#for the record I have a diagnosed chronic illness
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me: im fine i dont have a chronic illness the doctors are lying
me: *stands up and gets sent to the shadow realm for at least 10 seconds*
#not sure exactly how long but it was at least that long#because the microwave had stopped beeping by the time i was back#I have not been able to lift my head up for 8 hours idk why I thought I could just stand with no fanfare or groveling#anyway#for the record I have a diagnosed chronic illness#idk why it’s been 5 years and I’m still like no :) I’m fine :)
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I think I need to find a GP
#Ive known this for a while but I've been chronically ill since I was seven and I don't trust doctors#The amount of times I've been told I'm too young to be sick has just led me to spot treat any symptoms I do see myself#Because I can't trust that a doctor will actually listen#Which for the record is a very shit way to go about stuff#Like I have some actual knowledge and informal diagnoses and it's enough to get by but#I think I need professional care at this point because I'm getting sickef#Medical trauma yay (not)
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Hello! I’ve recently gotten into love and deepspace. I love your writing and I was hoping to request some Sylus fluff or a headcannon of all the boys! Whichever you prefer. I’d love to see them comforting or caring for a chronically ill reader. I got diagnosed with POTS recently and doing even basic task has become a struggle. If that’s something you’d like to write, I think it’d be really cute. Thank you!!
Taking Care Of Their Chronically Ill S/O- The Love And DeepSpace Men
parings in order: Xavier x Reader, Zayne x Reader, Rafayel x Reader, Sylus x Reader genre: fluff / comfort a/n: hihi punny ! i hope you're enjoying the game !! and i'm really sorry to hear you're going through this and it's remember to know you're not alone in this. i hope you're able to get the support and care you need to make things easier. if you ever need someone to talk to or get your mind off anything, i'm here for you! ദ്ദി(ᵔᗜᵔ) i hope you this was alright and i hope you enjoy this and if i have the time ill try to write a sylus fluff !! ٩(^ᗜ^ )و ´-
⋆。‧˚ʚ♡ɞ˚‧。⋆
Xavier:
You would have to tell him what exactly you're going through to know what is going on. He'll research and look up everything on what you're going through until he's sure he knows what he has to do. He'll do his best to learn the necessary terminologies for whatever you're going through.
Obviously he would want to help. He'll reassure you that he is fine with helping you even if it were the smallest tasks like grabbing something for you or helping you write down something. He would never find anything you asked for to be a burden as long as it helps you take the weight off your shoulders.
He'll pick up anything on the floor and ensure that the house is generally safer for you. He would also try to find yummy foods that you can eat in your condition. He would also try them out with you so you don't feel alone.
I think he would also be good at making you feel validated and understood on the days when any pressure seems to build up.
He would try to stay up with you if you had a rough and sleepless night and make sure you can relax as much as possible first. He'll read you anything or watch movies with you or do whatever you want to get your mind off any discomfort.
Zayne:
He's always reading up on your symptoms and possible treatments for you. He would also have your routines memorized and know when to take your meds or ointments. If he wasn't able to stay home with you, he would text or call on his break to make sure you're okay and if you've taken what you need.
He never makes you feel like it's your fault or your a burden whenever you apologize to do something for you. He is more than happy to help and assures you there is nothing to apologize for. He is happy to be there and with you in any way he can be.
He'll also have a mini notebook or he'll have his notes app that tracks everything that happened to you. Things like foods you can't eat or updates from your checkups. Anything he can record just in case he needs to bring it up to the doctor.
Anything that's on your mind, he'll listen quietly to you rants and he'll talk you out of a bad state of mind.
He's familiar with medication due to his patients and his studies. If it's something he'll be unfamiliar with then he'll look up the side effects and makes sure that you at least have something in your stomach before you take it. It's important for him that you tell him what you're feeling. If you find the aftertaste of your medication unpleasant, he'll offer you a sweet treat after, as long as it's something that won't negatively impact your health.
Rafayel:
You'll have to explain what you're going through and as soon as he understands what you're going through, he will make it his priority to cheer you up and take care of you as much as he can.
He will always try to be there for you on your doctors appointments or any major procedures. You don't even need to ask him, he'll already be on his way there. He'll be there for you for support. He would also want to make sure you're being properly cared for.
When you're resting at home, he'll cling to you. He'll happily tell you any stories or talk about anything to you when you lack the energy to talk.
If you're slower than usual, he'll approach you directly to keep you company. If you stay in bed longer when you wake up, he'll ask if you need anything but he'll always bring you food in bed so you have energy. He'll try his best to help you. He'll bring you your favorite sweets, water, blankets, anything you want or need to get through these difficult times.
He'll always remind you how attractive you are, even if you don't feel it. Especially on days where you'll have post or pre-flare up or just a bad day in general where you don't feel like you don't look good. He'll always remind you how beautiful and how loved you are.
If you ever need space, he'll sit by the opposite wall so he's not far from you if you needed anything. If you need him to distract you, he'll chat about anything to you. If you need help with new exercises, he'll practice them with you or show you videos of what he saw online and try them with you.
Sylus:
He'll stand by you through every challenge. Whatever you're facing, he'll be there to support you.
He remains very understanding about what you're going though. He'll never make you feel guilty for being too painful or uncomfortable to do an activity or an outing with him. He'll put those aside and try his best to comfort you. Whatever is troubling you, he'll be there to listen and support you, always ready to care for you.
He is extremely attentive to signals of pain or any discomfort that you may make. He can use his evol to carry you but he's always willing to just carry you himself whenever you're feeling fatigue more than usual. He'll pick you up and bring you to any room you would like to be at. No matter where you would like to stay, he'll make the room comfortable for you. If you want to stay in bed, he'll smooth out the sheets and pat the mattress to make sure there are no crumbs in it and the pillows would be fluffed to your liking.
He'll also cook or bring your favorite meals to you so you can eat comfortably. He'll even run the perfect temperature when you want a bath or a shower and he'll add any herbs or salts to soothe any aches in your body. If your comfortable with it, he'll shower you himself. He doesn't want you too use too much energy and wants you to relax as much as you can.
Will hire the best doctors for you and he'll call the doctors regularly to monitor the progress of your treatments because your health is very important to him. He will sit by your side through every trip to the doctor. He'll be by your side on the bathroom floor or any bad nights.
If there is a time that he cannot be by your side, he'll either have one of the twins or both to watch over you. He'll literally give them specific and direct instructions on what you will need. As long as you feel the weight off your shoulders. Just in case, he'll have Mephisto to watch over you and if anything were to go wrong he'll be home as soon as he can.
During sleepless nights, he'll be right by your side, holding your hand as you both lie in bed. He'll gently kiss your forehead, temple, and hand, offering comfort and reassurance that he's always here for you.
#xavier x reader#xavier x you#xavier x y/n#zayne x reader#zayne x you#zayne x y/n#rafayel x reader#rafayel x you#rafayel x y/n#sylus x reader#sylus x you#sylus x y/n#xavier love and deepspace#zayne love and deepspace#rafayel love and deepspace#sylus love and deepspace#xavier lads#zayne lads#rafayel lads#sylus lads#love and deepspace#love and deepspace fic#love and deepspace x reader#love and deepspace scenarios#lads x you#lads x reader
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Hi! I know this is potentially not really in your wheelhouse, but do you have any thoughts on the idea that ME/CFS, POTS, EDS, ADHD, autism, PMDD and MCAS tend to cluster? It's always felt possibly kind of spurious and psychiatry-pilled to me, and also like something that might have interesting clinical/cultural precedents, but I haven't been able to find much about it.
i don't think it's surprising at all that chronic illnesses 'cluster'---they're often poorly understood, diagnosed by exclusion, and characterised by overlapping symptoms. like there are probably some shared mechanisms going on that cause many of these conditions, or underlying causes in common. as it stands many chronic illnesses are basically descriptions of symptom clusters, meaning that what causes them or creates the dysfunction is unknown thus far, so it really shouldn't be surprising to see people whose symptoms suggest multiple of these diagnoses.
wjere like autism and ADHD are concerned i do think the connection is much more spurious. offhand i would posit that, rather than evidence of some kind of biological susceptibility of certain 'neurotypes', we might be seeing the physical toll of chronic stress for people dx'd with socially alienating disorders; people who are chronically ill being more likely to pick up psych diagnoses as a kind of collateral result of constant contact with the medical system; the alienation and stress of being chronically ill resulting in various kinds of social and functional difficulties that are dx'd as psych disorders; or the effects of, say, sleep disturbances related to chronic illness causing difficulties dx'd as psychological disorders, or vice versa. that's speculative on my part though.
also you do have to keep in mind where the data come from that show relationships between various diagnoses. as in like, what country with what degree of common access to healthcare and withwhat sorts of billing practices that interact in what way with diagnostic codes. like a diagnosis is often as much about creating an official record of some accommodation need (drugs, welfare eligibility, mobility aids, etc) as it is about any kind of transcendent medical truth. again, we're talking about conditions that are often under-studied and poorly understood and sometimes treated as a kind of dumping ground for 'mysterious' or 'difficult' patient presentations. so, observations of this nature should really be interpreted in general as indicating at least as much about how a given medical system functions as about how the human physiology works.
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I was recently diagnosed with a chronic illness, which makes school extremely difficult and challenging. I'm not really sure what accommodations I can ask for (ik every school is different, especially in different countries, but any general accommodations ideas would be really helpful)
Hi!
I'm so sorry about your illness <3 I hope there's some sort of treatment to make it manageable
I think accommodations, laws, etc can vary greatly depending on age, school, and country (like you said) but a few that might be helpful are:
Designated note taker/provided notes or study guides/recorded class sessions
Flexible attendance requirement (like if a class normally punishes missed classes, that can be waived)
Extended exam time/ alternative testing environment (not testing with the rest of the class, testing at home, having extra time to test)
Alternative or minimized assignments, as long as mastery is shown (for example, if the teacher normally assigns 50 math problems, they only give you 20, as long as you get them correct)
Use of technology for assignments when it helps with any fatigue or mobility issues (like if it is more comfortable to type versus write assignments, or have an e-book versus carrying a textbook, or have a speech-to-text software if writing is painful)
Flexible seating and adjustment to environment (seating near the door if you often have to leave, a different type of seat if you have mobility devices that are difficult to access when sitting at a traditional desk, access to an elevator, use of non-LED lights)
Blanket permission to leave the classroom to go to the bathroom, nurse, guidance, etc without raising your hand/requesting a pass
Permission to have a cell phone out and accessible to converse with a medical professional, access medical monitoring devices, etc
Depending on your illness some of these may be wildly unhelpful but these are the most common ones I see! In most schools, you would just need to have a meeting with the school (and a parent/gaurdian) if you are underage) and bring a doctor's note to get these accommodations. In public schools in the US, you would be given what is called a '504' which is a plan legally requiring teachers to give you these accommodations.
I hope this helps!
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Since you've mentioned a couple of times having comorbid OCPD, would you mind explaining more about the effect that disorder has on you? Out of every PD, it's the one I never find people talking about. Due to that, and the diagnostic criteria itself being (as ever) exasperatingly superficial and vague, It's hard to know where to even look for information about it..!
Sure. I agree that it's very difficult to find information about ocpd online. I guess I could categorize my experience with ocpd into three categories: things that are absolutely recognized symptoms of ocpd, things that overlap with other obsessive compulsive spectrum disorders (like things more traditionally thought of as OCD symptoms), and things that I have to assume come from ocpd because they seem to but I don't know if they're universal because I don't see other people talking about having ocpd. So in terms of things that are definitely ocpd experiences: I really don't feel safe or comfortable in situations I don't have at least some control over. I need to control my space, my food, who is around me, etc to feel safe. This also applies to my time and schedule. I get very agitated when it's interrupted, even if I don't show it. I tend to plan my day's activities pretty rigidly and it stresses me out when I'm not able to follow through. I also have very rigid ways I like to do things, and it stresses me out if I have to do something with someone else's method or if someone in my apartment does something differently to how I would do it, especially things like eating without washing hands first, not taking shoes off before coming in, etc. I try to keep this kind of thing in check because I don't want to be controlling or obnoxious, but it causes me a lot of stress internally. This has been very difficult when I've had a job and I'm being told to do things a particular way but it's not MY way. It's also difficult when I'm intentionally trying to push myself to try a different method for, say, drawing something. Even though I'm making the choice, I'm breaking my method and it feels extremely Wrong. The next category is overlap with other obsessive compulsive spectrum disorders. I definitely get intrusive thoughts and the anxiety inducing spiral of 'something bad will happen if I don't have the tv volume set to an odd number' and 'I feel compelled to make sure my foot touches to the floor in a very certain way right now for Reasons'. I also have health anxiety that gets worse if I try to engage in reassurance seeking behavior (but this only started after I got diagnosed with a chronic illness, so it could be a combination of ocpd and trauma). But you can apply the mechanics of health anxiety to other things that pop into my head to frighten me with no basis in reality that start the reassurance seeking/me becoming more convinced the terrible thing is true cycle. Then the third category, which is random things I think are ocpd but who knows because there aren't a lot of other people out there talking about their personal experiences with it: I like recording things. Every day, I write the weather conditions down in a notebook. I also have very rigid records of my drawing time and draw with a stopwatch going to make sure I'm keeping track and write everything in a notepad++ file like so
I get extremely stressed out if anything gets in the way of this process! You could say my life kind of revolves around this actually. I've actually drawn at least an hour a day for about a decade (knock on wood...), and I track it every day. In general, I have a lot of fun creating methods and systems to follow rigidly. It's like a game even. Maybe why I like playing games with a lot of organization/time management... Love giving myself a list of tasks and completing them. Speaking of games, I love Pokemon Legends Arceus because it is essentially a checklist simulator. Also, I experience something similar to special interests but maybe not exactly the same. I wouldn't say hyperfixations either because they're not fleeting. They're very enduring. I wish I could explain more about how they're unique from either special interests (in the autistic meaning of the phrase) and hyperfixations (like with ADHD), but it's kind of hard to explain without feeling like I'm explaining it poorly. And last, something that could go in either this category or the second because it's something I've heard people diagnosed with OCD talk about experiencing is I have a weird thing with my memory where my visual/auditory memory are weirdly strongly connected. So if I'm listening to something while drawing, if I listen to it again, I can 'see' what I was drawing at the time. If I look at the drawing, I'll remember the part of the audiobook or whatever I was listening to. It's to the point that if I was listening to an audiobook while playing a certain video game, hearing the audiobook again will make me crave playing the video game really intensely! It's like I can see exactly where I was in the game as if I was playing it right now. Anyway, I hope that was helpful. I tried to include everything I could think of. My life is very rigid, but I guess if there's one more thing I could say about that, it's that the rigidity excites me and feels like it lights up my brain with feel-good chemicals. I think having ocpd is like a combination of extreme anxiety and the ability to create fun engaging activities all by myself and with very few resources.
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the thing is, misdiagnosis is a personal conviction & a retroactive pronouncement & a permanent horrifying specter, none of which are ever gonna make weight against the holy text of the medical record. like, i meet the diagnostic criteria for lupus, i have positive bloodwork for lupus, i experience certain symptoms that my extensive research has only shown attributed to lupus, i am on a drug used for lupus which manages my symptoms better than anything else has. i don’t “have” lupus because a doctor decided i don’t. & even if they had, that could be revoked – rendered false, irrelevant, untreatable – at any moment, by me moving or a physician retiring or a bad day or anything at all.
& even if it weren’t so tenuous, to structure “physical” diagnoses as even a unilateral advantage is completely baffling to me – diagnosis does not mitigate the ableist violence we experience, it just specializes it. & of course the most egregious forms of these are post-hysteria diagnoses like conversion disorders & functional disorders & fibromyalgia & what have you, but any label can be a bad one when applied under a violent system, even one that’s accurate.
idk i just wish there was a broader movement for deconstruction of all diagnostic labels bc i feel like even most people who recognize psychiatric diagnoses as socially constructed still talk like there is a knowable physical reality of chronic illness that can & should be sorted into distinct boxes & that just. isn’t true & is also so dangerous + damaging. diagnosis does not guarantee beneficial treatment & treatment should not be predicated on diagnosis.
#idk if this makes any sense lol#mac.txt#diagnosis is a form of violence#abolish the clinic#chronic pain#chronic illness
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The Psychology of Qi Rong (TW for cannibalism and mental health)
This is a review of Qi Rong's behaviour and symptoms in relation to this authors note. According to MXTX, if put into a modern day context, Qi Rong would be said to have bipolar disorder. In order to verify this statement, this post is dedicated to comparing actual symptoms of bipolar disorder and Qi Rong's behaviour from the novel in order to prove this statement true.
I would like to put out a disclaimer that I am not a licensed psychology practitioner, but a student who hasn't finished his degree yet. I am simply writing this because this authors note wouldn't leave my brain. Please don't expect total accuracy from this post, though I will try my best to ensure that there is no error on my part
I would also like everyone to note that the term bipolar itself, is used to describe a spectrum of disorders, and that simply regulating it to one term would be incorrect, and that treatment can vary depending on the disorder
Bipolar Disorder: History, Symptoms and Probable Causes
Bipolar disorder is characterized by chronically occurring episodes of mania or hypomania alternating with depression and is often misdiagnosed initially. Treatment involves pharmacotherapy and psychosocial interventions, but mood relapse and incomplete response occur, particularly with depression.
(I want everyone to make note that the first recorded case of Bipolar Disorder as an illness was by Pierre Farlet in the mid-19th Century (1851-1854), who called it “folie circulaire” (circular madness). It was defined by manic and melancholic episodes separated by symptom-free intervals.
In 1854 Baillarger used the term "folie à double forme" to describe cyclic (manic–melancholic) episodes (Pichot 1995; Ritti 1879).
There also seems to be a mention of bipolar disorder (Unsure of this, take with a bit of salt) in the book Eight Treatesies on the Nurturing of Life by Gao Lian (Different character from the Lian in Xie Lian); dating back to the Ming Dynasty (1591 {first publication()} [requires fact checking])
(Note: Records of treatment of mental disorders in Ancient China go all the way back to the Tang Dynasty. If you check wikipedia, there is the claim that it goes back to 1100 BCE, which I can't confirm [requires fact checking])
Criteria to be met before diagnosing someone with Bipolar I Disorder according to the DSM-5 are at least one manic episode. This may be preceded by and may be followed by hypomanic or major depressive episodes and the occurrence of the manic and major depressive episode(s) is not better explained by schizoaffective disorder, schizophreniform disorder, delusional disorder, or other specified or unspecified schizophrenia spectrum and other psychotic disorder
Manic episodes are characterised increased talkativeness, rapid speech, a decreased need for sleep, racing thoughts, distractibility, increase in goal-directed activity, and psychomotor agitation. Some other hallmarks of mania are an elevated or expansive mood, mood lability, impulsivity, irritability, and grandiosity (Can be remembered using the DIGFAST mnemonic)
Rapid cycling in bipolar disorder is defined as having at least 4 or more mood episodes in a 12-month period. These mood episodes may be manic, hypomanic, or depressive but must meet their full diagnostic and duration criteria. These episodes must be separated by periods of partial or full remission of at least 2 months or be separated by a switch to an episode of opposite polarities, such as mania or hypomania to major depressive episodes (Note: Switching from mania to hypomania or vice-versa would not qualify because they are not opposite polarity). Rapid cycling bipolar disorder patients have been found to be more resistant to pharmacotherapy.
Hypomania and mania can be distinguished by a certain feature- hypomania does not cause major deficits in social and occupational functioning. The duration of a manic episode is at least a week, while a hypomanic episode is about four days
Symptoms of a depressive episode include feeling very down/sad/anxious, slowed down or restless, trouble falling asleep, waking up too early, or sleeping too much, talking very slowly, feeling unable to find anything to say, or forgetting a lot, trouble concentrating or making decisions, unable to do even simple things, lack of interest in almost all activities, and feeling hopeless/worthless, or thinking about death or suicide
(Note: According to the DSM-5, major depressive and hypomanic episodes are common in bipolar I disorder but are not required for the diagnosis)
Bipolar II Disorder is defined by a pattern of depressive episodes and hypomanic episodes. The hypomanic episodes are less severe than the manic episodes in bipolar I disorder
And finally, cyclothymic disorder/cyclothymia is defined by recurring hypomanic and depressive symptoms that are not intense enough or do not last long enough to qualify as hypomanic or depressive episodes
Like in the case of most mental disorders, there is no known cause for disorders on the bipolar spectrum, however the most widelt agreed upon risk factors are brain structure and functioning (some studies show that the brains of people with bipolar disorder differ in certain ways from the brains of people who do not have bipolar disorder or any other mental disorder), and genetics (some research suggests that people with certain genes are more likely to develop bipolar disorder. Research also shows that people who have a parent or sibling with bipolar disorder have an increased chance of having the disorder themselves).
In relation to genetics, many genes are involved, and no one gene causes the disorder (Which, if the authors note is true, we can assume that one of his parents carried the genes for it, most probably his father).
青鬼戚容
Qi Rong needs no introduction or abstract (Because I don't have to submit this to a prof hehehe) to start with. He is iconic, and rightfully so. In order to try and analyse Qi Rong's behaviour, let us take a glance at his introductory (In this case, first physical) appearance.
In his first (physical) appearance Qi Rong talks shit about others, which isn't really notable in regards to this topic. Its like my Mother after the guests leave and she's finished playing social politics. Its nothing interesting, just the typical criteria for the average aunty.
But you know what is interesting? His lair.
He has a throne, a banquet hall style dining set up. The only things he needs is the cauldron to cook (human) meat. I don't remember any of his subordinates needing to eat, and considering all of the salted carrion he has hanging around; not to mention the fresh meat stores he keeps (Three hundred humans...three hundred), he doesn’t eat a good chunk of the humans brought to him immediately. Its all unnecessarily grandiose for a single person, (We know that he doesn’t invite any dinner guests over. If he did, they'd be the main course)
If you notice Qi Rongs behaviour a majority of the time fits the criteria for a manic episode. Its also probably why his schemes seem to fail most of the time. Note that there has to be a remission period of two months in the case of rapid cycling (Which I belive occurs in Qi Rongs case), so MXTX is right, in a way. Qi Rong would be diagnosed with a disorder on the bipolar spectrum, more specifically Bipolar I Disorder
(One may also assume that he had cyclothymia during his days as a prince, but I believe that its just a showcase of certain symptoms of Bipolar I Disorder from a young age. He always had it, but it didnt manifest much more visibly until later on in his life)
Now Lets Talk About Kuru
Kuru is an infectious, acquired, non-immunogenic, fatal neurodegenerative prion disease. It progresses rapidly with cerebellar and extrapyramidal signs and symptoms, with death occurring within one to two years of onset of symptoms. What causes Kuru? Cannibalism, or more specifically the consumption of the brain tissue.
The diesease originated and was confined to the Fore Tribe in the Eastern Highlands of Papua New Guinea, where ritualistic cannibalism was practiced. Kuru is now extinct due to the outlawing of ritualistic cannibalism in the region.
(Note: There is a theory that cannibalism occurred due to famine, and that it was ratonalised by the Europeans who arrived their as a ritualistic practice. Colonisers have also used the excuse of cannibalism to colonise and kill indigenous populations)
What causes cannibalism? Usually, the two most predominantly ascribed motivations are hunger and hatred, and the occasional belief that eating human flesh is medicinal.
(This is a bit of a personal note from me, but from what I've heard, human flesh is not good for any living creatures health. In my hometown there are plenty of stories about animals going mad or dying after eating human flesh)
A point I want to make is that we do not know how Qi Rong died. Did he die from being eaten alive? Or did he pass from a neurodegenerative disease caused by consuming human flesh in order to survive? If its the latter, it could explain his behaviour.
Kuru is also known as the laughing disease, as patients exhibited sporadic uncontrollable laughter, due to being emotionally labile. Perhaps Qi Rong passed before the disease could reach the sedentary phase? Maybe he was killed before that. Symptoms of Kuru can take time to manifest completely, so I feel that this theory should not be discounted.
Reference(s)
https://www.ncbi.nlm.nih.gov/books/NBK559103/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188776/
https://www.nimh.nih.gov/health/topics/bipolar-disorder
https://www.ncbi.nlm.nih.gov/books/NBK493168/
https://www.ncbi.nlm.nih.gov/books/NBK519712/table/ch3.t8/
https://web.archive.org/web/20070928103521/http://www.nmh.gov.tw/nmh_web/english_version/exhibition/exhibition_s0703.cfm
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2813703/
A note of gratitude for @toowolfdelusion for posting that authors note, otherwise this brainfart of mine would not exist
#qi rong#tw: cannibalism#tw: mental health#leafs lilting#or metaing in this case#now to move on to fun stuff that doesnt need me to think#like my qr gets reincarnated as wwx#because i thinks its hilarious#this is what im using my not yet achieved degree for#not complaining#its kindafun when its not for class#tgcf#tian guan ci fu#heaven official's blessing
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I've been walking around with this hypermobility diagnosis my entire life, and no medical professional ever told me definitively what it means. My parents can't remember specifically when I was diagnosed or who by – I was a severely premature baby with a rare disorder and a slew of other health issues, and the hypermobility got lost somewhere in there with all the other medical noise. Mostly, I was left to see hypermobility as something that made me super bendy and was fun to pull out at parties when I made all my fingers bend weirdly.
Everything I have been told about hypermobility came to me piecemeal, usually by happenstance. A nurse who said that the hypermobility explained why it was always difficult to draw my blood. A GP who mentioned that hypermobility was likely why my ankle hadn't broken, but had instead subluxated and then been left to heal incorrectly because it'd been misdiagnosed as a sprain. A rheumatologist who I was only seeing because of a colossal fuckup, who explained that hypermobility makes you far more prone to bruising. Everything else, I had to find out under my own steam, trawling websites repeatedly over the years and watching as the body of information grew.
When I went to my paediatrician with joint pain, she told me it was growing pains on multiple occasions. I've been to physiotherapy three times and multiple OTs when I was younger and none of them noticed that my knees' resting position was hyperextended. (It took 22 years and the aforementioned colossal fuckup that landed me back at rheumatology instead of seeing the chronic pain specialist nurse for someone to tell me that that wasn't normal.) PE teachers and gymnastics instructors made me feel lazy and inadequate and work-shy instead of thinking hey, this child has told us he's hypermobile, maybe we should pay attention to that. For a little while I got to use a portable slanted desk in middle school which was meant to make writing easier for me in lessons (it didn't). In high school I got to use an AlphaSmart – not because anyone listened when I explained that writing caused me serious hand pain, but because I was writing too slowly to keep up in lessons (and I was still told repeatedly by teachers that they were surprised I needed the AlphaSmart because my handwriting was so neat, as if that had anything to do with anything). It wasn't until my GCSEs that I first got serious accommodations in exams.
Did all those doctors I saw about my pain just think I was, I don't know, too young to be sick? I was born sick. It was there in my records! They knew, and they either decided I was some other speciality's problem or they straight up did not care.
Children can be ill and disabled. More than that, they deserve to be given all the information they might need and be offered necessary accommodations. They should be listened to! Parents shouldn't have to fight and claw for something as simple as a crappy plastic slanted desk. If I could trawl my brain to extract everything I'm feeling right now and inject it into the minds of every doctor who failed me, I would.
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The field of post-infectious diseases didn’t (except for ME/CFS) exist prior to the coronavirus. The medical field focused on treating infections – not dealing with their aftermath. Recent studies indicate why that’s not going to fly anymore – and it’s not just because of ME/CFS. It’s because large studies are indicating that a coronavirus infection – whether it’s mild or severe – is upping the risk for all sorts of diseases.
Most of these studies are very large – running into the millions of participants – that rely on electronic health records. They’re comparing the incidence of new diagnoses in people who were infected with the coronavirus with those who weren’t.
Eric Topol recently wrote a blog on the autoimmune implications of COVID-19. Three recently published large studies lead Topol to report a “substantially increased risk of developing a diverse spectrum of new-onset autoimmune diseases.“
The increased risk was not low – a 20-40% increase in the likelihood of coming down with one of these illnesses – and the range of autoimmune illnesses affected was diverse indeed: the studies pointed to dramatic increases in the diagnosis of almost 20 autoimmune diseases. (See blog for the diseases). Since autoimmune disease can take a while to show up after an infection, one can only assume that this number will rise over time.
Other studies have found a marked increase in neurological diseases, including some one might not have thought. Besides things like cognitive disorders, sharp increases in the rates of psychotic disorders, epilepsy, stroke, and parkinsonism as well as others.
Cardiovascular and metabolic diseases have not been as well assessed but increases in asthma, type I and type II diabetes, respiratory diseases, heart failure, and stroke have been seen.
Oddly enough, none of these studies have assessed increased incidences of the one disease long COVID has been most associated with – ME/CFS. Nor have they assessed new diagnoses of fibromyalgia, IBS, dysautonomia, postural orthostatic tachycardia syndrome (POTS), or gynecological diseases.
If you want more research into post-infectious illnesses, then linking an infectious event to dozens of serious illnesses can only help.
The study makes one wonder how many chronic illnesses were triggered by an infectious event.
For all of its horrendous impact, the coronavirus pandemic is clearly going to force the medical profession to take a very close look at what happens during an infectious event – and afterward – and that is good news for anyone with a post-infectious illness like ME/CFS.
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Doctors often tell patients, often chronically ill patients to stay off the social media that talks about their illnesses and to not look stuff up, and i can understand why this may be problematic but they also aren’t taking into consideration the positives and good things that can also occur from this.
POTS and other chronic illnesses are having a higher social media presence, and because of this it’s created quite a big stigma surrounding it, and people often think that these illnesses are just becoming a trend, but they don’t understand how helpful the representation is for so many people.
I do often see people in the comment section of these videos who will have one or two traits and immediately panic thinking they have these things and i can understand how that part isn’t great, but in some cases it actually is these posts online that help people get diagnoses and learn more about themselves.
I would not have been diagnosed with POTS and getting treatment if it weren’t for social media, and my doctors don’t know much about POTS so most of the tips and advice and treatment methods that i’ve found have been from social media, and i would not be where i am without it.
I struggled with dysautonomia for my entire life, and it had been established by my one doctor who actually knew about these conditions but he retired and the new doctors i was switched too don’t know much about my health conditions, so getting diagnoses and treatment has been a very slow process.
My dysautonomia is believed to have turned into POTS in early 2021 after i got covid, and for over a year i was struggling with debilitating symptoms and had no idea why. I was just trying to survive high school, and all the sudden i was getting sicker and sicker and it was causing quite the divide socially.
I had been diagnosed with fibromyalgia, and because of it i had already been limited in my physical activity, so i was just told that my POTS symptoms were because i was out of shape.
I tried to push myself to fix this, which only ended up making me feel worse. Sometime along the road of me trying to get more active, i got a fitbit.
I started using my watch to monitor my steps and sleep, and i noticed that my heart rate would shoot up to the 150s-170s when i was simply standing still, so i sat down, and my heart rate immediately dropped to the low 100s.
I thought that this may be a glitch with my watch, but was still concerned as i was aware that my heart rate should not get that high from just standing still, so i started googling. As a result of my search, the name Postural Orthostatic Tachycardia Syndrome came up. I did some reading, and noticed that a lot of the signs were pointing to me, especially with the already established dysautonomia.
I had already dealt with a lot of doctors telling me that i was just paranoid and a hypochondriac, and i knew that watches sometimes glitched or didn’t work correctly, so i went to my pharmacy and got a pulse ox, and did the same standing test and it did the exact same thing as my watch.
I took pictures of my heart rate and started recording it on the charts that my watch had, and brought it to my next doctors appointment, explained my symptoms and then mentioned that i had heard of the condition POTS, and that it seemed pretty similar to what i was going through. My doctor had my do a short standing test in the office, and i had a 70bpm increase in my heart rate.
My doctor agreed that it definitely looked like POTS and she said that i met the criteria for a diagnosis, but she said she didn’t know very much about the condition and had only briefly heard about it, so she referred me to a cardiologist in another city as that was the closest specialist to me, but they denied the referral and said that they weren’t taking patients with POTS, and they gave her a information sheet and gave her some tests to do to rule out anything else.
The tests came back, and again it all pointed to POTS, but my doctor was scarcely familiar with the condition, and wasn’t comfortable giving me an official diagnosis, so she gave me an informal diagnosis. When it came to treatments, she also wasn’t familiar with anything besides telling me to drink more water, exercise, and increase my sodium intake, and the only medication she was familiar to treat it with was propranolol, so she prescribed that, but it unfortunately didn’t help much, so i wasn’t left with much help or advice.
The things my doctor recommended weren’t enough, and because i didn’t have an official diagnosis or really any information at all from my doctors it was hard to get accommodations with school, and i wasn’t sure what else to do, so i did what doctors recommend against and went to google and social media.
It was then where i found so many people like me who i could finally relate to, and found so much information about my condition and tips and tricks to help manage it.
Because i finally knew more about how to manage my POTS, i started trying out more things and in the last year i have learnt more than i had in years of going to doctors, and i also finally had a community where i felt less alone.
I was able to advocate for myself, and two years later, this february i finally got in to see a cardiologist and now have a proper diagnosis, and he was able to provide some more insight and treatment options for me and i’m finally starting to notice some improvement and have a hopeful plan for the future.
In cases like these, social media representation of chronic illnesses is not always bad, and can in my opinion, actually save lives. If i had not had access to these communities and help, i genuinely can say that i would not be where i am at today, and i am forever grateful for the communities that have been created.
#chronic illness#chronically ill#pots#pots syndrome#postural orthostatic tachycardia syndrome#fibromyalgia#ehlers danlos syndrome#hypermobile ehlers danlos#heds#social media#representation#rant post#awareness#chronic pain
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ME
I am severely ill with chronic illness.
OPTICIAN
Tell me more.
DENTIST
Here are some things that might make it a bit easier to look after your teeth. What do you think?
NURSE
Yes, we’ve got a note of that on your file. Let’s work around your needs.
ME
I am severely ill with chronic illness.
DOCTOR
No you’re not.
ME (baffled at first, then incredibly frustrated but remaining polite, calm and keeping things professional)
...as you will see on my medical record, I have X and Y diagnoses. These are the symptoms I am dealing with (lists extremely disabling symptoms).
DOCTOR (angry, making no attempt to hide it)
What the fuck do you expect *me* to do about it?
#cw medical trauma#medical trauma#medical gaslighting#disability#chronic illness#me/cfs#myalgic encephalomyelitis#ibd#Inflammatory Bowel Disease#ulcerative colitis#pots#Postural Orthostatic Tachycardia Syndrome#Postural Tachycardia Syndrome
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ALL of them.
OK SO YIU HATE ME
1. how many followers do you have?
somewhere around 1.7k i lost track a long time ago
2. whens the last time you went on a date?
june? its been so long ☹️
3. how many posts have you made?
WELL over 20k this account is 3 years old
4. what type of shoes do you wear?
white avia elevates or my blue converse
5. what color are the walls of your room?
cream at my moms, brown at my dads
6. where are you right now?
in english im about to pull the trigger
7. would you consider yourself good at art?
perchance…. i know im alright enough at it that people like my art and make it their pfp sometimes. i even have a mutual that printed a drawing i did of atsushi and put it on their wall💀
8. who was your first kiss?
you😛
9. do you still sleep with stuffed animals?
YEA LIKE 5 LMFAO
10. whats your favorite piece of clothing you own?
i have a really nice red cardigan that i basically live in at home
11. do you live in an urban, suburban, or rural area?
suburban all around i think i dont remember
12. whats your favorite store to shop at?
goodwill🫶
13. if you had to choose one POSITIVE word to describe yourself, what would it be?
gentle i think
14. do you collect anything?
classic novels! im restarting my collection of tiny bear figurines and friendship bracelets tho
15. whats the last thing you ate?
i had a banana applesauce like an hour ago :)
16. if you go to therapy, do you like your therapist?
i go once a month and shes nice! got me referrals for diagnoses so that was chill
17. whats one thing you want to buy, but dont have the money or resources to get it?
WRIOTHESLEY DOLL.
18. whos the first person you can think of?
you
19. how old were you when you found out santa wasnt real?
i think ~5? my cousin told me :(
20. if you could revive one tv show that has been cancelled, what would it be?
jjk bro pls revive and continue for me. i need satosugu to be happy
21. do you consider yourself a part of any alternative subculture?
i dont think so!
22. who was your childhood favorite music artist?
taylor swift or sir mix a lot
23. cds or record players?
despite my extensive cd collection i would say records
24. do you believe in any conspiracy theories?
i wish but i think too rationally for any of that
25. would you get back together with an ex if given the opportunity?
i think people always deserve a second chance and we are legitimate living proof of that, even if that concept like translates into relationships. im nowhere near ready for anything right now but if i ever got back together with ANYONE they would have to change a lot. i have hope in everyone tho
26. favorite kids show character?
kwazii from octonauts :)
27. is the person you call your best friend actually your best friend?
yeah!
28. when youre sad, do you prefer to listen to music to match your mood, or listen to happy music?
sad music all the way. i rarely cry so when im genuinely upset its nice to get it out to sad songs yk
29. whats the last outfit you wore?
im a chronic outfit repeater so. white turtleneck under a dark green sweater that has pumpkins all over it and dark brown cargo pants. ive worn this like 10 times
30. do you have any online friends?
YES alice ezra and skylia are the ones i talk to the most!! but i have a lot of mutuals i love interacting with ppl
31. least favorite clothing style that is currently popular?
those white fox hoodies make me carnally angry
32. how often do you do your laundry?
once a week at my dads, twice a week at my moms. its a weird system but i have more clothes at my moms currently
33. do you prefer silver or gold jewelry?
gold, silver makes me look sad and grungy
34. whats your book/movie/tv guilty pleasure?
i like reading cherry crush on webtoon when im bored💀🙏
35. if you could change your hair however you want, how would you change it?
id probably dye it to calico colors but im scared ill look like a goof
36. do you paint your nails?
sometimes! i did them blue like for a day and then i got bored. i pick at them too much so its like a little treat
37. whats an uncommon/specific/ obscure topic youre interested in?
vampire burial practices and eastern european rituals
38. whats the name of your first pet?
KITTY💀 he was an orange cat that got eaten by coyotes
39. whats one feature you would change on tumblr?
im not active enough to notice anything…
40. whats the most interesting item you own?
i think a tiny glass giraffe i love him
41. would you rather go on a date at a museum or a concert?
museum all the way i love intimacy with that kinda thing
42. whats one regret you have?
i could go into extensive detail about what i seriously regret in my life but i think my main one is not telling you enough before we split apart
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Not the colour blue
I'm spending today photographing and uploading documentation from my childhood for my upcoming adult ASD assessment. My heart is breaking for this kid on the pages of school and special educational needs reports from 1988. She's reporting stomach and knee pain, chronic fatigue, textbook childhood chronic migraine worsening at menarche, shitty PMS and painful periods, and she's falling into severe depression and anxiety because she's being disbelieved and punished for all of that. She's become terrified in school, of school, despite academic excellence, but every source of 'help' is trying to shoehorn her back into mainstream education as if the issue is behavioural, not medical.
"Claims to be ill to justify absence". "Investigated but no medical cause found." "Is receiving medical support with these issues." 'Psychosomatic' is the new 'hysteria'.
Much of this paperwork is from 40 years ago, give or take. I remember the context and much of the detail. I remember complaining that professional adults were putting words in my mouth and pressuring my mum to agree with them. I did not, sadly, have the vocabulary back then to respond with the words I wanted on record about the reasons I was struggling or the possible solutions - words like "overwhelmed" and "meltdown" and "pacing" and "rest". So I was diagnosed with severe anxiety - a fairly typical presentation for an autistic girl masking the crap out of her real self all day, every day, in the desperate hope of fitting in. Educational psychologists demonised my dad. A defensive secondary school demonised me (but, helpfully for current purposes, did so in terms that, today, read like textbook autism-masking in girls rather than a misbehaving little brat with hypochondria. Vindication?)
This all sounds really negative and whiny, I know. It's not, I promise. I am angry on behalf of that little girl, and all the other kids like her who spend their lives trying to argue with medical authorities that the colour black is, in fact, not the colour blue, whatever they say.
Every bit of paper here, bar the defensive school's statement, says I was doing my best. Always doing my best, always willing, polite, articulate, academically capable and self-motivated. Socially isolated, but causing no trouble for anyone if left alone to be so. I knew one colour from another better than many functioning adults, even if I couldn't find the words to say so when I was 14.
Maybe I'll be diagnosed with ASD at the age of 50, maybe not - the absence of an adult who can remember this period and fill in the observational evidence side of the assessment is a real barrier to an accurate diagnosis, but this 1988 SEN paperwork at least provides a snapshot of one neurodiverse and overwhelmed 14 year old who held out with rational arguments and consistent statements against the idea that her parents were to blame for any of this. Held out against the idea that illness was faked as an excuse to avoid school. Who proposed practical solutions and gave them an honest try, even when they were a disaster. Who began to thrive when a short-term placement in a small special needs group became possible, only to flouder again when it ended.
I'm mostly writing this because I know that, still, children and teens are struggling to be believed when they say, "something's really wrong, I'm really struggling with 'normal' expectations here, please help me figure it out and cope". Or whatever words to that effect they can muster at their developmental age. "A headache in my tummy" is the classic one for littles with migraine. Adults in general have got better at listening - at knowing there are things like ASD and AD/H/D and chronic illness to watch out for, but I know that young people are still too often overwhelmed by and underprepared for independent adulting in the same way that I was (and, when pressured from the outside, still am) having been punished by the education system. My 18 year old nephew just paid for these struggles with his life.
I'm here to say that you're not alone if you're struggling. It's never too late, and the world does move on from old ignorance. Slowly, slowly, but it does. Vindication will probably be yours before too long, but with or without it, you'll grow up to be you. That's all anyone can reasonably ask. That's what I did - the only thing I could control. Being myself. I didn't think I'd survive being this girl I'm so angry for, but I did survive. I found my own path when nobody would help me, and when the internet came along, I found so many people with similar stories and knew that I wasn't alone. Slowly, at 50, I'm finally unlocking the puzzle box and finding my answers - and I'm believed.
You're not alone if you're struggling. Struggling now doesn't mean that you will always struggle. Lack of answers now doesn't mean that answers will never come. You're always you, and it's enough. Take it from that girl who lived it. It's enough to build a life on, so please don't let go.
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About Me
Carly - she/her. 26
Libra Sun Libra Moon Libra Rising
Canadian
Bisexual but am in a loving relationship with my husband! We have been married for just over a year and dating for 10!
I went to university for Drama and Teaching. I was teaching grade 7-9 french and drama but have taken some time off for my physical health. I really love teaching but am hoping I can find a new job in a different school or outside of a traditional classroom!
In my spare time, I love acting and singing. I just performed as the highschool lead Ellie in Freaky Friday the Musical and was going to Nationals for the World Karaoke Competition (I was actually going to make a battle of the bands fic and record reader’s band’s cover myself hehe). I had to back out of the karaoke competition unfortunately because I had a pretty big health scare and almost died.
I live with a lot of chronic illnesses. When I was young I was diagnosed with Celiac disease. In highschool I was diagnosed with psoriasis. I eventually was having issues with my joints in my early 20s (my hands were locking and I was tired all the time). Lo and behold, I got diagnosed with psoriatic arthritis as well. Last year, I struggled even more with my health and my arthritis seemed to be getting worse. I ended up having to go on special medication, which stopped working and I was then diagnosed with fibromyalgia in June. Because of a lot of medical trauma, I have also been diagnosed with GAD and chronic depression. It has been a really hard couple of years and I have been struggling a lot but I am really happy that I have a great medical team behind me.
I started this tumblr in the midst of my lowest point both mentally and physically. I fell in love with ST4 and Eddie Munson (like most of us hehe). I was so inspired by the fanfics that I had written and I wanted to give my own go at it, Hence Angry Heart. Y’all ate it up and here we are and I am so thankful for you!
My favourite foods are poutine, ramen noodles and cookies.
I love playing video games and my favourites right now are Dead By Daylight, Slime Rancher and Overwatch
I also really enjoy reading. My favourite author is Stephen King and I am currently reading It. My favourite books of all time are The Shining and The Duff.
I have a shihtzhu named Boss and he’s the love of my life! See a picture of him below.
I just want to thank you all one more time, I have loved being on this journey of self-discovery and reigniting passions for writing and creating. I am really thankful for all of you!! I have met such amazing friends and supportive people. If you feel like you ever want to talk, my requests or inbox is always open!! Thank you for sharing your space with me.
#sbout me#personal#cery writes#carly's thoughts#stranger things#fanfiction author#face reveal#angry heart#checkmate#masterlist#i love you all#follower milestone#new followers#i love my mutuals
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Cara Beth Satalino — Little Green (Worried Songs)
Photo by Justin Flythe
Turning into an adult has never been easy, but the people who progressed from late teens and 20s into mid-life over the last couple of years have had an especially rough go of it, given the pandemic, the lockdown and the oncoming climate apocalypse. Cara Beth Satalino, the fresh-voiced center of country-folk Outer Spaces, was among this unlucky cohort. One day she was carefree, singing her songs in bars and small clubs, the next she found herself diagnosed with chronic illness, isolated in New Jersey and unexpectedly pregnant.
The title track of this first solo album tracks that series of events in luminous folk style, a fragile voice pushing up through reverb shrouded guitar. “I used to be puppy dog, I used to be a little green, little leaf unfolding, reaching out for anything at all,” croons Satalino in “Little Green,” the brief song that is, maybe, the key to the whole album. “I used to play on my guitar, up in there at the bar, I used to sing a yearning song, a little leaf unfolding, little leaf unfolding.” The “used to” part is heartbreaking, but the song suggests a path out, the possibility of tending a garden where other leaves may eventually unfold. Satalino sings in a tender but resolute way, making her peace with the new normal.
These songs have a fresh-scrubbed authenticity, centered on Satalino’s raspy soprano and forthright language, though they often swell, mid-cut, into multi-voiced, descanting fullness. “Time,” for instance, begin in simplicity, its jangling guitar paced by kick drum, a pedal steel curving up through the verse. Satalino’s singing is straightforward, rich but unornamented, until it blossoms in dizzying harmonies and counterpoints, suddenly overwhelming.
Satalino’s tunes range in tone from jangling folk pop to near country, think Waxahatchee but not as southern. She sings about Volvos station wagons, not pick-up trucks. A few, like “Daylight Savings Time,” feature wavery keyboard or maybe recorder melodies that shade them subtly into 1960s folk territory. Yet though the accompaniment can be flowery, the words are precise and workmanlike. Consider this, from “Daylight Savings Time”— “Today I woke up feeling rested/with an hour to spare/free time in my pocket/time that was not there yesterday/it’s on the front page/it’s the good news we never gave/one solitary hour feels like money to be spent.”
Though Little Green is a solo album, Satalino is by no means alone. Her partner in Outer Spaces, Chester Gwazda, is a big presence, playing bass and keyboards on most tracks, and guitar and drums on a couple. Angie Boylan, who has toured with Sleater-Kinney and Maria Paternoster, picks up the rest of the drumming duties, while Dan Kassel adds cello. Nicholas Metz is especially effective on pedal steel, nudging cuts like “Outlaw” into rich twanging country. The arrangements never overwhelm. Satalino’s voice and stories remain the focus. But they do expand and enliven her songs, and you can hear a certain joy in the musicians’ ability to play together again after a period of separation.
Despite the troubles that surround it, this isn’t a sad album at all. It finds ways to celebrate the good parts of the last few years, as in “The Great Liberator.” Sings Satalino, “Walked down to the farm to watch the eagles catch the sun, it doesn’t seem like much but it’s a new brand of fun.” Like Little Green.
Jennifer Kelly
#cara beth satalino#little green#worried songs#jennifer kelly#albumreview#dusted magazine#folk#country#outer spaces
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