#Managing ME/CFS Symptoms

[compassionmattersmost]

Optimizing Sleep for ME/CFS: Strategies for Restorative Rest and Well-being

Improving Sleep Quality for Individuals with ME/CFS Living with ME/CFS presents unique challenges, especially when it comes to achieving restorative sleep. Good sleep hygiene is essential for managing symptoms and enhancing overall well-being. Here, we explore various strategies to improve sleep quality for those with ME/CFS, including maintaining proper sleep hygiene, maximizing deep sleep,…

[tele-mesmerism]

when i got my diagnoses the cfs dx felt so secondary and less of a big deal than fibro but i wish theyd put emphasis on how much you can destroy your body permanently. but ofc they wouldnt have said that bc they were still teaching GET at the time, they were recommending treatment that wouldve damaged my body so much

[kelsonius]

Just realised I've been wearing my shirt backwards all day.

[mrs-snape5984]

“There is a light and it never goes out…”

“Take me out tonight. Oh, take me anywhere, I don't care, I don’t care, I don’t care…” (“There’s a light that never goes out” by The Smiths)

Overstimulation. Disorientation. Light sensitivity. Chronic pain. Fatigue. These are only a few of those symptoms, which are torturing me day in and day out for the past two years, already. Due to them, caused by a disease, that is called “Myalgic encephalomyelitis/chronic fatigue syndrome” (ME/CFS), I’m currently forced to live a life within the strict confines of my dark and silent room, mostly enduring my daily existence in solitude.

I miss being a part of this world….and fuck, I miss being a part of other people’s lives! Living like this makes me feel like an old piece of furniture, which has been stored away in a hidden chamber…not worthy enough to be used or seen by anyone, and yet still not bad enough to be discarded.

Some months ago, two wonderful people started taking me out to see their worlds by sending me pictures and videos of the places, they’re heading to. Thanks to them, I’m allowed to get a glimpse of places, I’ve always dreamed of being able to explore them on my own.

Furthermore, something else became apparent whenever one of these precious gems of human nature took me with them: I wasn’t just carried around in their phones, but they carried me in their hearts. This realisation blew my mind! It’s not only me, who’s clinging to them as if they’re my lifelines…no, this little German mess, that I am, became important to these people, too! Words can’t express how grateful I am for our connections…and that I was also lucky enough to find true love in this bond (I love you, R. 🖤).

One of those amazing people is my beloved sister in Christ @vulnus-sanare, who will soon come to visit me in my small world. Finally, I’ll be the one, who can show her the beauty of the tiniest things in my environment…always surrounded by the securing gloominess of the nights. Magda, my heart, I’m going to introduce you to the stars above my town, to the soothing sounds of the Moselle River right next to my house and I hope, we will manage to experience the mesmerising dance of the bats in the vineyards, if we take my wheelchair with us. I can’t wait to have you here and pull you into the tightest of all embraces, sweetie!

I’ve commissioned my dear friend @snake-queen7 to create this breathtaking piece of art of Severus and my undeniably self-inserted OC Jules on a nocturnal walk through the vineyards behind my house. Before I caught ME/CFS, I used to enjoy these nightly strolls in order to watch the bats with my children, so I sent her a photo of the exact spot, I want to share with Magda. Since it was Severus and Snapedom, which brought us together, it’s only fair to bring our beloved dungeon bat to this special place as well.

My friend, I’m more than happy with the outcome of your artwork and it’s a pleasure to share it with all those lovely people of our Snapedom. Please take my apologies for taking so long to write this post, but I wanted to honour your work the way, it deserves to be honoured. For this reason, I had to wait patiently for a moment, when my brain wouldn’t refuse me to do its job (brain fog is such a pain in the ass!). Thank you for everything, Natalia! 🥹

🖤Severus & Julia🖤

🖤Sevy & Jules🖤

[samreich]

Dad and brother dropping me off after our road trip was cut short due to my testing positive for COVID.

Miraculously, even though I contracted it before we took off (Elaine got it too), they were both fine.

After testing positive with symptoms for 16 days, I seem to be on the other side of it, and not the worse for wear as far as long-COVID symptoms are concerned.

That said, I have an entirely different relationship to my body now, and am constantly battling inflammation anyway.

As a good friend of mine with CFS says, chronic illness changes your behavior so much, you never again know if you're "healed" or still "managing."

[cripplecharacters]

Hi there! I'm working on a modern supernatural story, and I've got a side character (the main character's best friend) who deals with chronic fatigue syndrome. He's a sweet, goofy, confident guy, and he has friends who are happy to change plans to accommodate him when he has flare-ups. They'll also help him out with chores or errands when he needs, with his consent. Naturally he gets bummed about his condition from time to time, but he's accepted that it's how he lives and with the help of therapy he's found ways to manage it. He also has plenty of hobbies and interests and grievances outside of his condition.

My question is this: I have a side-plot where the characters learn that a vampire has been feeding off him for weeks without his knowing, most likely using some kind of hypnotism. I'm wondering if the effects of consistent blood loss - fatigue, headaches, dizziness, etc - could reasonably be chalked up to a particularly bad CFS flare-up. Or would that be something where it's more likely he would notice the difference in severity of his symptoms and realize something else was wrong? Assuming the vampire can heal up any bite marks he leaves.

For the sake of clarity, he's had CFS most of his life and I'm taking care to avoid implying that it has anything to do with the vampire attacks. I'm just wondering if his symptoms would help hide the feedings or not.

Thank you!

The short answer: absolutely yes, this seems like it could be chalked up to a bad flare-up.

The long answer: I'm going to use the CDC's description of CFS/ME to lay out pretty exactly why it would work for both you and anyone wondering why exactly it would work.

A list of symptoms from the CDC has 3 core and 2 that you only need 1 out of 2 symptoms to have CFS.

Core: Lowered ability to do usual activities due to fatigue [that is not relieved by sleep/rest] that wouldn't have been an issue before illness

Core: Post-exertional malaise (PEM), which is a worsening of symptoms after physical or mental activity that wouldn't have been an issue before illness. Often described as a 'crash' and can include feeling dizzy, having difficulty thinking, headaches, or feeling ill. It can take days, months, or longer to recover from a crash and it's hard to predict how long a crash will last or what will cause it.

Core: Sleeping problesms; even a full night's sleep doesn't help symptoms much and might not help at all. Might have trouble falling or staying asleep.

Other: Problems with thinking and memory, like 'brain fog' or slowed thinking or trouble remembering things or paying attention.

Other: Orthostatic intolerance, meaning that symptoms can get worse while standing up. This can make people feel lightheaded, dizzy, weak or even faint.

I've bolded the symptoms on the list that match your stated symptoms of vampiric blood loss: "fatigue, headaches, dizziness, etc." and as you can see they match up pretty exactly!

Your character could perhaps do something that required a decent amount of mental or physical extertion, and perhaps it did or didn't cause a crash but at around the same time the vampire could have started to feed off of him. This might seem to prolong the 'crash' and your character might not think twice about it, just realize that they're feeling pretty miserable in a way not unknown to them.

I hope this helped!

PS, I really enjoy modern supernatural stories, and if you ever feel like sharing it I'd love to read this.

— Mod Sparrow

[georgia-stanway]

I am completely overreacting I think the main problem is that it is more common for me to do a drill without getting feedback and so I can only self assess so much and I get like there's so many people you can only do so much but everybody seems to get at least something and I don't known if they're scared to correct me because they don't know how much is my cfs/me and I cry super duper easily like the moment I get frustrated so I come across as really emotionally delicate (which fair but I can handle constructive criticism FFS) or of they just don't notice me or what but I can't improve if I don't get feedback and if I'm not allowed to stretch myself sometimes

I think it also doesn't help that if I do do stamina (which I confess I am often conveniently half an hour late which means I miss it.) i have to go in with the beginners because I'm really slow and I can't do as much because you know I have chronic fatigue syndrome. So I'm already positioned in this weird in between space

Synchro is pissing me off

[myalgicencephalomyelitiscfstom]

From The #MEAction Network

Wondering about the terms PEM or pacing? Have you seen #StopRestPace and were curious as to what it referenced? Maybe you have been in our community a long time and want to save some easy ways to explain these concepts to others. Perhaps you have seen pacing misused and want to help clear that up. We hope this post helps!

#StopRestPace is a campaign created by #MEAction to help our community spread the word to those who were experiencing PEM after COVID-19 to rest and pace their activity.

What is PEM? Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.

Sometimes exertion is misunderstood as exercise. Exercise is simply one form of exertion. Exertion is defined here as anything that stresses or strains the system. Exertion can be physical, orthostatic, sensory, cognitive, emotional, or environmental. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.

Pacing is a self-management strategy for activity. Patients who pace well are active when able and rest when tired. Proper pacing involves building up awareness of the levels of daily activity that do not trigger relapse of symptoms through PEM. While this sounds simple, it is incredibly difficult. Activity management in severe patients can be very challenging since even activities like eating or brushing teeth may lead to a crash. Pacing advice may not always be useful in this population.

#MEAction offers three pacing guides - adult, pediatric, and clinician - on our site. Our pediatric guide was developed in conjunction with Long Covid families. Our clinician's guide was developed with Patient-Led Research. https://www.meaction.net/resource/pacing-and-management-guide

[howlsofbloodhounds]

So I was doing some looking around and researching into possible real life equivalents for Color’s physical condition, such as his fragility to the point of possible death if he overexerts his abilities.

Color’s condition—which is characterized by physical fragility, fatigue, and the potential for severe physical deterioration—has similarities to several real-life conditions that affect energy levels, muscle strength, and overall physical integrity such as:

Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)

Symptoms: Extreme fatigue that doesn’t improve with rest, muscle and joint pain, cognitive difficulties, and post-exertional malaise (worsening of symptoms after physical or mental exertion).

Like Color, individuals with CFS/ME have limited energy reserves and can experience significant physical and cognitive fatigue from overexertion. They need to carefully manage their activity levels to avoid severe consequences.

Osteogenesis Imperfecta (Brittle Bone Disease)

Symptoms: Fragile bones that break easily, muscle weakness, and fatigue.

The physical fragility and risk of cracking or breaking with exertion in Color's body can be likened to the bone fragility in individuals with osteogenesis imperfecta. Managing physical stress and avoiding overexertion is crucial.

Ehlers-Danlos Syndrome (EDS)

Symptoms: Hypermobile joints, skin that bruises easily, chronic pain, and fatigue.

The combination of fragility, easy bruising or tearing (cracking in Color’s case), and chronic fatigue can parallel the experiences of those with EDS, where physical stress can lead to significant issues.

Like individuals with CFS/ME, Color would need to pace his activities, taking frequent breaks and avoiding overexertion to prevent severe fatigue and physical damage. He might need to prioritize his activities, focusing on essential tasks and avoiding unnecessary exertion.

Similar to those with brittle bone disease, Color would need to avoid situations that could physically stress his body and lead to cracking or dusting.

He might use supportive devices or strategies to minimize physical strain, such as ergonomic tools for photography or mobility aids for traveling.

Techniques to manage chronic pain and discomfort, which could include medication, physical therapy, or other interventions. Ensuring adequate nutrition to support his body’s needs and potentially mitigate some of the fatigue and physical issues.

Developing coping mechanisms to handle the emotional stress of his physical condition, possibly through therapy or support groups. Relying on friends like Killer, Epic, Delta, and Beta for emotional support and understanding during difficult times.

Some supportive devices or strategies Color might make use of at his leisure, particularly with matters such as traveling and hiking, he could use things like orthopedic supports, mobility aids, things for pain management, adaptive equipment, assistive technology and more.

He could use braces and splints to support unstable joints and prevent injuries, and/or compression garments to help with joint stability and reduce pain.

Mobility aids such as walking poles or trekking poles to provide stability and reduce impact on joints during hiking. (His walking poles are definitely covered in stickers and drawings from all his friends.)

He could use portable heat and cold packs to help manage pain and inflammation as well as portable massager to relieve muscle tension and pain.

Adaptive equipment such as ergonomic backpacks designed to reduce strain and distribute weight evenly. Adjustable hiking sticks for customization based on height and terrain.

Voice-Activated apps and devices for navigation and reducing the need for physical interaction with devices. Smartphone apps for tracking symptoms, medication, and managing energy levels.

Stress- relief tools like stress balls, fidget toys, or calming apps to help manage PTSD symptoms or overstimulation.

Personal comfort items or sensory aids that provide emotional support during travel or hiking, such as all the evidence and trinkets of his loved ones back home or spiritual/religious items or symbols. Techniques and tools for managing fatigue, like scheduled rest breaks and planning shorter, manageable hikes.

Travel planning apps to help with organizing trips, finding accessible accommodations, and managing health needs.

(And of course this isn’t supposed to be me diagnosing color with anything, or saying what he does or doesn’t have. Mostly just to take some things this character experiences and link it to some real life equivalents, that could potentially help better understand him and what he deals with.)

[iplaywithstring]

Friends, it is ME/CFS awareness month, and I'd appreciate if you watch this Ted talk.

My symptoms first started in 2010, and have ranged from mild to moderate. I've gotten very good at appearing to be healthy, but there have been times in the last 14 years when my symptoms have made it difficult for me to drive, walk, or even speak. I have physical issues (pain, weakness, digestive symptoms), cognitive issues (brain fog, memory and language difficulties) and autonomic issues (temperature regulation, orthoststic intolerance) - just to name a few of the multitude of symptoms people with ME/CFS live with.

I am lucky - I've been able to go to school and to work while managing my symptoms. Over the last decade I have gotten pretty good at managing my activity to keep from crashing, but that does not mean I am well. Just like many other chronic illnesses there are so many factors that can affect how I am feeling and many are beyond my control.

Living with this illness means I do not always get to do the things I would like to do - even if it's fun, important, or seems easy from the perspective of others. Something as simple as standing in a lineup can make me feel ill, and on other days have no effect at all.

There are a lot of people who have had covid 19 and now fit the diagnostic criteria for ME/CFS. A lot of these people will be told they are faking, exaggerating, or being lazy. Unfortunately, sometimes people get sick and do not recover. Sometimes there aren't any clear answers or effective treatments. Having people who show understanding and compassion can make a world of difference, and that starts with education about what having this illness can mean.

[kiiwiigii]

Night-Time Reading

Alec x Fem!Reader

Summary: You are having a rough day managing your POTS/CFS. All you want to do is relax and Alec is there to help.

Warnings:

Fluff! Nothing but tooth rotting fluff.

Word Count: 400+

Requested?: Yes!

So I'm going through a really rough time, I'm disabled (pots and CFS) and my cfs is acting up badly cause school started and I've been so busy I haven't had a break period, constantly walking and running and being busy. now I have a three day weekend so my body is letting myself feel the consequences of pushing myself too far, so I was wondering if I could suggest some comfort? Alec with a mate that either has cfs or just has some symptoms and just him keeping them as comfortable as possible while they're in pain Common symptoms (including the ones I'm going through) - joint pain (I can barely go up stairs and walk -extreme temp fluctuations (really hot to really cold quickly) -brain fog (brain is foggy. I'm too weak to open a bottle of coke so I left it open and while talking I tipped it over and forgot it was open) -migraines/headaches -sore throat -trembling -really tired but can't fall asleep and/or sleeps for a really long time Thank you for listening 🫶🏼 -🦊

A/N: Hey nonny! I am so, so sorry it has taken me this long to write this. Honestly, I was (and still am I suppose) intimidated to write this, simply because these illnesses are not something I am not even remotely familiar with. But I also want to thank you because it's a good writing exercise for me. I'm also sorry that you're having such a rough time. I can't even imagine. So here's a fic, just for you, darling. I hope you're feeling better.

Another A/N: So the wonderful and amazing @alecvolturi did an amazing edit of Alec reading the first bit of The Hobbit. Please give it a listen as you read. It's PERFECT.

Miserable.

I was fucking miserable.

It began just by sitting up. I could feel the migraine building, and I was already in the throws of a hot flash. It didn't help that the pain in my joints was flaring up again.

It was 3 a.m. and I was already this close to crying. I couldn't remember the last time that I had a proper nights sleep. I just wanted one day, one day where I didn't have to be in pain or worry that any movement I made would set off a whole other series of symptoms, all of which almost all of them were painful.

"Darling?" Alec was next to me, his cold hands running over my heated skin, trailing goosebumps behind in his wake.

His hands were a sweet, cool balm on my flushed skin. It gave me a little relief. I leaned into him, enjoying the cold. His lips pressed to my forehead.

"Scale of 1 to 10?"

"7 to 8." I mumbled.

One would think with how long that I've lived with this disease that I would have a high pain tolerance. That couldn't be further from the truth. I could already feel a few tears slipping from beneath my lashes. I just wanted something to make the pain go away.

I whined as Alec disappeared, only to reappear with my meds and a bottle of water a moment later.

"Here, drink." He handed me the pills and water, and I took them gratefully. He pulled the comforter from the floor where I had kicked it off, bundling it back up on the bed for us to lay down on. He then grabbed my phone, pulling up my favorite playlist, the one he made for me to help me calm down when I felt like shit. The music started flowing through the speaker near my bed at a low volume.

"What book, darling?" His eyes were already scanning my bookshelves.

"Uhm…" I blinked back at him slowly, trying to process what he said.

"How about The Hobbit?"

"Perfect." I rasped with a small smile.

He was next to me again in a flash, his back against the headboard as he pulled me gently to him, a pillow already ready in his lap.

"In the hole in the ground, there lived a Hobbit." His voice lilted over me, and I felt myself begin to relax as his hands gently ran through my hair and along my neck.

The fine mist that signaled the use of his gift began to unfurl from his fingers and I felt myself begin to numb. The first time he had done this it had been disconcerting, but now I welcomed it with relish. A small reprieve from the pain. I smiled to myself, letting my eyes slip closed as I listened.

Then finally, sleep came for me.

{Masterlist} // {Request Guidelines}

Taglist: @alecvolturi @lack-lust-3r @rosedpetal

Wanna be notified when I post a new fic? Ask to join my taglist!

[compassionmattersmost]

Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

A Gentle Reflection on Pacing, Rest, and Navigating the Challenges of Chronic Fatigue Syndrome There are days when the body speaks softly, a whisper of weariness that hints at the storm ahead. And though we move carefully, mindful of each step, there are moments when the smallest effort—a turn of the mind, a spark of emotion—awakens something deeper. This is the dance with post-exertional…

[mysadcorner]

Hello! Just wanted to start by saying thanks for your amazing writing and sharing with all of us! If it’s not too much trouble, could I request headcanons for Jason Todd with a significant other who has chronic pain? Personally I’ve got endometriosis (it’s a rude little thing) and that causes quite bad pain, so I’m being a bit self indulgent here. Thank you very much if you manage to get around to it! ♥️

Jason Todd x ChronicPain!Reader Headcanons

-Credit to the gifs owner - Please be specific about characters wanted in headcanons -

Masterlist Navigation

I personally suffer from CFS/ME which also comes with frequent pain all across my body (as well as many other symptoms) so it was nice to get a request like this. Thank you! :)

Jason's first reaction to you having chronic pain would be instant sympathy, but he wouldn't want you to think that he feels any less of you. Jason just wants you to know that he wants to help as best as he can while also feeling bad about the situation you're in but can't change.

He would do his best to try to figure out what you need, whether that be lifestyle changes that you may need help with or just simple things that you go through everyday. He doesn't mind helping you out and will be more than happy to provide the things you need once he's figured out what would help you best.

He would also accommodate to you through things in his own life just because he cares about you so much, and he'd never want you to feel bad about these changes as he's doing them willingly. He would even change his schedule around completely for you if you needed it, just so that he can be with you during specific times that your chronic pain may take place, or need help getting places due to the pain causing you issues.

Jason and his family know a lot of people, especially those who are well qualified. Because of this he'll go out of his way to ask around as to what may help you even more, or asking about certain methods that could make things easier for you, and he'd prefer to do this than just listen to your doctor without looking any further for information as even he knows that a single doctor can be dismissive over problems or simply wrong about things a lot of the time.

If your chronic pain was impacting you a lot more than usual he'll take some time or even a few weeks off from his everyday activities so that he can look after you full-time until you're able to do some things on your own again, although he may need to leave during the night so that he can continue protecting Gotham. He doesn't mind doing this and would prefer if you're honest about when you're struggling so that he can make sure you're as well as you can be in the long-term.

If you're ever feeling anxious, or just simply want company, to appointments, then Jason will go with you and will be more than happy to do so. Not only does this make you both feel better about whatever nerves you're having, but seeing how your appointments go gives him a better idea of how your condition works and affects you in depth which then enables him to aid you better or give you reassurance about certain things.

Jason is distraught on the inside when he sees you suffering from your chronic pain, but he'll try his best to not let you see. He'll spend his time trying to look strong for you so that neither of you get emotional about it and you continue to feel supported by him. He will open up to you about how he was feeling in that moment a while later once the pain has decreased (if it does) so that he's still being honest with you but strong in the moments you really need him.

Constantly being stocked up so he can look after you - Jason is constantly checking how stocked up he is on pain medication for you, mainly since he regularly buys some for himself just in case he's ever injured while out as Red Hood. This makes things a lot easier for you since they're always ready to be used and you don't need to worry about not being able to go out and get it for yourself when you're pain is severe. Plus, this makes him calmer knowing that if he's ever not there you have something to minimise the pain by yourself rather than suffering until he's able to help if you feel comfortable letting him.

[m-e-and-more]

Not all #LongCovid is #myalgicEncephalomyelitis.

While its super important to raise awareness of the simularities of the #millionsMissing with #MECFS and #millionsMore with #LongC it is also essential to recognize that only a subset of #covid #longhaulers meet the criteria for a diagnosis of ME.

ME aka #ChronicFatigueSydnrome is not the same as #chronicFatigue. The defining symptom of ME / #CFS is #PostExertionalMalaise or an exhasurabtion of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.

When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.

When you are talking about long covid patients be clear that only the subset with PEM have MECFS.

It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA approved treatments for ME, many commorbidities do have effective medication options. Management of ME must also be tailored based on a patients commorbidities.

Patients with MECFS and post viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.

Long covid patients who experience PEM should be advised to #StopRestPace and informed about the importance of pacing agressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)

Because long covid is a broad category that encompasses patients MECFS #MCAS #fibromyalgia #POTS #dysautonomia #autoimmune and #autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.

MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that #covidLonghaulers will #LearnFromME and ally with us to end #postViralIlness

[mrs-snape5984]

“There is more to love than this. Love is more than just a kiss…”

“And will you, bring the thunder in my life and the fire in my eyes? ‘Cause then, there will be days of pleasure and everything far will be so near…” (“Ich kenne nichts” by Xavier Naidoo feat. RZA)

Struggling with several diseases and disabilities, especially since I’m being tortured by the countless symptoms of this goddamn bitch sickness ME/CFS, made me lose my self-esteem and my self-confidence. For the past two years, I was convinced, that the pain as well as my supposedly unstoppable physical and mental decay have taken a toll on my personality. The bold, strong and self-reliant woman and mother, I’ve been before, was gone.

Well, at least, that’s what I thought! Some months ago, I discovered that this woman had not disappeared. On the contrary, she’s still living inside my soul…stubbornly raging at my condition and the confines of my body…and yet, she’s full of hope for better days.

I must admit, that I had some help with this insight. There are friends in my life, who managed to encourage me opening my eyes to see, what’s laying beneath the weak shell of my body. And I found something else. I found love! An unconditional, honest love, which makes me feel so grateful for being alive, no matter how this life might look like, at the moment.

I’ve always fought with intrusive thoughts and self-loathing…but since I am allowed to see myself through the eyes of this special person, there’s something awakening in me, which I’ve never experienced before: Self-acceptance. Slowly but surely, I’m beginning to accept, that I don’t need to be a perfectly shaped, beautiful, studious and healthy woman to be loveable. It seems as if even I - with all my flaws, my traumas, my vulnerabilities and my fears - am worthy of being loved. I couldn’t be more blessed with this realisation…and with the fact, that this special person welcomes my love with open arms in return.

For this breathtaking artwork of Severus and my - undeniably self-inserted - OC Jules I’ve commissioned my friend @hannisimp. Lin, my dear, you’ve done an amazing job with the fulfilment of my ideas. Witnessing Severus and Jules in this intimate and trustful situation makes my heart melt into a puddle. The exchange of their glances is so powerful, so touching…and despite their flaws, there’s a certain knowledge palpable between them: “Ich kenne nichts, das so schön ist wie du!” (= i don't know anything as beautiful as you).

Thank you for making my dream come true in your art, Lin! You’re an incredibly talented artist and a wonderful person. Feel hugged, my dear! 🫂🖤

🖤Severus & Julia🖤

🖤Sevy & Jules🖤

[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;