, I also made a few infographic slides to help those who don’t understand what the condition is. Hope this is helpful for folks!

[chronicallydragons]

could someone pretty please explain to my autonomic nervous system that we are not actually under attack or being chased by tigers when we...*checks notes*...are sitting up?

[authorspirit]

Maxis Match CC decor bags

Alternative title: I love lumenniveus’ bags. Recently I felt like a lot of cc collections of creators I like created bags, so I decided to share my favorite ones (which are not that shared and should be really). Most bags here are decor only but @lumenniveus’ bags are functional and act as storage or more! Also my favorite bag is the Nordace Siena inspired one because I have it in real life but the pastel blue got out AFTER I had bought my beige one.

▬ 1 || Juliette’s bag ▬ 2 || Siena’s bag ▬ 3 || Genevieve’s bag ▬ 4 || Celina’s bag ▬ 5 || Jillian’s bag ▬ 6 || Yolanda’s bag ▬ 7 || Estelle’s backpack ▬ 8 || Amy’s bag ▬ 9 || Leïla’s tote bag and « CC is a luxury » travel bag

I had forgotten the CC is a luxury graphics until I actually read it for this cc recs and I love it.

Big thanks to the amazing cc creators: @lumenniveus, @maxsus, @taurusdesign

[sparkles-and-trash]

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 ❤️‍🩹

[crazycatsiren]

"Having this illness destroyed my life" and "it's taught me things that I'm never giving back" can in fact coexist.

[murruspins]

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

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

MOOT SPECIFIC:

• I would appreciate if you tag your posts to do with war, guns & etc to do with tw war or war. I grew up in a situation that causes these to be big triggers for me. Thank you 🫶

• If you post dead animal imagery PLEASE add a tw or cut off or SOMETHING. I know this is specific but I’ve had a moot do this before and it was actually insane. I admit I’m a bit sensitive but I still don’t want to see that

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!

[compassionmattersmost]

The Art of Pacing: Managing Chronic Fatigue Syndrome with Skillful Means

There is a rhythm to living with chronic illness, one that requires a kind of surrender. Those who walk the path with myalgic encephalomyelitis or chronic fatigue syndrome soon learn that pacing is not merely a strategy—it becomes an art form, a way of listening, of harmonizing with the body’s quiet whispers before they become cries. To pace oneself is to acknowledge the body’s finite energy, to…

[neco117]

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/

[chronically-persistent]

ME/CFS AWARENESS MONTH

Hello and happy May! As of today, it's officially ME/CFS Awareness Month, so I have compiled some resources to spread in the hopes of informing and bringing attention to this disease.

What is ME/CFS?

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex and debilitating systemic disease that varies in severity and presentation between patients. Some common symptoms are fatigue, sleep problems, widespread pain, difficulties in thinking and memory, and PEM. PEM (post-exertional malaise) is a hallmark of this illness, defined as a worsening of symptoms after mental, physical or emotional exertion that can last from days to even weeks.

Some other symptoms include: gastrointestinal problems, dizziness, difficulty concentrating, changes in mood, headaches, sore throat, skin rashes, musculoskeletal pain and heart palpitations. Science is still unsure how ME/CFS affects the body, but in many patients it appears after an infection with a virus.

There are no tests for ME/CFS as of May 2024, and the only method of diagnosis is a process of exclusion. As such, ME/CFS is critically underdiagnosed and many suffer without knowing. People with this disease are often recipients of medical gas lighting and negligence, with the average diagnosis taking around 1-5 years.

There is no cure, and there are limited treatments, most aiming to address individuals symptoms or comorbidities. Despite the misinformation still spread around, exercise is not a recommended treatment and can cause great harm to ME/CFS patients.

How Can You Help?

There are many organizations working toward awareness and quality of life for ME/CFS patients, and I'll list some of them below. This is not an exhaustive list, but be aware that there are many web sites that spread misinformation and harmful statements: any that talk about a cure or exercise therapy are generally ones to avoid.

If you can, please take a look at the information the listed sites provide and share their knowledge in whatever ways possible. I'll also include some resources for ME/CFS patients, and I encourage allies to look as well.

I hope you have a wonderful May, and to all fellow ME/CFS sufferers, know that you are not alone. We can do this.

(Also, please let me know if there are other sites you recommend, or if there are any personal experiences you would like to share. Treat this as an open invitation to share your stories if you are comfortable.)

Links;

[cosmereplay]

May 12th is Myalgic Encephalomyelitis Awareness Day. It's an illness I have lived with the majority of my life even though I didn't always have a name for my experience. It involves every single bodily system, especially the central nervous system. It causes debilitating fatigue. It can make it difficult to sit and stand, let alone walk. All medical tests come back normal, making it difficult to identify. There is no cure. It's often a post-viral illness, and many people with long COVID end up with an ME diagnosis.

It's not just a long list of symptoms, it forces you to change the way you live at a fundamental level. It makes you feel parched of life, then forces you to sip when all you want to do is drink deeply.

Want to learn more about M.E.? Check out the World ME Alliance.

If any of this sounds familiar to you or a loved one and you have any questions, please send me a DM! I'm happy to share my knowledge and experience.

[sparethedreamer]

Sick and tired of nurses and doctors having no idea what me/CFS is. Sick of hearing, "I've never heard of that.". So very tired of getting, "I've never seen someone in my office with that." I no longer wish to hear, "I have no idea what that is."

There are an estimated 2.5 million people in the USA (where I live) with myalgic encephalomyelitis. It has an estimated global prevalence rate between 0.2% and 2.8%.

Hello?? Medical community?? You might want to do at least a little bit of homework on this. I know you hate us, but especially with all the new peeps with Long Covid (very similar if not the same illness in many cases) you should at least know a tiny bit about this not-exactly-rare chronic illness.

[potstism]

asking the disabled community: what should i say or tell to my cardiologist? [LONG POST; SEEKING ADVICE]

reposting from my own reddit account on the r/POTS sub yesterday in order to achieve more reach!

hello to all. i hope you had a wonderful holiday season. my christmas day was less than perfect because i felt nauseous and had to spend a few hours lying down, but it wasn't the worst i've ever experienced to the point of absolute misery and it was worth the gifts i got that i'd been wanting (or at least i want to believe so).

i've discussed before how i constantly have a very high heart rate and it seems like that's been evermore present lately. it's not uncomfortable per se but it does drive me crazy, it's like being excited/anxious to the extreme except i'm neither, rather quite calm, but my physical response wouldn't lead you to believe that.

in addition to this, i had been complaining to my caretakers that i always (genuinely) feel like i'm on the verge of vomitting despite knowing i probably wouldn't, but i've come to realize that my vocabulary doesn't match what i'm trying to describe because i don't know how to explain it well ─ this could be due to neurodivergency, or just the fact that i am medically uneducated and only know as much info as your average person. it's not that i'm actually sick with something as much as that a number of internal factors are making my body act like it's sick and simply imitating symptoms, if that makes sense. it seems to me like this will be managable and/or hopefully preventable once i can put a name to what's going on, but the problem (and frankly whole point of this paragraph) is i'm having trouble finding those words. i believe, from my limited understanding, that the suspects are related to postural, orthostatic, and/or tachycardial origins, which should be self-explanatory.

now onto the main purpose of this post. i had a stress test done last monday, wherein my heart's response to increasing levels of walking on a treadmill was recorded, and that was also done while i was sitting down before even getting on. the nurse/assistant (or whomever i was being led by) said that my heartrate per minute was between the 90s-110s at first while resting, and then when i got on to start walking it got up to the high 120s. i had to stop halfway through the second level (4.5 minutes total) because i'm quite weak and unfit for intense exercise, in which i went to go sit back down and the numbers didn't really change until i was encouraged to take deep breaths; then it went back down to around 115. i was given a goldfish crackers snack and some apple juice to recover, and when i threw away my trash apparently i went back up to 120.

the results of the test were sent off to be read by my new cardiologist (whom i've only seen once directly so far) and today he said everything looks good... which does not add up, especially after the woman who was there with me (notably not a doctor or credible source of authority) remarked that it looked like POTS to her when i hadn't even brought it up initially. i'm thinking perhaps he [cardiologist] simply glanced over at it while on vacation without putting in much work, but either way this can't be right. maybe my heart, the organ itself, is healthy, but something is clearly going on that's making it work harder than usual and therefore affecting my quality of life in a negative way.

i've been seeking either a diagnosis of POTS or otherwise some form of answer & solution to my ailment, and i'm wondering if there's something i should say to get the ball rolling in my favor ─ if so, should there be a certain tone? should i use my mother as an advocate, since that's often necessary in order to convince a doctor to listen and carefully consider what the patient is suggesting? (i would also like to send these sources from a POTSie activist to him, the same person, that i had shared here before too.) if he insists that there is nothing abnormal, should i seek a second opinion, and if so are there any recommendations from this community that i can look into? i'm happy to be redirected anywhere that may help out, so thanks in advance!