spencerrscardigans - Tumblr blog

[spencerrscardigans]

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 when i was 14 after i got covid, and for over a year i was struggling with debilitating symptoms and had no idea why. I was just starting high school, and 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.

[spencerrscardigans]

there was something that got brought up in therapy that my therapist just didn’t seem to get so i wanted to talk about this here to see if other people, like chronically ill people have or do feel this way.

i hate being told i’m strong/resilient.

for my entire life i’ve had people tell me that i’m strong, that im resilient, that im so mature for my age.

me and my therapist (i no longer see her as she wasn’t over all the greatest) were talking about my life and how i’ve had to deal with a lot of things that most people my age don’t, and i was talking about how unfair it feels, and she was trying to find some positives in my experience, and used the example that it has made me resilient.

for one, my home life was very unstable when i was young, my parents divorced and my dad was very emotionally and verbally abusive (im out of the situation now) and because of this i was more “mature” for my age because of the fact that i had dealt with difficult situations from a young age and was forced to grow up way earlier than i should.

i’ve also been told this by doctors and therapists and teachers in regards to me dealing with health issues.

because of the fact that i have had to completely reevaluate my life and deal with very debilitating illnesses, my priorities and concerns are a lot different than other people my age, and when i was talking with my occupational therapist about ways to help manage my life while dealing with my illnesses, she told me that she feels like she’s talking to an adult and that i’m the most mature person of my age that she’s met.

when people tell me these things, like in the context when my therapist was trying to make me see the positives of this, they mean well, and really it should be taken as a compliment, but i personally have a very difficult time seeing this as a good thing.

the way i see it, i shouldn’t have to be strong. i was a child, i practically still am, i shouldn’t have to be so strong and resilient. the reason i am so “strong and resilient” is because ive been forcefully dealt frankly a very unfair hand in life, and i have a hard time seeing anything positive in it because of this.

yes, being mature, being resilient is helpful, but reason i am these things was unfair.

i so wish that i had the opportunity to learn and become mature and resilient from normal life things, i wish i became this way the “normal” way. the way most people do.

having chronic illnesses, and also being neurodivergent, i already have such a high wall/divide built up between me and other people my age, i feel like such an outsider, and i just want to be normal.

i’ve had such a hard time making and keeping friendships because of this as well, i’ve lost so much because of it that i have a really hard time being grateful.

when i tried explaining this to my therapist she didn’t really know what to say besides the whole “well just try to look for the positives”, and obviously since she has not had to deal with these things she doesn’t understand so i thought i’d post this here because it’s really been on my mind lately and im hoping that maybe im not completely alone in feeling this way.

[spencerrscardigans]

─── ･ ｡ﾟ☆: *.☽ .* :☆ﾟ. ───

character lists (bolded characters are characters i will likely write the most for)

marvel

↳ peter parker (mainly tom holland and andrew garfield’s spider-man’s)

↳ pietro maximoff

↳ bucky barnes

↳ matt murdock

↳ stephen strange

↳ natasha romanoff

↳ loki

↳ bruce banner

↳ tony stark

the walking dead

↳ daryl dixon

↳ rick grimes

↳ maggie greene/rhee

↳ glenn rhee

↳ rosita espinosa

the last of us

↳ joel miller

↳ ellie williams

harry potter

↳ fred weasley

↳ george weasley

↳ remus lupin

↳ sirius black

↳ james potter

criminal minds

↳ spencer reid

↳ aaron hotchner

↳ emily prentiss

↳ derek morgan

stranger things

↳ steve harrington

↳ eddie munson

↳ robin buckly

others

↳ jake peralta

[spencerrscardigans]

─── ･ ｡ﾟ☆: *.☽ .* :☆ﾟ. ───

requesting [requests: open]

before you request:

if you are planning on leaving a request, beforehand, firstly check if my requests are open. it will state so here, on my main navigation page, and the page for characters i write for.

with that being said, also please check and read over this page, my blog rules, and my character list before leaving a request!

please try to be specific in your requests if it pertains to the content/characters/topics, and if you do not leave specific details, expect that i will substitute or decide so for myself as i need something to work with.

be patient! i have a life, and things going on so i may need to take breaks or may be unable to respond to certain requests, or it may take me some time to get back to you, so please be mindful that i have a lot going on in my life as well.

things i will not/am hesitant to write for:

↳ smut — as of right now, i am not comfortable writing explicit nsfw content. i am open to suggestive content, but nothing explicit! i still am only just getting into writing, so this may change or broaden down the road, but as of right now i will not be writing any smut!

↳ real people, like actors for example. i will write for their characters, but no real people as i personally find that inappropriate and an invasion of privacy and boundaries

↳ explicit details pertaining to rape or assault, and if you do request something pertaining to this i will answer based off my assessed comfortability

↳ explicit abusive behaviours and/or cheating among character pairs, these topics may be mentioned as part of a characters past or can be relevant in my fics, however i will not write for these behaviours within my characters pairings.

↳ romanticizing of toxic behaviours or serious topics. i would like to spread representation of these issues, however i will not be romanticizing them!

↳ large age gaps, including no relationships between minors and adults, and if the characters are adults than nothing larger than 10 years, but even that’s pushing it

↳ intoxication. for both alcohol and drugs (minus maybe weed), i will not write a character that is in an intoxicated state, and would prefer to avoid the topics all together if possible, though i may include the topic if it is relevant in a characters past, but generally i would like to avoid the topic all together unless i feel comfortable

↳ pregnancy, i do not feel comfortable writing pregnant characters. i may be comfortable writing a character who has already had a child, but i am not comfortable writing about pregnancy in detail

↳ poly relationships, i personally am not comfortable writing pairings/relationships among more than 2 characters

things i will write for!

↳ i will be mainly writing for fem!readers, and maybe gn!reader if specified, but i mainly feel comfortable writing for fem!readers

↳ i may write original characters if it is a multi-chapter fic

↳ one shots, multi-chapter fics, blurbs/drabbles, imagines, and maybe even text/social media fics

↳ both romantic and platonic parings!

↳ suggestibility (innuendos, teasing or cutoffs) but no explicit smut

↳ as i stated in the category above, i will not be writing any blatantly abusive behaviours in my character pairs, however there may be some toxic behaviours or miscommunication to an extent for some angst, as no one is perfect, but when i do this, the characters won’t just get away with these things to keep it realistic

↳ i am a sucker for angst, hurt/comfort, and fluff, so expect to see a lot of this

↳ chronically ill, mentally ill, or generally a reader who is struggling (sick, injured) or experienced past trauma (not too in-depth for the trauma) as someone who is chronically ill, mentally ill, disabled, and has experienced trauma i personally enjoy seeing accurate/correct representation in fiction as it makes me feel seen/heard, however i do not tolerate any romanticizing of these issues. these are not things that you should want to experience, it sucks and i simply want to spread representation!

↳ prompts! sometimes i need a little creative boost, as well as prompts generally are pretty fun to write and a good way to explore writing

↳ similarly/kind of connected to the prompts, i also enjoy writing lyric/music based inspiration fics! i already have a lengthy list of lyrics (mainly taylor swift) to use as inspiration, so you can leave some ideas for that as well! either from your own interpretation or something for me to interpret for myself

↳ i may be open to writing crossovers however only if it actually is somewhat plausible or i’m able to make it somewhat realistic

[spencerrscardigans]

─── ･ ｡ﾟ☆: *.☽ .* :☆ﾟ. ───

blog rules

welcome to my blog! i wanted to make a little post going more over some rules that i have for my blog as i want this to be a safe space, so before interacting i strongly urge you to read this!

firstly, and most importantly, do not interact with my blog or leave comments if you coming to be discriminatory and rude. there is a vast difference between opinions vs hate, so you can share your opinions and i am open to discussions as long as they will not cause harm or disrespect to anyone.

feel free to come to my inbox or messages to chat! same goes for leaving requests, but only if it states that my requests are open. i have a post linked on my navigation page that goes more into detail about leaving requests! i can’t promise that i will get back to you, and it may take me awhile to respond, but i will try my hardest! i love chatting with, and hearing from people so please feel free to reach out!

this is (unless you disrespect my boundaries) a judgement free zone! my goal is to create a safe space where people are comfortable being themselves, so as long as you do not go against my boundaries or be disrespectful, there will be no judgment! in connection to my previous paragraph, i am also here if anyone needs to rant, as i will likely be doing a lot of that as well! just please be careful and leave trigger warnings if you will be talking about serious or potentially triggering topics.

i do post and share my experience with chronic illness and mental health related topics, so feel free to leave questions, just please do not ask any invasive/disrespectful questions!

please do not copy or take credit of my work! you can recommend or share my work but only if you give me full credit! i have spent my time and effort into my work, so please respect that!

[spencerrscardigans]

─── ･ ｡ﾟ☆: *.☽ .* :☆ﾟ. ───

blog introduction!

hello! finally, after a long time of wanting to, i finally decided to make a blog! as i am still planning and putting everything together, i thought that i may as well post an introduction post!

my main focus for this blog likely will be for writing some original work and mainly fanfic writing, talking about and analyzing literature (i may make a separate blog for this), and chronic illness/disability content!

my inspiration to create this came from my longtime longing to write and share my own work as i have been an avid reader, especially of fanfics, and i have many, many, ideas living in my head. i originally started planning out a few (a lot) of multi chapter stories, both fanfics and original work/ideas, and i had everything planned out thoroughly, however since i had never committed to writing something to that extent, i thought where best to start than with one-shots and short stories!

besides the writing, i also was inspired to post about and make content about chronic illness and disability as it is something that i live with and is a big part of my life, and when i first started my “journey” of learning how to live with these things, i felt very alone and craved to have somewhere where i could relate and feel less alone in my experiences, so my hope with this blog is to be a place and resource to do such a thing that i, and likely many others would seek out.

about the person behind the blog!

you can call me mae, and my pronouns are she/her! i am seventeen years old, and in the future, i would love to peruse research, with my main goal/dream being to go to medical school to become a doctor!

i am chronically ill, and have (unofficial diagnosis) hypermobile-ehlers danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and due to what we think was caused by prolonged physical pain and emotional trauma, i have developed central sensitization and fibromyalgia, which is a neurological disorder that essentially means my central nervous system amplifies and sends incorrect signals to my body.

i am neurodivergent, and have adhd, and i also highly suspect that i am autistic, however i am unable to get a diagnosis. i also struggle with mental illnesses, and have depression, anxiety, obsessive compulsive disorder, anorexia (in recovery!), and cptsd.

despite being sick, i have always been highly ambitious, and (when my health permits/permitted it) i have picked up many hobbies and interests! some of these hobbies/interests include sports, and i played soccer for years, did badminton at school for a little while, went to a basketball camp (which i did not like), and my current sport being riding horses, though i had to temporarily pause until my health allows it again, but when i can handle it i will definitely be getting back into riding! i have also picked up and attempted to learn a few instruments, some being with my schools band, and others i picked up on my own, including clarinet, saxophone (tried both tenor and alto, but preferred and more so stuck to tenor), piano, and guitar!

i also love reading, educating myself on pretty much anything i possibly can, but especially science related things, writing, poetry, baking, gardening, photography, knitting (attempting to) and crocheting, sewing, and would also love to get into pottery!

i am a huge animal lover! in my life, i have had hamsters, guinea pigs, a bunny, and dogs! and now currently i have 3 adorable rats, and i also have a cat who is my pride and joy lol. in the future if my lifestyle permits it, i would love to have more animals, and would also love to rescue and foster!

i love listening to music, with some (but not limited to) of my favourite artists being david bowie, the smiths, hozier, taylor swift, phoebe bridgers, tv girl, mac demarco, mitski, and big thief! (inspo for some of my writing)

some of my favourite tv shows, movies, books and general fandoms i am in include (in no particular order) the walking dead, fleabag, all the bright places, criminal minds, bones, the last of us, dead poets society, harry potter, house, greys anatomy, and stranger things.

plans i have for my writing

i have many, many, writing ideas, especially for fanfics and one-shots (will often include themes of chronic illness and mental health), and some of (but not limited to) the characters i will be writing (platonic and romantic) for include:

(for marvel) peter parker (mainly tom holland and andrew garfield’s spider-man’s), pietro maximoff, bucky barnes, matt murdock, stephen strange, natasha romanoff, loki, bruce banner, and tony stark

(for twd) daryl dixon, rick grimes, maggie greene/rhee, glenn rhee, carl grimes, rosita espinosa

(for tlou) joel miller, ellie williams

(for criminal minds) spencer reid, aaron hotchner, emily prentiss, derek morgan

(for harry potter) fred and george weasley, remus lupin, sirius black, james potter

(stranger things) steve harrington, eddie munson, robin buckly

there is probably many characters missing from my list above, which is why i will be creating a separate post that will go more into detail about the characters i plan on writing for. i will also be creating a separate post that goes more in detail about the types of writing that i will do, and the types that i will not write, and will include a link for requests.

as my writing/blog progresses, i will be making a navigation post that will have links to important information like my blog rules, masterlists and etcetera, but i thought that i might as well include some info here so you know what to expect!

[spencerrscardigans]

when the disability is actually disabling :(