#ME/CFS exercise routine
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compassionmattersmost · 7 months ago
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9: Listening to Your Body: A Compassionate Approach to the Leg Press for Post-Viral ME/CFS
When living with Post-Viral ME/CFS, it’s essential to remind ourselves that our journey with exercise is not measured by how much we do, but by how gently we honor the unique rhythms of our bodies. This is especially true when it comes to engaging in physical activities like the Leg Press Machine. Today, we’ll explore how to mindfully approach this exercise in a way that supports both your…
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potssucks · 2 years ago
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Exercise
focused walking/exercise bike 👍30 minutes in one go
🫱 30 minutes 15 minute increments, breaks as needed
👎 20 minutes 5 minute increments, at LEAST one hour between each
plank/pushups/situps
👍 2x 30 sec plank, 10 wall pushups, 5 situps
🫱 1x 30 sec plank, 5 wall pushups
👎 5 wall pushups
heel raises/glute bridge
👍 20 glute bridge, 30 heel raises
🫱 10 glute bridge, 20 heel raises
👎 5 glute bridge
tai chi OR yoga
👍 20 mins tai chi/yoga
🫱 10 min tai chi/yoga
👎 1 exercise tai chi/yoga
stretches (do what I can)
hammy
quad *
calf
hip
back *
shoulders
traps
neck
*Be careful, fainting trigger
Remember: epsom salts bath for 30 min is ur friend
NONE OF THESE are to be completed all at once. TAKE BREAKS. ESSENTIAL. DOING THESE ALL AT ONCE IS A BAD IDEA AND WILL FUCK U UP.
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prismscape · 5 months ago
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May i please have trans ME/cfs tips? Maybe even permasleepy or permadrowsy if you're comfortable/able. TYSM!
It's hard to find good transid tip accs tbh. I like yours!
Hey, yes of course! I’m glad you like mine! :D
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TransCFS/ME
Insomnia
A lot of people with CFS / ME have insomnia or difficulties sleeping at night.
Sleeping less can make you feel very fatigued and sleepy during the day.
Eating something right after going to bed can also cause you to sleep less and feel more fatigued.
Being on your phone in bed right after going to sleep can also cause you to be very tired but unable to sleep.
Not exercising / moving enough can also cause sleeplessness.
Fatigue / Tiredness / Exhaustion
Try your best to stop drinking energy drinks or caffeine since they cause you to get energy and not be tired.
Lack of physical activity is one of the main causes of fatigue. Try limiting how much sports you do or how much you exercise.
Eating poorly like eating a lot of fast food or eating less than 3 meals per day can cause tiredness.
Drinking less than 2 Liters per day can cause exhaustion after physical activity.
Permasleepy
Avoid caffeine and energy drinks as good as you can, they make you awake.
Have a bad sleep routine and stay awake longer at night.
Believe it or not, some breathing exercises can actually make you feel sleepier during the day.
Try doing the same tips as the ones I listed in the fatigue / tiredness / exhaustion section of transCFS
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Remember, you are valid <3
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she-is-ovarit · 2 years ago
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It's been over 10 years, but one of the most motivational things I have heard was during high school. My friend had mentioned he just began working out. I said something along the lines of, "I always think about working out but it takes awhile for anything to actually happen."
And he very simply responded with, "Why? I feel it physically right now and it's been three days."
I don't know why that was so perspective-shifting to me but I think of him whenever I'm done working out now.
It's because of that small exchange that on days where I severely lack motivation or am edging into or just out of a CFS/ME episode I still just show up at the gym just to physically be in that space even if I don't exercise. I feel the effect of just existing in that space in gym clothes and continuing the routine of being present there. I stay 5 minutes and listen to a song or part of a podcast and leave. Sometimes I just stretch and leave. Sometimes, if it's just an unmotivating day and I am not in a PEM episode and am physiologically able to exercise, it becomes me getting hyped and I surprise myself by being there for 45 minutes.
The goal for me is often to just be present. Sometimes I meet it. Sometimes I'm not physically able to achieve that goal and the goal becomes respecting my physical limits. I might not be able to get out of bed to even change clothes. That is part of the process, there is a limit that I don't exceed. I take it easy. Other times I exceed the goal of just showing up and do more. All because my way too honest autistic buddy in high school challenged my thinking by pointing out you can feel the effects and influences immediately, and I applied that not just to exercise itself but the process that supports it to occur either right then or in the future.
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solacescastleglow · 4 months ago
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How I Levelled Up My Life with ME/CFS: A Hyperspecific Guide for Absolutely No-one
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***DISCLAIMER*** This won't work for many people. In no way am I saying to do what I did and all your problems will be solved. If anything, this is a message to ablebodied people that people with chronic illnesses have to work so much harder to get to the point that they get to start from.
I have deliberately kept quiet about my illnesses on this blog; it just seems 'un-aesthetic'. But then I realised how much my self improvement has been impacted by my illnesses, and how so much of my levelling up seems small and basic if you don't know about my health history. So, here it is. I have h-EDS (and everything that comes with it) and ME/CFS, and this is how I went from a 1-2 to a 5-6 on this quality of life scale by the American Chronic Pain Association.
Medication
Wait for the miracle drug and take it
For me, it was Dr. Marco Leitzke's Nicotine Test. I started using nicotine patches in February of 2024, 10 years after my disease onset, with immediate positive effects. This singlehandedly took me from housebound, in bed for 18 hours a day and crashing if I took a shower more than twice a week, to being able to cook, exercise lightly, and leave the house all in one day without major consequences. I cannot emphasise enough how much of a game changer this was for me. It doesn't work on everyone, but for some people it does, and I was lucky to be one of those people.
Get your mental health in check
I am on a combination of sertraline and aripiprazole for my OCD and mood disorder. This has made the mental load of existing much lighter, giving me more ability to think about things in a healthy way.
Movement
Moving countries/back in with my parents
While the majority of this section is about physical movement, I wanted to take a second and say that moving into a place where I have support from my parents, and also a 15 minute neighbourhood with lots of stuff going on and people being supportive and accepting, has changed a lot about me. For the better.
Somatic healing
I have a lot of trauma, from illness and other things, and all that trauma was making me sicker. Talk therapy helped me immensely, and now I'm working on somatic healing techniques to release more of that. Every thing I manage to let go of, the better my health gets. And that's not even an affirmation, that's a genuine fact.
Exercise
I know, I know. Every chronically ill person has been told to try yoga. I didn't do it for the longest time, but after getting my meds sorted out, I could finally try it without devastating consequences. And, unfortunately for my stubborn self, it worked. My theory is that yoga does help, but only if you have the capacity to do it. I've now moved on to weight training, pilates, and calisthenics, and I can rock climb and play badminton again. It's truly a beautiful thing to be able to move your body with joy.
The mental load of being a wheelchair user
It gets exhausting always being on, always supporting my core, always needing to check to make sure I'm not about to roll off a curb or bump into things. To add to that, my neighbourhood isn't the most accessible. Eventually, I got to a point strength-wise where using platform crutches took up less energy than a wheelchair. Now, I reserve my chair for longer trips I know I wouldn't make standing up.
Mindset
Playing catch up
Because my recovery was so quick, my brain still hasn't really caught up to the fact that I can do things. A lot of what I'm focussing on at the moment is based on allowing myself to leave the house, and getting into self care routines that are more in line with an ablebodied person's. There was a level of dirt that I just accepted in my life and on my body, because I knew I didn't have the energy to do anything about it. Now, I'm changing my standards, which is hard.
Self concept
The thing with self concept work is that you need proof. Proof that it's working, proof that you're not just lying to yourself. And to get that you need wins, no matter how small. Before I started nicotine patches, there was no way to do it, because any 'wins' were followed by debilitating illness. But now that I have that proof, I'm getting so much stronger, and I'm starting to identify less as 'chronically ill' and more as 'recovering from chronic illness'. I will always be disabled, but I now view myself as someone other than the sick kid, which I was stuck in for a long time.
Just start
Last year, I decided to just start complimenting strangers on the street. It was something I'd always been too scared to do, but I did it anyway, and even though it was just as scary as I thought it would be, I did it again. And again. And now I've made a friend (my only friend in almost 7 years) because of it! It's really scary, but sometimes you just have to get over the fear and do it anyway.
More
Whole foods and eating
I have no idea if the reverse is true, but my diet improved drastically because my health did. There was nothing morally wrong with the way I was eating before, but I eat more consistently and with more fresh ingredients now, which has made my stomach feel less heavy and greasy. If you want advice: get a pressure cooker, an air fryer, and the book Crip Up the Kitchen. In addition I'd suggest a food chopper of some kind, or living with someone who's willing to do the chopping.
Medical transition
With all of this, I've hit a ceiling in how much better my life can get. I'm genuinely over the moon to be at the point where the main thing holding me back is dysphoria, and I now live in a place where that can be treated. This is the next thing on my list, and I'm so excited!
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the-terminal-show · 9 months ago
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Ok after reading a bunch of recent LongCvid medical studies & people's experiences on forums i'm 96% sure it's LC ME/CFS.. the symptoms started showing in people within 8-14 months post first infection just like mine.
Spontaneous frontal cortex swelling explains my fucky bulging right eye / socket & head pain, and when I suddenly began reading/writing 10k+ words a day it set off the ME over and over on top of when i could still walk 2+ miles daily. After that it just compounded because I never stopped, AND started drinking again.
Now slightly swollen neck & arm lymph nodes are another common symptom.. Half the time my expressive vocabulary drops into brain-dead 12yo ranges and I start writing like a moron- possibly like right now my eloquence has flatlined. Then suddenly my brain works again a few days later, but that's only gotten worse the last 3 months. My photographic memory is crippled, even doing my routine breathing exercises where i count visually with 3D numerals made of various chemicals / gems / organic matter- whatever feels like a strain and dreaming makes my head feel like it's gonna pop by time I wake up.
Mystery solved, but i'm capital F ucked
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aposbook-12 · 1 year ago
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How to reduce fatigue and boost energy naturally
What is Chronic Fatigue
Chronic fatigue is a condition characterized by persistent, long-term fatigue that is not relieved by rest and cannot be explained by any underlying medical condition. While medical evaluation is essential, natural cures for fatigue can also play a role in managing fatigue. Reducing stress levels, finding the right work-life balance, improving your diet, and resting properly are some effective ways to combat fatigue naturally.
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Chronic Fatigue Causes
Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a complex condition. Its causes are not fully understood yet and can be due to a single reason sometimes, or alternatively, can be the result of a combination of factors leading to fatigue. 
Some of the possible causes of chronic fatigue might include:
- Viral infections: Some research suggests that CFS may be triggered by a viral infection, such as Epstein-Barr virus (EBV), human herpes virus-6 (HHV-6), or Coxsackie B virus.
- Immune system dysfunction: CFS may be related to an abnormal response of the immune system, leading to inflammation and cellular stress.
- Hormonal imbalances: Disruptions in the levels of hormones such as cortisol and thyroid hormones can cause fatigue.
- Nutrient deficiencies: Lack of essential vitamins and minerals can cause fatigue.
- Psychological stress: Chronic stress can cause fatigue.
- Sleep disorders: Sleep disorders such as insomnia can lead to fatigue.
- Other medical conditions: Some medical conditions such as anemia, diabetes, and thyroid disorders can cause fatigue.
It's always recommended to consult with a doctor to determine the underlying cause of your chronic fatigue in order to develop an appropriate treatment plan.
Natural Treatments for Chronic Fatigue
There can be several treatments to reduce fatigue and boost energy. Below is a list of some of the most common ones.
You can also click on natural treatments for fatigue to find a detailed list of all the natural solutions, including various natural therapies, diet programs, alternative medicine, vitamins, supplements, herbal medicine, and home remedies. 
You can also go to www.aposbook.com to find all natural treatments for any medical condition IN ONE CLICK.
Natura solutions to reduce fatigue might include:
Diet and Nutrition:
Balanced Diet: Consuming a well-balanced diet is crucial. Focus on whole foods such as fruits, vegetables, whole grains, lean proteins, and healthy fats. Avoid processed foods, excessive caffeine, and sugary snacks.
Essential Nutrients: Ensure adequate intake of essential vitamins and minerals. Vitamin B12, iron, and magnesium play a key role in energy production and overall health.
Exercise:
Gradual Approach: Regular exercise can improve energy levels, reduce stress, and enhance sleep quality. Start with light exercises and gradually increase intensity and duration.
Low-Impact Options: Consider activities like walking, swimming, or gentle yoga.
Sleep Hygiene:
Consistent Sleep Schedule: Establish a regular sleep routine. Go to bed and wake up at the same time each day.
Create a Relaxing Environment: Keep your bedroom dark, quiet, and cool. Avoid screens before bedtime.
Stress Management:
Mindfulness Techniques: Practice meditation, deep breathing, or progressive muscle relaxation to manage stress.
Yoga and Tai Chi: These mind-body practices can help reduce stress and improve overall well-being.
Herbs and Supplements:
Ginseng: Ginseng is believed to boost energy and enhance vitality.
Ashwagandha: An adaptogenic herb that may help reduce fatigue and improve resilience to stress.
Rhodiola: Known for its potential to increase stamina and combat fatigue.
Co-enzyme Q10: A supplement that supports cellular energy production.
Magnesium: Essential for muscle function and energy metabolism.
Acupuncture:
Alternative Therapy: Acupuncture involves inserting thin needles into specific points on the body. Some people find it helpful for reducing fatigue and promoting overall wellness.
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universal-shapers · 2 years ago
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The Role of Cortical Release in Chronic Fatigue Syndrome
Cortical release refers to a set of therapeutic practices and exercises aimed at reducing tension and promoting relaxation within the central nervous system. These techniques involve various mindfulness-based strategies, meditation, deep breathing exercises, and progressive muscle relaxation, among others. The goal of cortical release drills is to alleviate the overactive and hyperaroused state of the nervous system often observed in individuals with CFS.
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Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a complex and debilitating condition characterized by persistent and unexplained fatigue, often accompanied by a range of other symptoms such as pain, cognitive difficulties, and sleep disturbances. While the exact cause of CFS remains unclear, research into its underlying mechanisms has revealed a potential link between cortical release and symptom management.
Several studies and anecdotal evidence suggest that the chronic stress and overactivation of the sympathetic nervous system seen in CFS patients may exacerbate their symptoms. Cortical release drills can help mitigate this overactivity by promoting a shift toward parasympathetic dominance, which is associated with relaxation, reduced stress, and improved recovery.
Here are some key points to consider regarding the role of cortical release in CFS:
Stress Reduction
Cortical release techniques are effective in reducing stress and anxiety levels. Stress can exacerbate CFS symptoms, so incorporating relaxation practices into a patient's routine may help alleviate their condition.
Improved Sleep
Many individuals with CFS struggle with sleep disturbances. Cortical release drills can enhance sleep quality by calming the nervous system and promoting restful sleep.
Enhanced Cognitive Function
Cognitive difficulties are a hallmark of CFS. Mindfulness-based cortical release practices can improve cognitive function by reducing brain fog and enhancing mental clarity.
Pain Management
Chronic pain is often associated with CFS. While cortical release may not directly alleviate pain, it can help patients manage their discomfort by reducing the stress response, which can exacerbate pain perception.
Holistic Approach
Cortical release is part of a holistic approach to managing CFS. Combining these practices with other strategies such as graded exercise therapy, pacing, and dietary modifications can lead to more comprehensive symptom management.
Individualized Care
It's essential to recognize that CFS is a highly individualized condition. What works for one patient may not work for another. Tailoring cortical release drills to each patient's specific needs and preferences is crucial for success.
In conclusion, while there is no cure for Chronic Fatigue Syndrome, cortical release drills offer a promising avenue for symptom management.
 By addressing the role of the nervous system and promoting relaxation, these techniques can contribute to an improved quality of life for individuals living with CFS. However, it's important that patients consult with healthcare professionals who are knowledgeable about CFS to develop a personalized treatment plan that includes cortical release as part of a multifaceted approach to managing this challenging condition.
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compassionmattersmost · 2 months ago
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Introducing the ME/CFS Wellness Companion (A Work in Progress)
For those living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Long COVID, or any energy-limiting illness, daily life can feel like an obstacle course without a map. Simple tasks become monumental. Rest becomes survival. And advice from the outside world often misses the mark entirely. In response to this, I’ve been quietly building something—a digital companion rooted not…
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People probably aren't going to like this one but as someone who has both depression and CFS people saying "oh I have that because of my depression!" when I tell them about my CFS rubs me the wrong way for a few reasons:
People with CFS are constantly blown off as having depression or burnout. One of the (ableist) nicknames for CFS is literally "yuppie (a mocking term for young businesspeople) flu". You might think "well the only reason that would be a problem is if you don't believe depression is as disabling as CFS", but that's not true. An incorrect diagnosis of depression can lead to incorrect treatment and worsening of our condition. There's also the issue that treatment for CFS is horribly underfunded and we get even less attention when people assume our issues are already covered under depression or another mental condition.
CFS has symptoms other than just being fatigued. Dysautonomia symptoms like POTS/gastroparesis, brain fog, post-exertional malaise, chronic pain, difficulty sleeping, dizziness, and a host of other symptoms make up the condition. A lot of people hear "chronic fatigue syndrome" and think it just means "fatigue that lasts a long time", and you're forgiven for thinking that given its shitty name, that's why we're trying to get the name of the condition changed. Until then, please treat it like many other horribly named conditions and do research before assuming you have it based on the name.
If you're depressed, exercise is good. A big step in depression recovery is being able to get an exercise routine going to help release happy chemicals that help treat the depression. This is not true of CFS. Exercise will cause a person with CFS to become significantly worse, to the point of losing their job, needing a wheelchair, or becoming bedbound, depending on their current energy levels. Incorrectly identifying CFS fatigue as depression fatigue can be devastating. I should know, I did it at first. I'm confident that if I had identified what was wrong with me in the first month I was sick I wouldn't have needed the $4,000 wheelchair and expensive CFS treatment I have now.
In summary, depression can cause fatigue, but not chronic fatigue syndrome. Being told we're "just depressed" is a huge problem for CFS patients and a barrier to our treatments, so we might be annoyed or even standoffish towards depressed people who try to empathize with us. It's not because we hate you, many if not most of us are also depressed, but because "that's just depression" is often followed by "and you're dramatic and attention-seeking for needing the aids that you need/'not trying' to get better".
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cfdfitness · 3 years ago
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“Okay, but what are you actually doing for fitness?”
As a disabled person who is not a fitness instructor, it’s hard for me to actually blog about tips on exercising - a lot of it just isn’t designed for me. Another thing is that unless the person describing the routine to me has also dealt with CFS, I need to take their advice with a grain of salt and also wildly dial down the intensity - intense workouts are not safe for people with CFS/ME/SEID, and this means for people with Long COVID or Long Lyme or anything like that too. Exertion of that kind can cause crashes that last several days, weeks, or months at worst. If you have any form of chronic illness, I heavily recommend that you take whatever workout you’re doing and dial down the intensity a lot - only doing a couple of reps at a time, etc. Your workout should feel like it’s too easy. I’m serious.
There is, as far as I can tell, only really one person in the topmost Youtube search results potentially worth listening to in regards to CFS/ME and fitness - a lot of the rest of it seemed like it was overly spiritualistic or based on unclear science. (There were even claims that psychology or retraining your brain could somehow fix CFS... Youtube, do better! It’s a physical post-viral condition!!!)
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Raelan Agle is self-described as someone who has recovered from CFS and is the primary person I could find making any videos in regards to exercise with CFS/ME/SEID. She also just talks about CFS and her personal journey with recovering from/minimizing symptoms from it in general. I’m personally going to be looking into her videos more in the future and seeing what I can take from them for my own life. However, a word of caution - she seems to have bought into things like juice cleansing/clean eating, and while if that helps her, that’s wonderful, I worry about the safety of recommending practices like that to others. That type of “wellness” industry thing contributes to a lot of bad, like eating disorders and even cults. So be careful.
I’m a wheelchair user, so wheelchair exercise or seated exercise (I do have control of my legs, I can technically ambulate on my tip toes) is critical to me. Luckily that’s not too hard to find. Much easier than good tangible advice for people with postviral illness, anyway. A little bit of searching on Youtube before I started this blog, and I found Paul Eugene’s channel.
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He does a number of videos designed for seated exercise, low impact exercise, and other forms of exercise for older or disabled people in a variety of settings for a variety of purposes. He’s not a wheelchair user himself, and he does advertise some of the exercise as ‘fat burning’, but the commitment to accessible workout information is appreciated and very helpful. Some of the videos are set to gospel music but most aren’t.
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Another channel is Adapt To Perform, which is actually run by a wheelchair user! He does a number of live streams, reels, and other things like that. Not really my preferred format, but it seems incredibly helpful to anyone in a wheelchair. In any case, if you have a disability, an injury, or a postviral illness like I do, be sure to be very careful and know your own limits before attempting any kind of workout or exercise!
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mathsbian · 10 months ago
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Every time I try to add just 15 minutes of yoga a couple times a week to my routine, I end up so wiped for days that I fall behind on the few chores I can manage to keep up with and spend the rest of the week trying to catch up and never getting a second session in. Every single time, it becomes a war against my pain to just keep my routine as it was for the rest of the week.
I don’t know what else I can try to do that would be even easier on my body than yoga. And it’s not like I can’t tell I’m getting weaker and having more and more issues with my joints and shit. I know that exercise would help rebuild muscle strength which in turn would fix some of the problems with my joints (my knees specifically I believe are under too much tension from my lower leg muscles because my thighs have gotten weaker), but I literally don’t have the energy or the stamina or whatever else necessary to work out regularly. All it does for the moment is sap all my energy, increase my pain, and leave me scrambling to do the things I have to do each week.
It’s one of the reasons I’m so suspicious that I have long Covid, which causes the same mitochondrial damage as seen in ME/CFS and is potentially the root cause of the chronic fatigue associated with these illnesses. It definitely feels like it’s my entire body not getting the energy it needs to do anything.
I do genuinely think if someone tells me that I just need to be more active to help my chronic pain one more time I will lose my shit
Bro I work out at least 3 times a week in addition to my regular daily activity. Lemme tell you, I’m always in more pain the days after I workout.
The issue is not my activity level. The issue is the chronic disorder. Please get it through your head.
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worldsover · 4 years ago
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Fermata ft. Chuu
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You write to keep your concentration and disconnect you from your ever-changing concerns. For all your ideas, the true crux of putting a piece together is actually making something concrete. The self-control you require to be consistent, and consistently creative, is what makes music so hard to stay focused on. This album must be finished. This year. No written promises but you have to do right by her after all you've invested. You fucked Jiwoo in the mouth yesterday. Real right of you to do.
“Coming!” Jiwoo must be far from the front door with how her holler resounds the apartment. Where do you put your hands? Pockets are natural though they don't feel like it. Many but not enough footsteps grow in loudness but you expect a stampede anyway when the door opens. Instead, only Yerim and Sooyoung manifest in the opening hallway.
“Hello, oppa! Jiwoo unnie is just… Umm. Taking care of business.” Yerim playfully elbows you when she pulls you in but you stop her to take your shoes off. Sooyoung sends a brusque wave your way and not much else as she collects assorted effects and clothing around the living room. There isn’t nearly as much noise as you expect.
Look around in confusion. “Did I miss something? Is today a holiday?”
“Jiwoo isn’t the only one who’s got schedules, PD-nim,” Sooyoung says.
Yerim turns around. She also has some nicer pants on, and a loose-fitting red top. “Unnie, you’re just visiting your family.”
“And that’s a schedule.”
“Well oppa, I have a CF to film so, ha!” Yerim raises a hand, victorious she just won the conversation. High five. She’s satisfied but Sooyoung gives no regard, clearly looking for something.
“What about the other girls?” you ask.
“I’m not a manager. Just count yourself lucky the dorm is so empty.” Yerim says.
“Damn, we can even record some demos too. Good thing I brought the mic. Hold on, before you guys go, wanna listen to some of our songs?” you say.
“Finally!” Yerim says.
“Just play it out loud, I can hear it,” Sooyoung says. You offer your help with whatever she’s searching for though she brushes you off and insists she can do it herself.
Yerim brings out a bluetooth speaker from underneath the living room couch and coughs because of whatever dust she just procured.
Pull out your Macbook from your backpack and connect it to the speaker. You think about which track to play and pick the one that shows off Jiwoo’s voice the best so far, Jiwoo - Deeper.
Yerim immediately gets into the beat, bobbing her head and dancing. However, when the chorus hits, her ears perk up and she starts cheering at the notes that Jiwoo belts. Sooyoung also turns an ear towards the speaker in curiosity.
A vacuum interrupts the music. Jiwoo swoops in with the machine, scurrying her shapely legs with no heed to their bareness. She pushes up her fake circle glasses and says over the commotion, “I knew you needed this! Oppa, hello!”
“I’m trying to listen to the music here!” Yerim covers her ears.
Sooyoung looks down and pauses at the edge of the couch. “Oh hey, there’s my bracelet! Really nice music by the way!”
“Wow, you guys are so kind.” Jiwoo says, her voice piercing the screaming vacuum without effort. She turns it off realizing she's the only one can really do so. “You still like the music now?”
“No unnie, I mean it,” Yerim says.
“Why are you wearing just that big tracksuit sweater? Do you even have shorts on?” you interrupt the gushing. Jiwoo turns around and hugs herself as if she dropped a towel, even though her immodesty comes from her lower body. Good thing no one notices her sweater ride up for a moment to reveal white panties. Sooyoung looks at you confused while Yerim smirks to match yours. She wasn't even looking at Jiwoo but she could probably tell from your face. Damn, she’s too perceptive.
“Well, it looks like that’s my cue to go,” Yerim says.
“I’m so confused,” Sooyoung looks back and forth at you and the other two girls in the room. You shrug your shoulders, pretending to take solace in her ignorance of the situation.
“Come on unnie, we’ll go together. I’ll go out to get money and you go out to get your kisses from mommy and daddy.” Somehow that didn’t sound too offensive but Sooyoung punches Yerim anyway.
“Oppa, can you finish vacuuming for me?” You’re about to make a retort about labor laws but Jiwoo runs to the bathroom and immediately you hear Jiwoo practicing melodic runs. They’re definitely not the ones you taught her, unless moaning was part of the routine.
“So she has to get her vocal cords ready too huh? I’m suuure that’s all she’s doing in there.” Yerim keeps poking at your bicep with two fingers. You turn on the vacuum to try and hide her overt naughtiness but Yerim’s devilish look tells enough. For full measure, she winks at you as she drags Sooyoung out of the dorm. Mental note to deal with that can of worms for later.
Head to the big bedroom where Jiwoo’s still doing vocal exercises. Three bunk beds line the walls while pillows, blankets and bean bags litter the floor. As the centrepiece of the room sits a simple wooden table, short enough to rest on the polystyrene filled chairs while adequately comfortable to get work done. She stands proud on top of the table as she practices the actual runs you tell her to do.
“Oh, oh, ohhhhh, oh, ohhhhppa!” She jumps down from the table and nearly tackles you when she locks her legs around you in a hug. Take a second to balance yourself while holding her as tightly as possible.
“Jiwoo, you’re eager today.”
“Of course I am, oppa. I’m soooo excited to. Record. Of course.”
“Well if you are, please get off of me.”
“Oppa! You don’t like my hugs?” she says nearly falsetto. Her aegyo throws you off, so you throw her off. Onto a bean bag. “I guess that’s a no.”
“No, not no. I mean. We have to be focused, Jiwoo. Is there any rope or anything?”
“You just said we have to be focused, oppa.”
You wave your hands in denial. “What’d I say about acoustics?”
“Ohhh, like the foam at the studio?”
“Exactly. Especially with how big this room is, we’re going to have to need all the insulation we can get. Ahhh!” Your random shout rumbles throughout the room and startles the relaxing Jiwoo. 
She stands up. “I get it! Geez.”
“Oh yeah, I need a pop filter too.”
“A thin fabric right? For all the p-p-plosives.”
“Mhm.”
Inevitable. Jiwoo takes off her panties and you shake your head laughing in disapproval.
“Come on now, that’s just not sanitary,” you say.
“So you’re saying you don’t want them?”
“No, I’ll just confiscate them for your stupidity. Tsk. Find some pantyhose.“ She gets up. “Ahem. Not used.”
The panties have a tiny wet spot, and your nose takes a quick bask in its musk but Jiwoo immediately catches you.
“And I’m too horny,” Jiwoo says with characteristic sass. You put it in your pocket as she gets pantyhose from her drawer. After fashioning a stand for the pantyhose for her to sing into, you both get to work hanging up blankets from the bunk beds while clotheslines become pillow-lines. A makeshift room within a room, still centered by the table but now surrounding you with cushioning cloth instead of acoustically reflective drywall.
Barely enough space for jumping jacks but you start doing them anyway and it flummoxes Jiwoo for a moment. You don’t need to tell her to join in. Sit down to play an instrumental from the laptop and she pauses the exercise before you motion for her to continue. 
“I need you with the right energy for the beat.”
“Yeah, I figured. Synthwave is really popular now, huh?” Her bouncing to the rhythm rides her hoodie up again but now her cute slit and bare legs are plain to see. Your tongue dries your lips. She catches her breath before stretching one last time. Keep it together. “So are we recording?” 
You nod. Take out the microphone and two pairs of in ear monitors for listening, and connect all the devices to the computer. After setting everything up, Jiwoo gets up and you hold the microphone and filter for her.
Click. “Aaand, recording.”
Click. “One more.”
But that’s it. Two takes. You could not get a better sounding Jiwoo than that. Not a quick demo but the actual release vocal track, since even in such an imperfect recording environment, it sounds perfect to your ears. A little frustration since where was this Jiwoo in all the previous sessions? Maybe you’ll have to consider more visits for recording though you’re not sure if you could make another miracle happen to have everyone else out of the dorm at the same time.
“Jiwoo, that was a- Dammit, that was perfect,” you say.
“Of course, it was!” Not that there’s much room in the improvised recording studio but she ensures you feel even less of it when she gets closer. “Sooo. Wanna fuck my face?”
“That’s not the arrangement! You didn’t mess up.” 
“You definitely sound disappointed I did a good job,” Jiwoo says.
”Of course I’m not disappointed.” You sigh. Are we doing this again? A single flitter of her brows. “I’m not going to fuck your face this time, okay? You have to be able to take that dick all the way down yourself.”
No protests. She lowers her head once in gratitude. 
"Thank you for the meal!" Jiwoo says as she shows off her pearly whites in a big smile. She turns her head up to look at you lovingly as she cups your balls with her hands before she lowers her head again for a precursory smooch onto your cock. This time, she gives the same slow care to your shaft with her lips as she is to your balls with her hands. As if she wasn't going to ruin her makeup.
Restraining your panting and cries of ecstasy is arduous enough with Jiwoo engulfing you when-
“Kim Jiwoo!” Sooyoung’s voice reverberates from maybe the living room or the foyer.
Jiwoo side-eyes the study door. Her head does not stop its seesaw. Is this girl so entranced by your cock that she feels not an ounce of dread?
Sooyoung yells, “I forgot something! Just wanted to let you know I’ll be back later with dinner!”
“Okay! Thanks! We’re busy,” you choke on your words as Jiwoo does the same on your dick, “Uh, listening to the mix!”
Sooyoung, still shouting, but attempting to say lower, “Sorry! I’ll go now. Bye.”
Wait a few minutes before getting up, and of course Jiwoo’s lips are still wrapped around your cock as you walk towards the door. Dorm is empty. She must have performed magic taking off her shirt and underwear to play with herself because you can't remember if she's ever stopped sucking you off. The kinematics don't add up. More likely, you’re slightly faint from her perilous suction, making left and right difficult directions to parse from each other.
"Fuck you're already so good, Jiwoo." 
Pull her up and carry her to deposit onto the bottom bunk of the bed by the window.  She ends up belly diving onto the mattress’ surface and her buttcheeks recoil just the slightest bit.  Jiwoo notices and starts giggling when she plays around with her perky cheeks.
"You like my ass, oppa?" Nod.
“I said I wasn’t going to fuck your face today. Fuck. Maybe I’ll fuck you there instead,” you say in a low bass.
Her eyes turn into full moons at your suggestion. You laugh. 
”Naughty fucking girl. Next time, when you’re a good girl. Such a fun ass though.” Follow through with the compliment as you line up your cock to the prone girl’s mouth, arcing down to fondle her round buns. It's a miracle and also a bit embarrassing that your erection is soft after all that. Best guess is that it's had so much stimulation, but all of the masturbation after recalling your previous facefuck probably didn't help. Jiwoo takes her index and middle digits and raps them on your cock to a freeform beat.
“Aww oppa, your cock. I need to make it big and meaty again,” Jiwoo whines and her pout confesses that she's a little disheartened, however her eyes are more determined.
“Tell me all the ways you want me to use you." She raises her vivid eyebrows and lists her head a little forward. “Okay, miss ‘I won’t let go of this cock even when there’s others in the house’. Don’t worry, we have plenty of time. Just relax and go on.”
“Hmph. Fine. Well, your dick is right here, sooo after I lick it up,” which she begins doing by inspecting your shaft with intent, before finding a spot she deems scrumptious enough to lap up. “You fuck this dirty mouth pussy clean while I play myself on my tummy just like this.”
Jiwoo sounds ridiculous talking with her tongue out but at the same time, her cheeky lisp fortifies your cock. Her hands wander underneath herself and she reels back, titillated by her own words. You watch the small woman fondling herself with both hands while your erection at half-mast presses against her face in suspense.
“I could flip myself over and I’d never let go of oppa’s cock, I promise, then you could see your bulge in my fuck hole.”
How could this girl talk so filthy? Her face doesn’t even look like it should utter the word darn, yet here she is giving a study of her throat’s distension from your dick.
Jiwoo continues, one hand rubbing her clit fervently, “Then, maybe. Maybe oppa could get on top of me and pretty please eat my little pussy out while he shoves his cock into me?”
You couldn’t just stand idly by, though it wouldn’t be the worst with how her mouth vibrates your cock harder as her tone gets more gravelly and hungry. When you reach down, you see her wet slit preoccupied with two fingers from her other hand. It doesn’t stop you from slipping one in the increasingly creamy hole.
“Then oppa, if you still wanna at least?” her voice shrinks, but then returns in volume as she crescendos, “You keep your mouth on my slit as you lift up my legs and your silly slut is upside down and she’s choking on your cock and Jiwoo can’t breath and all the blood rushing to her head and you cum and Jiwoo doesn’t let any of spill out cuz Jiwoo is a good slut for oppa, and oppa, oppa, please!”
You join in stroking and rubbing her squishy soaking pussy lips and she looks up from her haze.
“Kim Jiwoo.” Your voice is stern and it seems more than any physical stimulation that your deep beckon is what sends her past the edge. Her pussy swallows whole your finger still inside her, wetness replacing all sensation that the digit once had. She accompanies her whole body’s spasms with loud visceral moans. It takes more than a mere moment to close her eyes and restore her breathing. The bedroom smells a little salty from all the fluids leaking her mouth and slit.
“How much porn have you been watching?” you say.
“As much as you oppa.”
Swallow down a bit of spit. “Huh?”
“Remember our very first recording session, you forgot your laptop and I returned it to you?”
“Fuck,” you say. Jiwoo stretches and lay spread-eagle on the bed, a gooey strand connecting between her two thighs. She licks her fingers.
“You're lucky I found it. Oppa, it’s all your fault I’m like this. Plus all those fancams of me in the same folder. I wanted to confess sooner but I needed more opportunities to be with you.” She sucks her hand more earnestly.
“I didn’t think sucking dick counted as confessing.”
“Hey, I did say I like you. Did you already forget? Tsk. Typical boy.”
“Look at this dick.” You didn’t have to say that because she’s already drilling holes into it with her eyes. “Remember how I said I was basically recording for free? Make your own inferences.” The round shape of her mouth in understanding is perfect.  "Now, open wide."
"Yes! Mm..."
 It’s hard to say which position is your favorite.
Fucking her face is straightforward but you pay closer attention. You’re certainly not down that deep, as you can still feel her uvula recoil on your tip and react with thick gagged out spit. Nothing like your cum but she sucks and spits the liquid in and out anyway. She definitely enjoys playing around with fluids in her mouth.
Jiwoo pulls away when she upturns herself, as she coughs with whatever throat muscles you hit. Her head hanging upside down off the mattress would be the perfect perspective to see your cock’s imprint on her neck but she still can’t manage the depth. The angle certainly makes your pistoning easier as your balls slap against your nose in more forceful pushes, playing vulgar slapping noises that mix with her gagging.
Afterwards, you lean over and move her head to get the mattress’s support instead of dangling. Hunch down to her wetness and the taste of her nectar more than makes up for the difficulty of thrusting while on top of her. Already having difficulty breathing with a cock in her airways, you don’t want to crush her under your weight. Still, you spend the most time between her thighs, taking in the muskiness of her pussy and all that it releases. It explains Jiwoo’s long drawn breath through her nose if you have a similarly alluring scent. There’s also the possibility your length steals too much air from her wet, gagging mouth but in this position, it’s her choice to hold your shaft in her throat for that much time.
Pick her up by the ass and cup the top of Jiwoo’s cheeks. Well, now they’re the bottom as she’s upside down in this piledriver sixty-nine position, both of you sucking and licking as closely as possible. She’s definitely enjoying the scents and tastes. You could drop her on her head and she'd thank you if you kept your cock in her mouth. Maybe you heard her mumble something like “yummy”, but anything resembling consonants are far past the point of physiology and linguistics. If anything, holding Jiwoo upside down makes her look more like a used sex doll than the cute girl that she is. 
A whole lot of mess to clean up later. Cans of Febreeze, maybe some rags and a mop. New sheets, soaked with nearly every bodily fluid mouthfucking can provide. However, all that work pales to the pure torture you’ve put upon yourself to not cum.  It helps with how often you pull out of her mouth as for all her prodigal gagging, she also looks thankful when you give her moments to rest her jaw and lips. Somehow you're in control the entire time yet you have not an ounce of it, avoiding your inevitable fate. Finally, you can rest. Now you’re thankful you jerked off many times before this to last as long as you have. 
Of course, resting did mean you were on an office chair and she was on her knees, but still. It’s a break from all the exercise.
“You know oppa,” she says with a smile on her face.
“I was waiting for you to ask,” mumbling as she often does on your erection.
“Jiwoo-ah! Wear lip gloss.” How she manages to get that out so adorably with a cock in her mouth, you will never know.
“But I figured,” bobbing down, “I was sucking you off so sloppily,” and up, “It’d be such a waste of makeup.”
The girl made a point though you say, “I’d still like to see it one time. Alright? I don’t wanna have to ask either.”
“Okayyyy.” She says as she purrs on your dick. The little devil knows how weak you are when she talks with a full mouth. You still aren’t going to succumb this time. Pulling out of her mouth is as difficult as last time but you snap your head back and you snap your head away. 
"Nooo." A familiar cry. What if she didn't even like the taste of cum? No time for questions as your body falls apart in the clashing brass and woodwinds. The obnoxious dissonance making you pulse and pulse. You aim below her neck to allow the cum to drip down her collarbones and petite tits. Rub her nipples, sticky with your load and she lets out a little squeal when you tweak them.
"Pwetty pwease oppa. Your cumdump Chuu-ah really wants your cum." She puts her pointer on her swollen cheek. God, she's too much for one man but that’s the situation you put yourself in. 
Plop. 
Plop.
"Jiwoo, please. It's so sensitive," you whimper as she keeps sucking the tip.
"You get to do whatever you want oppa."
"Fuck.” Pull Jiwoo off of you. “Maybe I will."
You collect your load from her tits as an impressive volume drips down.
"Ahh," Jiwoo says but you push her down one last time with your unstained hand and your other uses a finger to penetrate her little pussy, providing it with the semen that she desperately wants.
"I hope this is good enough for now." Her squeaks in time with each finger on your sticky hand exploring her insides confirm that it is indeed.
A step closer and your rehardening cock finds her labia, small but inviting. She gasps and shudders as you tease her pussy lips in a familiar way. It’s just as sensitive for her as it is for you with how much she sweats and writhes from the shaft The friction of the pussyjob is unbearable and instead of juices dripping from within her, a heavy volume of watery liquid squirts out. 
“I’m so, I’m so sorry oppa.”
“It’s okay, Jiwoo.” You put the tip in. “Doesn’t that feel so good.”
“Yes! Thank you. Awwww,” She says when you pop it out. In another world, that tip pushes past and you ravage her. But at this point, you have standards to uphold.
“Be a good girl for me and you can have more, okay?” Give her a rainbow dildo to practice with.
"Oh I already have one, oppa. This looks like it fits better though. Well I guess worse considering how much bigger it is. Just like. Yours. Fuck."
Despite all her orgasms, she looks ready to masturbate yet another time.
"We can't just cum all day Jiwoo," you say. She sighs and nods in understanding.
“Where am I gonna hide this? It really stands out.”
“Just keep it inside you.” Her eyes light up. “No wait.”
Jiwoo giggles. “C’mon oppa, they should be back any time soon.”
You finish up some final touches in your recording. There’s definitely more hitches when it comes to dealing with vocal recordings in such an improvised setting but it’s certainly not as much of a problem as looking at any of the other members in the eyes as you stay for dinner.
✦✧✦✧✦✧
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tYou tend to get in a rush when you procrastinate as much as you do. It’s her first album, there’s no reason to rush her first album. Besides, the strength of any artist’s work is in their sophomore album, since they’ve had forever to work on that first one and now people are expecting the second. In either case, you really have time, but you don’t let yourself feel that. Instead, mixing and recording, once a job you enjoyed doing, has turned into a series of stressors in your life.
Jiwoo’s in a rush too. Why is she in such a rush?
“Hello. Oppa. I. Uh. Heard you got into a fender bender.” Every word sounds laborious as she opens the door to the studio. You step out into the hallway then look left and right. Nothing out of place.
“Yeah, just some scratches. You okay, Jiwoo?”
Her lips tuck in when she walks forward even a step. “Yep, doing juust fine. We gonna get to recording or what?”
“I mean if you say so.”
Each step towards the booth has her hitch her breath just a little, but she looks focused as ever so you waste no time and hit record. Should you text another member and ask if anything's off about Jiwoo today? Her singing is fine, maybe a little more vocal fry in her voice than usual, but it fits the sultry ballad.
You text Chaewon as Jiwoo keeps trying out different intonations for the pre-chorus.
Chaewon: "she was all flirty and weird today"
You: "lmao aight, tell something idk"
"yeah yeah, but this is different" 
"different how? she's always like that"
Jiwoo sees you typing and stops her singing to ask if anything's wrong. You shake your head and wave your free hand, gesturing for her to continue.
"i guess less wordy and more touchy today? good luck, lmk if you figure it out"
"i will. see ya later" 
Curious. You set your phone down and inspect Jiwoo's eyes and her crinkled nose. Hmm. 
A few hours later, you’re still recording. For how well the session at the dorm went, it feels like you’re back to square one with all of her mistakes today. She had such a good first takes too but her vocal quality is definitely receding, and in a different way than usual.
“I need to go to the restroom. I’ll be back,” you say into the microphone.
You go quickly to relieve yourself. A lot of water today. Needed it looking at Jiwoo in whatever weird state she's in. For some godforsaken reason you have an urge to take her mouth right now and completely ruin her. This album is never coming out.
Slowly creak the door to the studio open. No need for surprise anymore. Jiwoo pulls out a dildo from her sobbing vagina in the vocal booth and drags it up her body. Her eyes are closed, her focus clearly on the sensation of the dildo finally removed for her. She really went through with your suggestion. Must've been in there for a while considering Chaewon noticed something off earlier today. The dildo meets Jiwoo's lips, both wet from her desire and she shoves it in as deep as she can in the first try. 
Walk towards the Macbook and notice that it's recording. Shit, how much space did you have left on it? Hopefully, not going to have to clean it up later.
Finally, her eyes open and she smiles looking at you while she touches herself with one hand and deepthroats herself with the other using the toy you gave her.  She pauses her masturbation for a moment, tapping her ear. A new audio clip in Ableton, so put on your headphones.
“Come here oppa. I did a bad job today, didn’t I?”
The only words she needs for you to drop everything and walk into the booth. 
“You did,” you say as you unbuckle.
In a single stroke, she swallows your cock, matching the reinsertion of the dildo into her pussy. Jiwoo makes a tight vacuum seal with her luscious lips and shows off how well she manages her breath. Air squeezes through in her nose as you rarely unfastened yourself from her suction, and as she rarely allowed you to. Her lips are a good cock ring, her mouth a fleshlight. At the very least, this gave you much patience with her recording, knowing you were allowed to use your frustrations to turn the talented young lady into an object to use.
It’s incredible how little she has to touch herself to achieve orgasm when your cock is in her mouth. To be fair, keeping the dildo as long as she has inside of her must be a feat of its own.
“Jiwoo. Did you have this in you all day? I bet you’d prefer it were the real thing, huh?”
“Mmmhm. Mmmm!" She convulses at once. The toy squeezes in and out of her while she moans and spills saliva all over your cock. “Fuck, I wanted to cum all day but I had to wait. It’s your turn now, right?”
Jiwoo pulls out the soaked dildo and with her little fingers teases the skin of your dick before maintaining a tight grip. Her hand’s perfect rhythm and all the sucking she’s done so far today gets you right there and over the edge as quickly as she did. You unload all over the colorful sex toy and Jiwoo doesn’t let you have time to think as she puts the cum-covered toy back inside her.
You suck in some air. ”Who said you could have that cum? Lie down on the couch.” No pretense. Is there love between you two? Pull down her spotted top before mounting her modest but perky tits. It’s been barely a minute yet you’re already ready and solid once again. She tries to lean her head forward to retrieve her oral punishment-
“Thank you!”
Reward. Now that you think about it, maybe this isn’t working. The supine girl beneath you flitters her lashes, curious as to why you haven’t yet thrust into her mouth.
“You know much I love to see you work for it. Go on.”
As your cock is standing upwards at attention, she struggles raising her head to match yours, gently poking her tongue out to lick the frenulum.
“Ahh. No fair! I can’t reach. Ppfh.” She spits on it in frustration. “Ppptt. Let me have it.”
Her tongue wiggles around fruitlessly. Spit on her face in retort and you both laugh looking at the mess you’ve made. Yet at last, after playing with her food for what feels like an eternity, Jiwoo manages to wrangle your head with her tongue, guiding it to her eager lips.
“Now I better not feel that barrier, okay? Track 1.” And slowly force your way into her throat. You feigned frustration with her inability to fully take you down, but this was heaven. Regardless, stopped by her cursed reflex, you say: 
“Not good enough.” You’d almost feel bad about this.
“Again.” If it didn’t feel so good.
“One more.” Another submersion into her sopping mouth, the friction of her soft lips and tongue opposes all the lubricating slop from her throat. 
Unsheathe. “Oppa, oppa wait. Let me get something. You’ll like it.” You concede, getting off of her, and she pulls from her purse bright red lip gloss. “Watch me stain your cock!”
In a rush, Jiwoo vandalizes her lips red. Her makeup artist would be embarrassed. Of course, that makeup artist would be outright scandalized if they could see the precious idol with her back hunched over the arm of the couch, her upside down face inviting you.
You walk up and give her a good view of your balls. Tickle her neck and she leans forward to plant a pure kiss. On your cock head. “You know we haven’t kissed once yet? You haven’t even said anything about how you feel about me!”
“Neither did you.” Move your hands from Jiwoo’s neck to her bare chest and play with her stiffening nipples.
“Well, let me show you.” She plants another smooch on your shaft. And another. Yet another, until it’s turned into a full-on makeout session with your penis. The upended Jiwoo has to twist herself to leave the entirety of your flesh marked with lipstick stains. However, her best work is her french kiss where takes your dick in and plays around with her tongue, as if the mindless beast could kiss back. She leans her head back out one more time to receive you.
A sharp push and her tiny tits respond with the subtlest jiggle. 
All but an inch of your shaft covered red. “I’m so close,” she pouts.
“Well, so am I.” You keep thrusting and feel your orgasm get closer. You’re on the edge.
“Mwah.” Her lips’ release leaves your blank head even emptier.  “Mwah mwah, mwah.” She fixes her top back and wipes around her lips.
She takes wet wipes then a mask from her purse while you stand dumbfounded. There are four walls in the room. Wires spill from your laptop. One, two, three, four. You are one beat away from orgasm.
Her voice snaps your focus back. “Oppa, that was a good recording session, but you know. Ha Rin unnie has to pick me up. Bye!” Jiwoo scampers away, wiping at her face.
You might actually explode next time, in more ways than one. Guess you deserve this one though.
✦✧✦✧✦✧
AFF, AO3
Just wanted to get one more thing done before the new year so I chose this since like I said, this was originally written as one part. In fact, this is actually the very first smut I wrote. However, I kept getting stuck and adding more, so a trilogy it is then. That’s right, one last one coming up!
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kagrenacs · 3 years ago
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do you have any advice for living with chronic fatigue? especially for explaining it to other people (having a lot of trouble getting my brother to understand)
I do! One of the better explanations I’ve found is spoon theory (or spell slots if you’re a gamer) Different activities use up different spoons, you can’t do two big things that take up almost all your spoons in a day, you need time to rest and recharge. But you could do many smaller things that don’t require as many spoons. And an important thing to note is rest takes longer than in abled individuals and differs from person to person.
For living with it, it largely depends on the person and their situation. A KEY piece of advice is try to be aware of your own needs, what will trigger episodes and try not to fall into cycles of fatigue/heavy work. There’s a few different books on ME/CFS that you might find helpful! They go more largely into diet, exercise, routine and sleep than I could probably do justice.
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rotationalsymmetry · 2 years ago
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More about CFS/ME!
There is an incredibly wide and diverse set of symptoms that can come with it -- I got shortness of breath, which is not common but not unheard of, and didn't get chronic pain which is very common -- and degrees of severity. Some people with CFS/ME can work full time office jobs and engage in some degree of "normal" exercise. Some people can't get out of bed even to use the toilet. Lots of people are somewhere in between.
When people have CFS/ME and haven't figured out pacing yet, symptoms can vary DRAMATICALLY from day to day and within a day, eg going from feeling pretty normal to feeling like you've got a bad flu (muscle aches, generally feeling horrible, want to sleep for hours) in a very short period of time. Sometimes even the other way, going from feeling absolutely horrible to feeling more or less fine in a matter of hours during the same day.
This is a lie. You are not fine. You're overdrawing your energy bank account and the overdraft fees will catch up to you.
When I learned about pacing (well, people lump like seven different concepts under the word pacing, when I learned how to stay in my energy envelope) my symptoms evened out dramatically and I rarely have to cancel events that I really want to go to at the last minute any more (although I do often cancel lower priority things.) But there's a high cost, which is that I constantly do less than I feel like I can do. (And even so, I often do a little bit more than I can do and then the overdraft fees catch up and I realiize "Oh, I couldn't afford that after all, I guess.)
Sometimes triggering PEM is worth it, for special occasions, but you can't do it all the time without fucking up your life.
The imposter syndrome/"am I just faking it?" can be intense. Tracking activity and symptoms on paper (or on a phone/computer) can help with that. Memory is unreliable, writing it down is better.
There were a lot of things about how my illness worked that I couldn't notice until I started staying within my envelope. I didn't think I had a better or worse time of day, because my really bad periods were all over the place, but once I stopped having really bad periods all the time my body settled into a routine where it tolerates afternoon/evening exertion much better than morning exertion. (For some people it's the other way around.) For another thing, I wasn't able to recognize when I had a big response to something that happened a day or two before, until I stopped getting wild swings in my symptoms and ability to tolerate activity.
I also noticed that if I haven't overextended/crashed in a while (like months), I seem to develop a sort of buffer against crashing and I won't crash from things that have caused me to crash in the past. This does not mean those things are safe or that I'm "better", it means I have a buffer that I'm gong through. If I keep trying to do those sorts of things, I will crash.
I get early warning signs but they are subtle. Things like feeling a little bit more tired or unmotivated than usual. If I pay attention to those I can often avoid bigger signs; if I don't I get clearer warning signs and eventually crash. ("crash" = sudden, abrupt, long-lasting reduction in apparent energy/ability to tolerate activity, plus more symptoms like brain fog. Brain fog = any cognitive difficulty, can feel like wading through soup only with your mind, can be having slightly more difficulty remembering words or where you put things, can be becoming unable to talk.)
It's not only physical exertion! That's a big one, but stress/emotional distress also costs spoons, social events and phone calls and overstimulation (like loud noises or bright or flashing lights) cost spoons, sometimes cognitive effort (that isn't related to things like making conversation and reading body language, like checking emails or studying or doing meal planning) costs spoons.
Please be aware that pacing is treatment does NOT mean you will get all the way better. You might, it's possible, bt it's more common to just experience what I'm talking about here, an evening out of symptoms, lack of the more extreme and unpleasant symptoms, more reliability. It doesn't mean you are eg definitely going to be able to go back to school or work, or do things you did before getting sick.
It is both worth doing imo and also not something that you should try to force on anyone who doesn't want to do it; everyone's got their own health vs quality of life analysis and some would rather not pace and they get to do that.
Something that made a huge change in my quality of life before pacing was figuring out how to do things I wanted to do differently. Bringing a light folding stool with me so I could sit down while waiting in line. Figuring out how to wash dishes while sitting down. Doing games in chunks with breaks rather than all at once. (OK, technically that is pacing, but this is what I mean by pacing having more than one meaning. To me, "breaking up what you want to do into small pieces and not doing it all at once" and "not doing things that aren't in your energy budget" are actually completely different concepts and the second one did way more for me than the first and is generally what I mean when I say pacing.)
more info, and success stories, at cfs self help dot org -- not putting the link in because I don't want this hidden in replies. The site has an image of a thin white woman sitting cross legged looking beatific on the front page, which I realize has Associations, but it's actually a really good evidence-based peer-support site that is not trying to sell you supplements or whatever. It is fairly recovery-oriented -- with a definition broad enough to include "some improvement", not just "back to full health -- which I realized after a while isn't really doing it for me any more, but which I very much wanted to hear when I was newly sick and in fact I did make substantial improvements in the first year-ish, which I was able to retain since. It does also run fairly privileged, probably fairly white, older, and almost all cishet women. Up to you how much you want to interact with other people vs not; there's social media groups that are good for finding people who have chronic illnesses and are also queer or otherwise marginalized in whatever ways you are.
Please ask me questions if you think you might have or definitely have ME, or know someone who does. You would be doing me a great favor. I did not get as much help as I wanted in the first 4-5 months of being unambiguously sick -- I didn't get any help worth mentioning from doctors in that time at all, apart from ruling out a variety of conditions (not their fault really, you can't tell patients what you don't know yourself) -- and I feel really driven to right that wrong in other people's lives if I can at all. Becoming newly disabled, or getting a new extra disability, or having been disabled for a while but not knowing what's going on or what to do about it, are all terrifying and isolating experiences and often the best help comes from other people who are, or were, in the same boat.
And, just so you know, even if the disease doesn't get that much better (and it might), how you feel about it and how you arrange your life to prioritize the things that bring you joy and satisfaction, that can get way better.
Hey if you're struggling with a lot of fatigue and you feel physically worse after activities that feel like exertion, ESPECIALLY if you develop flu like symptoms within one or two days of overdoing it, I am begging you to look at the international consensus criteria for myalgic encephalomyelitis, or ME/CFS.
Like if this is you:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms. 3.Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.   4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.   5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
Please read these criteria and try to figure out if you have M.E.: https://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x#t1
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