#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

[ieatratsforbreakfast]

I feel like most able bodied people see wheelchairs as the worst thing that could happen to a person. When I discuss my want to have a wheelchair for various reasons, most peoples first reaction is to be surprised that I could voluntarily consider that.

But what they fail to consider is that, unlike them, I very much hate walking. It causes me pain and fatigue, it is a miserable experience.

So to any able bodied person reading this, yes some wheelchair users like walking, some want to gain that ability back, but that does not invalidate the feelings of wheelchair users who absolutely hate walking.

[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?

[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!

[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.

[magiclovingdragon]

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

[mega-aulover]

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!

[ieatratsforbreakfast]

There's lots of talk about how it is embarrassing using mobility aids in a world filled with ableism, but I'd also like to talk about how embarrassing it can be to not have the ones you need.

Today I had to stay home from school, and the only way I could manage to get up and pee was crawling on the floor.

That is so fucking embarrassing. I had to crawl to the bathroom and back because I could not stand up and walk.

I would have been able to go to school today, or even have been able to prevent this flare if I had the proper aids. As much as I love my cane, it is not cutting it anymore.

[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!

[unpottytrained]

Last night was terrifying...

I've had a very heavy and complicated past few days, and seeing the writing on the wall for my body I decided to do a full body shave so I could feel like I at least did something before one of my worst CFS crashes in ages. I completely lost mobility in the bathtub, and I had to be helped out by both of my partners I love with, and they had to hold me upright to dry my hair while I just sat there drooling unable to move and unable to speak. It took about an hour for me to get basic speech back. It took another hour for me to be able to move my arms and legs in a coordinated fashion. It took another hour before I could turn over on my own. And I sobbed harder than I ever have in my life because I know I'm never gonna truly recover from this illness...

All I can say is thank G-d for the people I have in my life. I genuinely cannot survive on my own or take care of myself and having people who are willing to essentially maneuver me like a ragdoll to keep me comfortable means the fucking universe to me ...

[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/

[crazycatsiren]

ME/CFS isn't a rare disease. It's estimated that 3.3 million people in the United States have it.

Before the COVID-19 pandemic skyrocketed the numbers and finally brought the public's attention to it, not only was ME/CFS poorly understood and its research underfunded, but also many people, including a large percentage of the medical community, didn't even believe it was real. ME/CFS patients, especially women, were still being diagnosed with hysteria in the 2010s.

ME/CFS is now starting to be classified as a neuroimmunological disorder. Its exact cause is not yet known, but between 60% and 80% of cases the onset is triggered by a viral or bacterial infection. It's is a biological disease, not a psychological/psychosomatic condition, and is not due to deconditioning.

[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;