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newhologram · 5 years ago

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New’s Ketamine Diary

5.13.2020 Infusion #1 K Debut

The doctor started with some trigger point injections in my neck. I’m not usually bothered much by needles but lately I’ve been getting poked a lot and my cervical spine has been horrible all week so I didn’t want anyone touching it. 🤕I was sweating while they used an ultrasound on my neck for accuracy. Even though doc gave me something to help me relax, I whined high-pitched the entire time. The nurse said, “Sorry, honey” and the doctor said, “There, almost done. You should be very proud, you’re doing very well.” Got it over with very quickly while the nurse cold-sprayed the hell out of each injection site. This is a consideration I haven’t seen from most other doctors: someone already in pain doesn’t need to be tortured more. Be efficient and make it more comfortable.

Time for the infusion. They said about 40 minutes with a 30 minute cool-down. I was set up in a small room with a comfy reclining armchair, an iPad with lots of relaxing music/soundscapes, and a pretty color-changing lamp on the desk. The nurses also gave me a blanket and sleep-mask. On the wall were two medical posters (spine and hand) and draped over the window was a painting of a view through an open window to a soft and sunny beach. They hooked me up and told me they would be checking in on me. Before he left, the doctor put his hands in prayer and said, “Have a nice trip!” I could tell he was smiling under his protective mask.

I put on some spacey trance music and waited. After a little while I felt relaxed and pleasantly tingly in my legs. A bit after that I had that slight double-vision you get after surgery. The first time a nurse checked on me, it took effort to talk. I was floaty and peaceful and it felt like soft waves of clouds were rolling up and down my nervous system.

I don’t know how accurate my sense of time is for today but I think after about 20 minutes I started “tripping”. At one point the doorbell was the most amazing sound. The color-changing lamp was great to look at, but it wasn’t just pretty. Each color presented itself to me as an individual and distinct entity with its own personality and I was delighted every time I met a new color. It was like a new conversation every color and I said “thank you” every time. The soft pink was named Radha. 🌸 About 30 minutes in, I escaped this particular human identity. It wasn’t that I “forgot” who I was. It was more that I “remembered” who I am. I felt so distinctly me, not me the person, but me the conscious awareness in this timeline focused into the nervous system of this human. And when I remembered my body, it was like rediscovering an advanced technology. I moved my arm so easily and thought, “Wow, a real human robot. This is the original technology.” Remembering my body made me remember this human identity I’ve been enrolled in for the past 30 years. It was like reading the character bios in the manual of a newly opened video game. Reading about this person was like meeting someone new. I was fascinated by the idea of Ashley and Maxwell and couldn’t believe they were real physical beings and that I get to play the role of their mother. I tried to text with friends to keep them updated, which resulted in uncontrollable snort-laughing that I’m sure the nurses enjoyed hearing. 😂 But the strangest thing was that I would hear myself laughing for a good 5 seconds before I realized it was coming from my body and I was like ???????? and somehow the idea of this involuntary noise coming out of me made it funnier.

Eventually my timer went off and a nurse came in to turn off the pump and start the cooldown. I had no idea and thought I’d triggered the alarm by trying to touch the colorful lamp. I told the nurse sheepishly, “I just wanted to touch it.”

As I came down, I digested the experience and stretched a lot in the chair. When I was finally ready to go, the nurse took out the IV and the doctor came to talk to me about the experience. We talked about differentiating the kinds of pain I have and what I was feeling. Pretty much the only pain I have right now is the radiating soreness in my neck/shoulder/arms that comes after those gnarly trigger point injections, which is expected. Maybe a teeny bit of nerve pain for that same reason. I don’t feel my usual all-over fibro pain or my intense shocking/burning/torture spine/neck/face/head pains that make me the most miserable. I don’t feel overwhelming fatigue. I feel relaxed and could definitely sleep but I also feel a very clear clean energy. My vision was sharper after the infusion as well. I’m even able to squat down and reach something or walk up the stairs without my legs trembling under me. I was standing up and bouncing while talking to the doctor.

He asked if it was scary and it wasn’t at all, it was very peaceful and enjoyable. He said, “You’ve made me so happy today that I am ‘tripping’ with you!” and gave me a social distance fist bump. I think maybe because I’ve been meditating more seriously for 6 years now and have experience with “out of body” sensations from narcolepsy that the whole part about leaving my human identity behind wasn’t as surprising to me as it might be for someone who is very new to this perspective of life. Which is why this treatment is so effective for mental illness/ PTSD as well as chronic pain, it really offers a whole new perspective. Even almost 8 hours later I feel very very peaceful.

It was a great first infusion! I hope to see even more good results the second time. Typically treatment starts out with 6 infusions over 2-3 weeks but my doctor is trying to be careful with the insurance so he’s going to try to ease into it and get me back every 2 weeks. He said to me, “You’re too young for so much illness, you’re a kid, you’re as young as my youngest. I want you to experience your youth and get out there and take over the world. I know this can make such a difference in your life.”

So, keeping my fingers crossed for more infusions soon and incredibly grateful for the chance to do this treatment that I’ve been interested in for years. I just knew it was something I had to give a shot, especially since I’d already tried everything else the medical system had to offer. So awesome.

#ketamine #ketamine infusion #ketamine infusion therapy #chronic pain #chronic illness #teku #personal #new's ketamine diary

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ecto-american · 5 years ago

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1 and 6 for the writer asks!

writer questions

1. Favorite place to write.

I basically always write in the sameplace. I have a desktop computer, so I'm almost always sitting at mydesk when I write.

6. Favorite character you ever created.

For this, I'm going to stick withstrictly phandom OCs, and so my answer for this is a close tiebetween my Vlad's son OC, Victor Masters, and another halfa Galileo“Leo” Simon. Because I really like keeping the idea of halfasbeing “rare and unique” I rarely make halfa OCs, and these twoare really my only two true halfa OCs. Both are natural halfas,meaning that they were born being half-ghost. I'll describe themunder the cut, and I will warn you that there's some mentions ofdeath and torture involving them.

Victor was basically born to Vlad and awoman named Alyssa, who was a nurse that cared for Vlad in thehospital as he recovered from ecto-acne. They got married, and shegot pregnant with Victor. Unfortunately, Victor's half-ghostnessbasically caused her to get deadly ecto-posioning while she waspregnant with him. She decided to go into labor early in hopes ofsaving him, but she died soon after he was born, and Victor was borntwo months early.

His entire life, Victor has been verychronically ill due to being half ghost and being born early. He hasasthma, chronic fatigue syndrome, narcolepsy, weakened immune system,and is prone to breaking out into hives and swelling. While intheory, he's powerful, he just cannot ever fully reach his true powerlevel. He cannot properly regenerate his own ecto-energy, and so hisghost half basically feeds on his human half for energy. This causeshis human half to view his ghost half as a virus/infection. Think ofit as having a transplanted organ your body constantly is rejecting.

Other than that, Victor was created tobe a better FOIL for Danny, as his age rests smack in between Dannyand Jazz at 15 when Danny is 14 and Jazz is 16. However, he's in thesame grade as Danny due to being held back a year as a result ofbeing sick. He does go to a fancy rich kid school, but is mostly athome being homeschooled by a private tutor (The Ghostwriter). Victoris meant to be one of Jazz's best friends, and he's also gay andcrushes on Danny. Whether or not Danny returns the feelings is storydependent. Victor's not really “evil” like his dad. He primarilyjust wants to exist and live his life. He has a white main coon UNITof a cat named Princess.

As for Leo, he was born to Dora and ahuman father in the early 80s. His dad was a nerdy computer scienceengineer who was absolutely fascinating to Dora. They quickly fell inlove and had Leo with no complications. His dad died, committingsuicide with the thought that he'd become a ghost. He did not. SinceLeo was a wedlock baby, Aragon did not allow Dora to keep him, and soshe basically gave him up for adoption to his dad's parents. Hisgrandparents had no clue about the truth to Dora, and they raised himas a normal kid in a very small town of like 200 people in the south.

Leo discovered that he had ghost powerswhen he was about 10, but he kept it a secret from his parents.Having no knowledge of ghosts, he assumed he was basically a mutantlike in comic books (Leo has no ghost form, only the powers). As hegrew older and bolder, he used his powers more openly. Nobody reallycared, as it was basic small town, and that was just Leo. He grew up,married his high school sweetheart, and he became a police officer.He openly used his powers on the job within the law to catch the badguys and bring them to justice.

Meanwhile, as he was growing up, Doranever abandoned him. She kept an eye on him and left him presents andnotes, but never told him the truth. If you've ever seen Futurama, toavoid spoilers, but it's exactly like that.

After a while, a knock on the door camefrom the Guys in White accusing him of being half ghost. Leo toldthem ghosts don't exist, and they prompted arrested him for beinghalf ghost. For the next twenty years, he and his wife were basicallyheld captive and forced to almost work as double agents to catchghosts. Leo was openly experimented on and dissected several times(he has a permanent Y shaped incision on his chest from it all). Heeventually gets the deal of a lifetime: we know Danny Phantom's halfghost. If you turn him into us and find out who he is, we'll let youand your wife walk free.

#asks #ask nick #victor masters #leo simon #dp ocs #kinglazrus

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bettsfic · 5 years ago

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sleep!anon: (1) god it feels so good to have someone understand. i only realised at about 17 that i must have spent half of my life being tired and not knowing it. after that, i started sleeping more, and after some self tests, i realised about 10.5 hours seems to be the sweet spot (9.5-10 i can get by, but over time, it gets worse), which was perfectly feasible at school/uni, but 9-5 is more troublesome. i sleep about 9.5-10 hours, nap on the train over (about 20 mins)

(2) and even then, still have to catch usually at least one (sometimes more) discreet 10 minute nap at some point during work. like you, i usually REALLY need it around 3-4PM. and i hate feeling tired at work because then every mistake i make, i'm like is this me? or is this just bc i'm so f*cking tired? like, sometimes when i'm trying to nap at work, i can feel how tired i am and knowing i'm not alseep makes me want to cry. i genuinely feel like i'm halfway to having a breakdown sometimes

(3) i'm not surprised that feeling anxious/stressed means you need more sleep - it's really taxing mentally and physically to be stressed. now you've said that, i wonder if mine has been getting worse recently because of the stress/anxiety i have over mistakes and how tired i am etc... GOD don't get me started on people who call you lazy. i think some folks think it's a joke, haha ur so lazy lol, but i would give ANYTHING to be able to live like them. to feel rested after 7-9 hours.

(4, final) i can't even comprehend what life like that would be like. imagine not having to regiment my bedtime so strictly, actually waking up in the morning and not wanting to d*e. like, my life revolves around controlling my sleep, and then people turn around and call me lazy? do not like. anyway, sorry to go off, just feels so good to talk to someone who understands! in any case, how did you go about doing a sleep study? i've thought about it but not sure if it's worth it?

i’m not sure if you’ve considered it, but you might have sleep apnea. it’s the most common sleep disorder and it sounds like you have a lot of the symptoms. like if you’re asphyxiating in your sleep, you’re not hitting REM, so you need to sleep longer. if you do a sleep study, the apnea tests come first. for me, they gave me a take-home test which is cheapest and easiest, and i tested negative for that, but the home test has a lot of false negatives (but not false positives), so they had me come in for an overnight stay. i tested negative for that, and the narcolepsy test is during the day.

that’s it, that’s all they can test for. narcolepsy, delayed phase sleep, and hypersomnia all use the same test and all have virtually the same treatment. if you have apnea, you sleep with this machine thing on your face. a friend of mine uses it and it completely changed his life. for narcolepsy et al, the medicine is called nuvigil, which i’ve never taken because it was way too expensive, so my doctor put me on adderall instead. which, let me tell you, adderall was awful for me. i was operating at 200% and convincing myself it was my “true” 100% and basically my entire life had been a lie. but that wasn’t real at all.

i’m going to caveat here that my sleep doctor was absolute garbage, totally incompetent, and i nearly sued him, so i’m hoping you’ll have a better experience. you usually need a referral from your GP, so i’d start there. hopefully you’ll get a newer tech test so you don’t have to go through what i went through. apparently you can do most of it from home now. the sleep study will be totally worth it if you test positive for apnea, and even more worth it to find treatment for narcolepsy et al, and most worth it to take it to your HR people and ask for disability accommodations.

another thing to check for is carbon monoxide. i had a dude inspect my chimney at home and he said i’ve been slowly carbon monoxide poisoned for years now and i think that’s maybe part of my fatigue issue, because the *day* i moved to my grandma’s house, my sleep reverted to something sustainable. like i got tired at 10pm, fell asleep by 11, and woke up naturally at 8am. and it’s been like that now for a month (exception being EDS [excessive daytime sleepiness] due to aforementioned stress). chronic fatigue syndrome may also be a thing. so a good sleep doctor will take you through all of this and hopefully find you an effective treatment. oh! and idk how old you are, but if you’re under 25, there is a chance you will grow out of it, which sounds ridiculous, but developmentally your brain doesn’t get steady sleep-wise until then. THAT SAID, even if you are under 25, you’re unable to adapt to the environment you’re in, so you still need accommodations.

also keep in mind -- disordered sleep is extremely normalized, which is why the term “lazy” is tossed around so much. nearly all young people have disordered sleep because they’re forced into adult schedules. and most millennials have disordered sleep because of growing up with disordered sleep, and now because of a constant invasion of blue light late at night. i think i only know one person my age who doesn’t have disordered sleep, and she’s a middle school teacher. everyone else i know is delayed phasic, polyphasic, or chronically fatigued. it’s a serious, horrible issue that causes so much anxiety and depression, like you know how it feels to lay in bed at night, freaking out about the following day or all the stupid shit you said? that’s fatigue!brain. i’ve basically learned not to listen to any of my own thoughts between the hours of midnight and 8am. they’re all lies.

okay this is getting long. i do hope you find help and good treatment. i’ve heard good things about nuvigil if your insurance will cover it, and if not, i hope your workplace will allow you accommodations so you can nap in your car in the afternoon, have a flexible schedule/delayed start time, and/or work from home.

#narcolepsy #Anonymous

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ibelieveinahappilyeverafter · 5 years ago

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To Land On Your Feet - Chapter 10

Hello everybody! So sorry for this late, late, LATE chapter, but I'm currently updating from the only cabin with Wi-Fi at this campsite I'm at in the middle of the woods! I'm outside of cell service range, too, and this is the only cabin with internet connection and it's very dark outside and I'm very scared, but you guys deserve a chapter!

The lights shut off in the cabin, a minute ago, so I'm even more frightened, but hopefully I'll be able to get back to my cabin and pretend I'm not about to die at any moment. Anyways, sorry again for the wait, and I hope you enjoy this chapter!

Also, consider donating $3 a month to my Patreon and getting access to unpublished drabbles and the Google Doc where I write this story; meaning you could see chapters and notes days or even weeks in advance.

Enjoy!

Click here to read the work on Archive Of Our Own.

⍣ I have a Patreon! Support me?⍣ ☪ I have a tip jar! Buy me a coffee?☪

Summary: Aizawa Shouta had a good life. He was a happily married pro-hero teacher, had two cats that loved to make his life difficult, and soon, if things went well, he would have Shinsou Hitoshi as a son. Thanks to an unexpected attack by a man with the League of Villains, though, Shouta is turned into a cat. While he had a fondness for cats, that never meant he wanted to be one, especially when no one seems to recognize him and his friends and family are trying to find him when he’s right there.

He had been planning to find a way to change back, but instead he ends up following Shinsou Hitoshi to the foster home he lives in after hearing some worrying information from the teen himself. Shouta himself was guilty of venting his frustrations to cats, but hearing that Hitoshi would be locked outside in the cold if he was late getting home was just another clue among countless that something was wrong. He has to get back to normal, but he’d be a poor hero and a shit father-to-be if he didn’t follow the kid and make sure he was okay.

Besides, quirks like this usually had a time limit. Right?

<<First Chapter>> <<Previous Chapter>> <<Next Chapter>>

Chapter Ten

Feeling awareness start to filter back in slowly and sluggishly, Shouta tried to remember what had led up to him falling asleep on what he assumed was a gym floor as he struggled to open his eyes and clear his blurry vision. When some of it didn’t clear, he mentally sighed as he remembered his predicament. He never thought it would happen, but he was starting to get tired of cats, or at least, he was getting tired of being one.

Staggering to his feet, Shouta blinked and shook his head until he was able to focus in on where Hitoshi and Hizashi were sparring against each other, Hizashi calling out useful tips and reminders with laughter as Hitoshi did his best to knock the man over. Shouta supposed that explained partially while he was asleep on the gym floor, but not fully considering he last remembered falling asleep in Hizashi’s chair in the teacher’s lounge when it was still morning.

Taking a moment to do a few stretches as best he could, Shouta let the two continue to spar, half wondering how the noise hadn’t woken him up earlier. Hizashi had never been one for quiet and, as Shouta had learned, Hitoshi was just as bad. Had he really been that tired?

‘Did I really sleep the whole day?’ Shouta felt a cold grip around his heart at the thought. It was one thing for cats to sleep a lot, but that was excessive, even by his standards. He had near wasted the entire day by sleeping, which was just another worry to add onto the pile, it seemed.

It wasn’t like he could take his medication in this form, but were his human illnesses affecting him as a cat? He hadn’t noticed any problems with his eyes or even his dry eye, and his pain levels had been better than usual, but with a transformation like this, how would chronic fatigue and narcolepsy transfer over? With luck, the transformation would end before that became too much of a worry.

‘At least I’m with you two instead of the League of Villains,’ Shouta thought to himself, looking at where Hitoshi had completely tired himself out and was now sucking on one of Shouta’s nutrient packs like it was the first thing he had eaten all day. He looked nervous, though, and that never meant good things.

“Ah, looks like your mysterious friend is awake,” Hizashi said, sitting down on the gym floor next to where Hitoshi was collapsed, Hizashi looking tired himself. “You’ve been asleep since morning, cat whose name Hitoshi refuses to tell me.”

“Hey,” Hitoshi frowned, dragging Shouta into his lap as soon as Shouta was close enough. “I told you that he doesn’t have a name.” Ah, right. ‘Eraser.’ Jeez, the kid looked like he was trying to lead up to a question he didn’t know how to ask. Luckily, though, Hizashi was better at reading people than even Shouta was.

“Hm, well, I’ll tell you what!” Hizashi fiddled with his own pouch, giving a wrinkle of his nose as he eyed the nutrition label. Shouta was unamused considering the man’s own energy drinks were far worse. “We can either sit here and I can figure out the embarrassing name you gave this poor, defenseless cat-”

“Hey!” Hitoshi complained at the same time as Shouta, Hizashi looking entirely unrepentant as he grinned down at them.

As always, however, the smile softened, and Hizashi continued with a calmer tone. “Or, instead, you can tell me what’s on your mind to cause such a depressing expression.”

Hitoshi’s expression went from vaguely amused to closed off and blank within a heartbeat, the teen looking away and going utterly silent. Whereas Shouta would typically wait Hitoshi out until he felt comfortable talking about whatever was on his mind, Hizashi had always been one for the more… opposite approach.

“Aw, boo, silence wasn’t an option,” Hizashi whined dramatically, throwing himself to the floor and covering his face with an arm. “Ignored by my own child! How cruel a world!”

‘You’re going to embarrass him in every English class you have with him the second you can, aren’t you?’ Shouta thought to himself, looking up at Hitoshi and wishing he could laugh as he saw he was flushed red and looked to be as shocked as he was delighted.

“Your child, huh?” The words were too soft for Hizashi to hear, but Shouta heard them crystal clear. It was nice to know that Hitoshi felt the same way about them as they felt about him. “I do have something I want to ask you, Mic-sensei.”

“He speaks!” Hizashi exclaimed, getting back up with a grunt and a dramatic grumble about getting old. “And hey, hey, I told you that you can just call me by Hizashi or even Yamada if that’s better!”

Hitoshi gave a small nod, quite serious as he responded with, “Of course, Mic-sensei.” The disgruntled expression had Shouta giving his best laugh, vaguely curious when the sound came out as a purr. Ah, well, at least it served to have Hitoshi relaxed even further.

“Come on, then, herolet, what’s the question you have for me?” Hizashi was as open and curious as he always was with children, smile reassuring and posture relaxed and open. He really was amazing with kids.

“It…” Hitoshi lost his voice for a moment, staring down at Shouta and slowly and methodically combing his fingers through thick fur. At least Jelly and Snowball would be able to calm him down when Hitoshi moved in with them. “I have a question, but I think talking about it might make you sad.”

Ah. The open case of Shouta being declared missing in action. Jeez, no wonder the two of them were both so worried about it all. While Shouta knew that he was safe, Hitoshi and Hizashi had no idea where he was. There was little chance, too, of them realizing the new cat following them around was Shouta.

“That doesn’t mean you still can’t ask,” Hizashi said softly, coaxing Hitoshi into looking back up at him before giving a tense, strained smile. “There was an update on his case. We think that the League of Villains might be involved with the situation.”

“The… That’s the group that attacked USJ, right?” Hitoshi’s voice near trembled and Shouta could sense the anxiety that was beginning to build. “The group that almost killed him-”

‘Hey, it’d take more than a bunch of angry kids to take me out,’ Shouta complained, nudging at Hitoshi and trying to break him out of his thoughts. It seemed to help, but it was even better when Hizashi managed to hook an arm around Hitoshi and guide the teen to lean against him, Hitoshi doing so at once. He really had come such a long way from that kid who flinched when someone got too close.

“Easy, Hitoshi, easy,” Hizashi crooned, voice soft and soothing as he rubbed at Hitoshi’s back. “It’s going to be okay, herolet, it’d take more than a bunch of angry kids to take Shouta out.” Ah, Hizashi really did know him well.

Hitoshi gave a jerky nod as he clutched onto Shouta even tighter, head tilted down so Hizashi wouldn’t see the near hopeless expression on his face. Shouta had a feeling his husband saw anyways, though, since the man was now rooting around his jacket pocket before pushing something over Hitoshi’s head to drop against his chest.

Shouta was just as surprised as Hitoshi seemed to be at the familiar yellow goggles that were bright even with his new vision. Hitoshi, who had admitted through pained embarrassment his admiration for his favorite pro hero Eraserhead, raised a hand to touch the goggles slowly before looking up at Hizashi with wide eyes.

“These were left behind where he was last seen,” Hizashi explained, careful, calm smile given out as he adjusted the strap to better fit. “I shouldn’t be surprised. Shouta’s always forgetting where he puts them, you know!”

‘I’m not that bad,’ Shouta complained to himself, feeling tension leaking out of him at Hizashi’s calm voice and Hitoshi’s almost awed expression.

“They’re durable, though,” Hizashi continued, watching with nothing but fondness as Hitoshi started fiddling with the goggles. Shouta was reminded of his own self when he first started wearing them as part of his hero costume; no doubt Hizashi was, as well. “They’ve been through a lot. Ah, my Shouta is so stubborn, herolet! He’ll always insist on getting them repaired instead of just ordering new ones. These ones even went through USJ and came out alright in the end!” Hizashi lowered his voice to a near whisper, tugging Hitoshi into another loose hug. “Just like Shouta, right?”

It was visible at how the tension drained out of Hitoshi, the teen back to leaning against Hizashi as he took a steady few breaths. It was heartbreaking, but Hitoshi’s anxiety and nerves were much like Hizashi’s. Each of them had the tendency to get wrapped up in their own heads, thoughts and worries echoing around and growing louder with each passing second.

“He’s alright,” Hitoshi finally said, looking to have a bit more control of himself. “I mean, there was the Tunguska Incident where he went missing for five days and then when they found him it was because he called in police in order to come break up the illegal quirk testing facility he had been kidnapped by and took apart himself!”

Oh, right. Jeez, that was almost a decade ago back when he was still making the transition from sidekick to an actual pro. Hizashi seemed taken aback by the spiel, but he recovered quickly, face lighting up as he near shouted, “Ah, herolet, you’re so knowledgeable! I’m surprised, that whole thing was kept under wraps rather well, after it was all dealt with. Ah, let’s see, that was nine years ago… You would have been six, right?”

Hitoshi flushed, no doubt embarrassed as he fumbled for an excuse before hiding his face behind his hands, Hizashi bursting into laughter. Shouta couldn’t help but to feel a bit of amusement himself.

“Hey, hey, it’s okay, Hitoshi,” Hizashi giggled, looking so much better than he had over the last few days as he hugged Hitoshi tightly. “It’s alright. You want to know why? It’s because now Shouta has to come back. Good things come in threes, after all, and now Shouta has three things to come back for!”

“Three?” Hitoshi frowned, looking up at Hizashi with confusion while Shouta contemplated scratching his husband because he knew where Hizashi was going and it was going to be embarrassing for all of them.

As always, though, Hizashi showed no sign of any embarrassment, instead chirping out a delighted, “Of course! We already know he has me, but that’s because he knows I’ll find him and lecture him if he doesn’t come back,” Hizashi snickered, Shouta seeing the longing in Hizashi’s eyes as one of his hands absently touched the ring hidden under his gloves.

“I’m assuming one of those things are these goggles,” Hitoshi continued, tugging at them again and giving a small smile. “You said they were important to him, right? And they’ve been through a lot? He’ll probably want them back.”

“Exactly! But, the third and most important reason he has to come back…” Hizashi trailed off, hesitating for a moment before smiling down at Hitoshi and whispering a soft, “He’ll come back for you.”

‘Well, you’re not wrong,’ Shouta mused to himself, watching as Hizashi panicked and floundered as Hitoshi burst into tears, looking emotionally overwhelmed in what Shouta hoped was a good way. ‘Jeez, Hizashi, just hug him.’

“Hey, hey, it’s okay,” Hizashi hushed, pulling Hitoshi into his lap and hugging him tightly, Shouta squished between them but unable to bring himself to be upset about it. “It’s alright, Hitoshi, it’s okay. Shouta will come back and he’ll probably lecture us about being so worried over him in the first place, right? He’s fine, Hitoshi, I promise, he’ll be back and everything will be fine.”

The calming words, whispered softly, seemed to slowly soothed Hitoshi, Shouta unsurprised when the teen seemed exhausted once all his tears were gone. Considering the stress he was under and the insomnia that he was plagued with at his home, Shouta couldn’t blame him for falling asleep. Hizashi, at least, supported him easily, playing with Hitoshi’s hair and smiling down at him with an expression that was much more tired than it had been before.

“Ah, looks like it’s just you and me, suspiciously nameless cat,” Hizashi chuckled, Shouta not even bothering to try and get his attention when it was all still on Hitoshi. “Judging by how tightly he’s still holding you, it looks like you’ve really made an impact on him.”

‘You sell yourself far too short, Sunshine,’ Shouta frowned to himself, shifting so he was able to press against Hizashi more, managing to give a quiet purr.

“Oh, you’re a friendly cat, aren’t you!” Hizashi kept his voice low even with all his excitement, fingers skimming along Shouta’s neck and making him close his eyes at once. “You know, our house is pretty big, and my husband would never argue against another cat. If you’re really stuck on sticking by Hitoshi’s side, I think you might fit in well with us.”

Shouta so, so wished he could laugh, pressing himself more into Hizashi’s touch as he thought to himself, ‘Aren’t you the one who��s always complaining about the strays I bring home?’

Hizashi sighed, attention drifting back to Hitoshi. Whatever paranoia or suspicions Hizashi had about him, they seemed to be gone now that he was focused on Hitoshi.

“You know, suspiciously nameless cat, I… I always wanted to adopt. I always wanted to adopt so badly.”

‘What?’ Shouta shot up at once, staring at Hizashi and trying to understand what he was saying. ‘You’ve never mentioned adoption before Hitoshi.’ At least, not that Shouta was aware of.

“Shouta, my husband, he’s always so prickly about it, but you can tell he loves the kids he helps. He’s a homeroom teacher for a reason, you know. Aah, kitty cat, Shouta is going to be such a good father.” Briefly, Shouta was thankful he was a cat, if only so Hizashi would never see his embarrassment. “I never worried about Shouta wanting to one day have kids, and I love the idea of us having a family; of us having children of our own. Of us having kids like Hitoshi.”

Hizashi ran a hand through Hitoshi’s hair again, the teen relaxed and still lost in an exhausted sleep against him. Hizashi gave a wry smile, continuing with a soft, nearly whispered, “I love the idea of it, but what if I ruin it?”

Shouta felt his heart drop. He knew how well Hizashi could hide worries from him, and this was still a subject they were only just starting to get comfortable talking about, and yet it still felt like Shouta had failed for never seeing how worried Hizashi truly was.

“There are still some days I slip with my quirk, you know. Not as often, anymore, but it only takes one bad day, doesn’t it? If I were to ever hurt kids- If I were to ever hurt my kids… Being a pro hero is dangerous enough as it is, and there’s a reason a lot of pros don’t have children until they’re settled or retired or no longer on the front lines, but… Do you think it’s selfish to still want to be a father? To want to be Hitoshi’s father?”

Shouta was unable to respond in all ways, staring up at Hizashi and feeling nothing short of stunned. How long had Hizashi been keeping this to himself? How long had he been scared and felt like he couldn’t talk about it?

“Ah, kitty cat, I’m such a coward,” Hizashi whispered, Shouta burrowing close to him and trying to purr as loud as he could, careful to not let his claws dig into Hizashi no matter how much he just wanted to hold him. “How do you do it, hm? To land on your feet and just keep going… I’m envious.”

He had to figure this out tomorrow. The quirk or curse or whatever it was that he was trapped in, he had to figure it out and let Hizashi know who he was and waiting for it to wear off was no longer any sort of option.

Shouta would spend one more night with Hitoshi to make sure he was okay, to be there to intervene if things turned wrong, because it only took once, but then he would make sure that Hizashi knew who he was. He needed to make sure they knew that he was right here and still keeping an eye on them.

He wasn’t sure how he would get Hitoshi to his and Hizashi’s apartment, but if nothing else he could steal the goggles and have Hitoshi follow him. It would be troublesome, but it would be effective.

‘Don’t worry, Sunshine,’ Shouta purred softly, leaning up to press his nose against Hizashi’s cheek. ‘I promise that this will all be over soon.’ He would make sure of it.

#bnha #boku no hero academia #mha #my hero academia #erasermic #to land on your feet

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abalonetea · 5 years ago

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So I worked out what Zazu has in terms of disability for my story which is really good because it's been on my mind. He suffers from: Chronic Fatigue Syndrome. Yup. It does hinder his work abilities but he doesn't let that get to him. Also, happy Friday!

!!!! hey I have that!!!! which is just! so cool! you never see things like that in fiction! I already adored Zazu, and I think that’s such an interesting disability to work on him having!

Fig has narcolepsy, which has been difficult to deal with in regards to his job in the mafia, but he’s making it work! the fact that his brother’s the boss helps out a lot!

#wip the business #disability pride month #fact swap

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sirfrogsworth · 7 years ago

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Fatigue and Disbelief: Part 3 “The Grandma Paradox”

I love my grandma, but when you combine her age, the philosophies of her generation, her poor understanding of modern medicine, and her general grandma-ness... having an invisible illness can make a relationship with her complicated. She’s in her 90s now, and things are much better than they were, but 18 years ago when this all started, dealing with her grandma shenanigans could add to my exhaustion.

What I’m going to describe doesn’t necessarily have to be a grandma. Though it often is. It can be anyone who you love... a person that cares for you very much... and despite their best intentions, the way they deal with your chronic condition may drive you absolutely bonkers. I think most folks with similar circumstances have a person like this in their life.

I call it The Grandma Paradox. You love her. She exasperates you. And your brain has trouble resolving those two truths. It’s like throwing two angry cats in a bag and then placing that bag inside your brain.

Some of what I’m going to describe is a composite of a few people. A few are experiences I don’t remember perfectly due to shock therapy. And some are details that might be borrowed from spoonie friends and their families. I’d say about 80% of this describes actual experiences with my actual grandma. It was just easier to put all of this under the umbrella of a singular grandma.

Whenever I talk to fellow spoonies and bring up The Grandma Paradox, they immediately nod their head as if they already know what I’m going to say. I want to make it clear this is not me complaining exactly. It’s complicated. The Grandma Paradox is a bundle of various emotions intertwined like a rubber band ball. Grandmas can be wonderful and supportive. But they can also give you a giant headache if you have a chronic invisible illness that cannot be solved with chicken soup.

Meet my Grandma. Isn’t she cute?

Why do grandmas have to be so stinkin’ cute?

I guess the most frustrating part of The Grandma Paradox is having to repeat yourself. It’s not just that she forgets. It’s that she is unwilling to tell you when she doesn’t understand. I often have to reexplain my illness over and over because she is too polite to say she doesn’t get it. Each time she will nod and smile, signaling that the information has been processed and understood. This is grandma subterfuge. I will spend 10 minutes explaining how narcolepsy and Chronic Fatigue Syndrome are two separate illnesses, but they work together to make me more tired. *nod and smile* I explain that fatigue and sleepiness are two different things. I am not always sleepy, but I am always fatigued. *nod and smile* The discussion is going well, so I decide not to dumb it down too much. I continue to explain that narcolepsy prevents delta wave sleep, which is the most restful stage of sleep. CFS needs restful sleep to abate the worst symptoms. *nod and smile* In essence I have the worst combination of illnesses in the history of comorbidities and that’s why I couldn’t come to the family Christmas gathering. *nod and smile*

“So... you’re just sleepy? Have you tried one of those energy drinks? Your cousin Cody drinks those in the morning. I could ask him where he gets them. Probably at the gas station.”

Sometimes I will try to explain it again. And sometimes I acknowledge that I am just “sleepy” and live to fight another day.

Grandmas always want to be helpful. But when they aren’t sure how to help, that’s when the outside-the-box grandma ideas enter the situation. She might ask her doctor about me. And he’ll give her generic advice to relay back to me. I have to explain that I’ve already tried that and it didn’t work. She’ll tell her doctor what I said. He’ll mention something else. And it ends up being a weird game of medical telephone. “Have you tried limes? He mentioned limes.” After some thought... no Grandma, I don’t have Lyme Disease. Then she might resort to asking random people for suggestions. A pharmacist. A nurse. The checkout lady at the grocery store. She’ll pull a scrap of paper from the abyss that is her purse... “Have you tried this ginseng stuff? I think the Orientals use it.” Now I have to tell her that ginseng doesn’t help and dismantle deeply ingrained racist vocabulary.

Then there is the grandma research. She can’t use the internet, so she tries to find you information like an old school private eye. She cut out a few articles from the paper for me to read. They briefly mentioned fatigue and there was an expert interviewed. “Maybe you can call that doctor in the article.” He’s in another state. She called me and told me to turn on the AM radio. There was a news story about sleep conditions. I told her I didn’t have an AM radio. I suppose I could have gone to the garage and sat in the car or something. She had a TV from the 60s in her living room. It no longer had a picture, but the audio still worked. She would sit in there and listen to PBS. There was a special that talked about CFS and she made me promise to watch it when it aired again.

I appreciate that she is trying to find things that may help. But sifting through grandma research can be a tiresome chore. If you don’t look at it, she’ll ask why. If you do look at it and it is not helpful or relevant, she’ll ask why. “But that woman in the article got better.” I have to explain why my situation is different. It feels like you are breaking her heart every time her research doesn’t bear fruit.

I once made the mistake of telling my grandma I had depression as well. I didn’t have much choice since I was getting shock therapy as part of my treatment. First I had to rid her mind of the image of giant electrical arcs zapping my head.

Then I had to explain that depression wasn’t just me being sad. She told me I should be happy that I’m not a starving kid in Africa. I had to explain that even though others might be in worse situations, it doesn’t mean I am not struggling. I know her generation grew up with that attitude of “It could be worse.” But imagining others being miserable can not make someone happy. Often you feel worse because you’ve been imagining people suffer and that is no fun. I understand the logic of appreciating my privilege, but it can’t adjust serotonin levels.

Despite my best attempts to explain clinical depression, it was clear to her that I needed to be cheered up. So she sent my cousin to visit me and play guitar. Only she didn’t tell me she sent him. To me it seemed like he just showed up out of the blue. I thought he genuinely wanted to spend time with me. I deduced quickly he did not. Which ended up being more depressing.

She once invited me to the zoo because the zoo makes people less depressed. I suppose there is some truth to that, but it violates the part where I can’t really leave the house. Which I had to explain again. I try not to get frustrated. I keep repeating platitudes like, “Her heart is in the right place.” or “She means well.” or “At least she gives me money on holidays.”

Every time I accomplish an energetic activity she thinks I’m cured. I once did this big pin-up photoshoot with my friend Brittany. Grandma was at the house that day and saw me dressed in drag for one of the photos. That took some explaining. I was hopped up on Provigil (a narcolepsy stimulant) and I must have seemed all better to her. I think she even invited me to Easter. That photoshoot actually took about a month to recover from. I don’t regret it. I am proud of what I accomplished. I think the photos turned out really well. But it was a miserable month afterward and my grandma was quite confused about the status of my health.

I do love that my grandma is an optimist. She never gives up hope that I will get better. Though sometimes she sees improvement when it may not actually exist.

“Oh, you’ve lost so much weight!” (I gained 5 pounds.)

“You don’t look as tired as last time.” (I’m more tired, actually.)

“You seem much more talkative lately.” *incoherent mumbling*

I’m sure my condition is a great source of worry for her. Nothing has helped and my health continues to decline. She has a hard time accepting that so I think she tries to tell herself I am getting better. Her mind will interpret any change as a sign things are improving. It’s hard to see the disappointment on her face when you have to explain things are actually worse.

My grandma is a die hard Catholic. So naturally she turns to God for assistance. When her personal prayers weren’t doing the trick, she decided it was time to bring in the professionals.

Cue the silent pink nuns!

The Holy Spirit Adoration Sisters or “Pink Sisters” are basically Catholic prayer ninjas. Religious special forces. Elite hackers of the Holy Spirit. For a reasonable donation, you can hire them to use the power of prayer to solve whatever ails you. You pay, they pray.

Imagine a more spiritual A-Team that seeks divine intervention for their clients. Just lock them in a chapel with a rosary, bible, and welding torch and they will emerge with a custom prayer that no fool would dare pity.

“In 1972 a crack commando unit was sent to a nunnery by a religious tribunal for a sacrilege they didn't commit. These women promptly escaped from a maximum security confession booth to the Catholic underground. Today, still wanted by the archdiocese, they survive as rose-colored agents of the Holy Spirit. If you have a problem, if no one else can help, and if you can find them, maybe you can hire... the Pink Sisters.”

*A-Team theme music played on a pipe organ*

(All of the youngins reading this will just have to take my word that this was hilarious referential humor. Also, there is an actual video of a pregnant woman playing the A-team theme on a pipe organ.)

These quiet pink penguins do not take a vow of silence per se, but they only speak when absolutely necessary. Like when ordering pizza or during their nightly gab session filled with Pope gossip. (I heard Francis has a lengthy benediction.) They cannot leave the premises except for health issues. They can only visit family 3 times per year. To stay informed of world events they can listen to a taped radio news broadcast at the end of each day. They can watch pre-approved religious television programs on special viewing nights.

But when they are not having all that fun, they devote their lives exclusively to prayer.

They spend most of their days with their hands clasped, using their internal monologue to ask God to help people out. They specialize in communion with the Holy Ghost. So if you have an issue and your measly praying isn’t getting the job done, you can hire these pink people to professionally pray about your problems until they pester you no more.

Every Christmas my grandma would send me a postcard proving payment of Pink Sisters poking the Holy Spirit on my behalf.

I don’t have the heart to tell my grandma that I am no longer a believer. I think it helps her more than it does me. It’s a sweet gesture and it gives her comfort. Also, I think it proves that she does believe me, even if she doesn’t really understand the complexities of coexisting chronic conditions. If she didn’t think I was ill, she probably wouldn’t shell out the dough to hire elite prayer ninjas.

All in all, I feel very lucky my grandma is still around. She is in her 90s, but I have this strange feeling that she will outlive us all. Most of her antics eventually turn into amusing anecdotes once the frustration wears off. And it feels good to have someone care about you that much. Part of The Grandma Paradox is that you feel guilty if you complain. You feel bad that her well-intentioned actions ever made you frustrated. You just want to give her a big hug and say you’re sorry for writing a giant internet post about how difficult it is to deal with her sometimes. And then she’ll say something like, “Are you still sleepy? Have you tried juice? My neighbor at the home started drinking this special juice and she feels much better. I could find out where she gets the juice.”

I’m reminded of a song by The Beatles (who my grandma thought were sent by the devil) “All you need is love.”

Thanks for all the love, Grandma.

I think that wraps up my 3 part series about about fatigue, belief, and grandmas. I suppose I need some sort of conclusion to all of this.

Ummm...

Invisible illnesses are real. Please believe your local sick person. Give them the benefit of the doubt until they give you significant cause not to. (Like building a hospital set in their bedroom.) If they like hugs, give them lots of hugs. If they don’t like hugs, try an enthusiastic thumbs up in their general direction.

Avoid pity. Treat them as you would any loved one. Use kid gloves only when absolutely necessary. Don’t let them off the hook when they’re being jerks. But forgive them when they realize they were jerks. Listen to them when they need to vent. Give them love. Give them support. Give them patience. If you don’t understand their condition, ask questions. If they look tired of answering questions, try that hug thing instead. Do some online research (On reputable sites. Avoid anything that says wellness, natural remedy, or Goop.). The more you know, the more you can empathize. Don’t give them suggestions unless they ask for them. Unsolicited advice can be annoying as heck. They probably know more about their condition than some of their own doctors. Stay optimistic, but try not to blow sunshine directly up their hind-quarters. Stay hopeful, but realistic. Be observant. You can’t be a mind reader, but you can learn how to read them. You can learn behavior patterns and emotional cues. You can figure out when they need help, when they need attention, or when they need space.

And if you are compelled to hire nuns, try the pink ones.

#fatigue and belief

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princessmovieticket · 8 years ago

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Interveiw- Living with Chronic Illness

● When did you first notice/realized you had an illness and what/how did you notice first about the illness?

It was subltle. I watched myself decline through high school. I didn't know it was illness, I thought I was merely physically inept. You come up with explanations like this for yourself in these situations. The problem was I was not educated enough on the body to know that my issues were way out of the norm.

I would feel faint when standing for long periods of time, which seemed normal enough for a 110Lbs 17 year old girl. But then I began to have these episodes of extreme insomnia, which while also seemed normal enough, lead to episodes of the craziest hypersomnia you'd find in sleep speacialist's patients. (During my first appointment with a sleep specialist in 2015, he was CONVINCED I had narcolepsy).

I missed an average of 30 days of high school per year, mostly due to days where it was literally impossible for me to wake up no matter what I did. I got worn out easily. Gym class was the worse. I had a lead role in a school play and was very often to tired to make it to rehearsal even though I wanted to badly. (I have social anxiety, which I talk about later, but a musical is one thing I'm willing to lock it away for).

I felt guilt all of the time, maybe my best wasn't good enough? Maybe everyone else felt this way and I needed to push myself? Slowly I started to guess that something was off, at some point I could tell this was a condition specific to me. Sadly I just assumed it was something I could try to control on my own by making healthy choices.

● How did you manage the symptoms before professionals became involved? At what point did you get professionals involved?

I started to let myself rest. In college I'd sit down in class when we were suppose to be standing for a demo. I tried not to guilt myself for all the (expensive) Ringling Classes I missed. Sophomore year I focused on going at my own pace, eating as best as I could, drinking TONS of fluid, working in my dorm room. I adjusted my sleep schedule to a strict 7-8pm bed time so I wouldn't over sleep, putting my phone on the opposite side of the room, an alarm clock app with math puzzles I had to solve to wake up to.

The problem was as I did this I continued to grow more fatigued. By the end of my Sophmore year at Ringling I only managed to get to each class once a week, if at all. Sometimes I woke up barely being able to move, I'd often spend 2-3days in my dorm room in bed before resurfacing. Even my roomates were way to busy to notice.

Once I left, my family spent the summer moving to Illinois. I was determined to fix this. For some reason, I thought all the fatigue was from Depression and that the symptoms of my (unknown) Hyperadreangic Postural Orthostatic Tachycardia was an anxiety disorder.

So I immediately got into one of the best psychiatrist in Peoria. By Novemeber 2013 I became totally bedridden, which opened the door to a lot of depression, and my uneducated self assumed depression was the problem rather than a result of other things. After about 5 months, they told me they we're not going to prescribed anymore meds because they were convinced this was something physical. They sent me on my way to an Endocrinologist and that's when the ball got rolling.

● What did you think your symptoms meant? What were your first thoughts?

Somehow, in the back of my head, my instincts anticipated for a long time where this was headed. I had asthma as a kid, and I apparently had pneumonia 33 times. Countless episodes of strep in highschool, along with stomach issues. So I figured my body was very sensitive to getting sick and becoming upset over anything it was able to respond negatively too. And as I said before, I have struggled with depression for a long time, early high school, so I assumed fatigue was an extension of that.

(An important fact, one of the first symptoms of autoimmune issues and other chronic illnesses like Multiple Sclerosis or Lupus, is Depression).

Once Psychiatric causes were off the table the causes of the chronic fatigue was a wild card. EVERY PATIENT with chronic fatigue knows it's basically the wildest card there is. It can be caused by a slew of things. I read about Chronic Fatigue Syndrome and it made a lot of sense. That's when I started to take things seriously and began researching and going down paths beyond it. Becoming educated is also how I was finally able to give myself a break.

● How was it talking to your family about your initial symptoms and the illness itself? How does it feel when you talk to people about it outside of your family?

Family is the number one reason I went so long without a diagnosis. As I look back I can see how absurd my life was due to my health complications, it's incredibly obvious. My dad would hound me on how “It's a choice, Rachel! Everyone struggles, you have to just push through it.” (That's the polite version of his words). My whole life was centered around going above and beyond just to do normal things, and often do them in an exceptional way to compensate for being rather unreliable.

Once the door was opened to the fact this was physical, I panicked to find every answer I could, not so much as to fix it, but so I wouldn't be constantly beat down by the incredible guilt that came with thinking this was my fault and that I wasn't trying hard enough.

Once I came up with solid answers, I'd tell my parents, I'd explain things to them, show them articles, so I wouldn't have to risk being eaten alive by criticism. This was a major turning point for me in my life because having answers, knowing it wasn't my fault, gave me my power back.

Telling others is a mixed thing, usually I am very happy to inform them, illness symptoms and what causes them is a very relateable conversation for almost everyone. I have made good friends who met me after I became bedridden, who know to embrace it. One friend who was turned away by doctors who I told to go back because he had narcolepsy, and that week he was diagnosed with narcolepsy. Friends who had had trouble with their medications, friends who were struggling but didn't know how to approach doctors with their issues. There have been far more positive interacts from people I tell than negative. There's always going to be those who try to compare their situation and don't grasp the levity of what you're explaining, but you know you've found a new friend when you see them take a step back and suddenly re-evaluate how they are seeing you. You're suddenly in a much more personal and encouraging conversation, and those conversations go a long way.

● How did your family react? Did your immediate family react differently than your extended family? ● Who did you perceive to be helpful or not and why?

My mom has many of the same issues I do but less severe. Before me, she didn't know what to call them, and she didn't pay them a lot of attention, she didn't have to. My dad was slow to accept. It was several months of walking him through everything and always fully explaining myself to get him use to everything. My extended family was a little tricky, my mom's side understood very well. (My mother has...nine? Sisters? She's one of eleven children). I remember one time when visiting my Dad's Parents, and his brother, wife, and daughter were there. After a few hours I went to a bedroom to lay down and take a break and my uncle picked a fight with my dad claiming he was letting me get away with being lazy and destroying my life, to which my dad told him he didn't understand and began to explain P.O.Ts. This was the one time I've seen my dad stand up for me. My uncle was shocked because he was not expecting cardiac involvement, he himself has struggled with severe heart problems the past couple years. He realized this conversation was over his head and kind of just shut up after that.

I perceived my family as more on the unhelpful side. With the exception of my mom. Truthfully, everyone has let me down 97% of the time. Everything that has been diagnosed or treated has been from my persistence. No one tries to involve themselves, I spend months alone in the basement. My family member s don't come down to “talk”. For the past few years I have not been bitter or too upset over it, but during the past 8 months, specifically the past 3, I've gotten visibly worse. I developed brain damage and began to struggle with speech, planning, flexible thinking, unable to multitask, sydenham Chorea, a form of shaking, in my hands, and tics. Because of the brain damage, it took me a while to realize what was going on, because I couldn't processes exploring the symptoms. I was blocking out doing so out because it took extra energy so I wanted to focus on other things. Hadn't I done enough analyzing of symptoms in the past? I couldn't analyze like I could a year ago, and I didn't understand that yet. I didn't realize it was the biggest road block.

Eventually, as it got totally debilitating, I was the one to figure it out and I wish to God that I wasn't. I wish that someone else would have gone “okay, something's different. Something's really wrong with Rachel.” but that's not what happened. I couldn't really be there for myself and no one that was supposed to be showed. It is a fresh wound and I am still royally pissed. I wish someone else was here for me in they way I've had to be here for myself.

The most helpful people have been my friends. My friends genuinely care even though lately I haven't seen much of them. They have an empathy that I just don't think runs in my family, unlike the health issues.

● How does your illness affect relationships with others including family, friends, and strangers?

Illness leaves me incredibly isolated. There's not a lot of people to interact with in my bedroom. I barely get to see friends anymore due to their busy schedules and my living situation. As my illness has gotten worse over the past year I've started hiding away more. Conversations and interactions can be very over stimulating, even ones online. Prior to get sick I was rather introverted with social anxiety, a social anxiety I have even in my own home that only goes away for a tiny handful of people. (When it does it's like night and day, full of passionate monologues and musical numbers, I kid you not). When someone messages me online nowadays, I get an adrenaline rush I can't curb. My body turns that into an anxiety that completely freezes me up and wears me out for the next several days. If a family member comes down during a time when I'm not feeling well that sudden adrenaline starts, I may become a little catatonic, and my speech problems will start to show. The stutter/dysaphsia due to neurological/brain damage tends to become more apparent when I'm stressed, flaring up, or have been talking to long. It can make communicating difficult and awkward.

Strangely enough, it's easier to handle it when it happens with strangers. They tend to be more inclined to listen when this happens, and not take it as personally as my family and my recent boyfriend have. But all these things have left me hesitant to communicate with people as it is one of the most exhausting things I've faced so far.

● What messages did/do you receive from the larger society about your illness?

It depends on what part of society were talking about. In the real world, the message can suck. Mostly because it's either “suck it up” or worse, it's non-exsistent. A passive, non communicative society is dangerous. It leaves the door open for things to becomes worse, for millions of others in my position to go disregarded. We are in need of your attention, of your advocacy, and a chance to represent ourselves. Whatever you do, don't become Chronically Ill or Disabled in a Capitalistic society. Unless of course, you plan on not being so chronically ill or disabled that you can monopolize on your life by writing books or creating a website filled with health tips and allergy safe recipes. Even then, that can be a soul-draining endeavor, so I don't recommend it.

Online, it is a world of empathy where others who experience similar issues continuously try to support each other. Where spreading information is a major positive. You are allowed to be sick online. I don't think I would have made it this far without the internet. So many others say the same thing. The internet has allowed so many people with Chronic Illness and disability to find ways to cope, regain a sense of community, and continue living a life. A life that is still worth living, that keeps them hanging on.

● How does your illness affect your daily life?

Illness likes to plan my days for me. It's the perfect custom prison. How long I spend on a activity is usually up to my illness, and what activity is pretty much up to my illness. For instance, pretty much everyday when I wake up, I will need to use the bathroom. But my body will be so difficult to move it will be 1-3 hours before that happens.

I can't drive anymore, I can't take walks (believe me, when Pokemon Go came out I tried), and I exclusively leave the house for medical related things.

Let's say I want to shower today, and I'm kinda feeling up to it (Yay!). But my muscles are stuck, my brain keeps freezing and I'm having trouble processing the steps to gather clothes for after the shower and walking myself to the bathroom. It can be several hours before I finally get there. Maybe I'd like to draw. After 15 minutes I'm becoming catatonic, the lights are to bright, and my brain becomes inflexible, I suddenly can't processes how to continue on the drawing and my entire being is frozen. I still want to draw, but my everything can't figure it out.

I've made a rule when planning a day, that I only have 3 task to do. For example, shower, important phone call, and ordering something I need online. This has worked really well for me.

● What is your perceived quality of life?

This past year has been rough. I don't have an actual bedroom, and having no walls or doors messes with a person's head. I developed brain damage and no one took notice. I got worse and we still don't have very solid medical explanations. I shower once every four days. And I can't clean up my guinea pig's environment as much as I like.

Everything is exposed, interactions are shallow, my body's terms are unknown, everything's a mess, and life is rather out of control despite my quiet but continuous drive to take care of all I can. It's hard to get my head outside of feeling these things.

I can't continue living like this. I'm currently doing everything I can to fix what I can and get out into a new environment.

● What are your hopes for the future?

Currently my friend Victoria and I are looking for a place to move into together. Which is a enormous step, but it's a start. It's my hope that this will be an environment where I can feel more relaxed and have friends over to visit, and that I'll be able to rebuild skills around my independence.

My hopes are very controlled by my expectations. I want to be able to find some sort of groove, find a way to manage illness and be able to do something.

I hope that medical research will advance, that information will become as popular to share in everyday life as it can be online. That people like me will be advocated for, represented, and not forgotten and hidden away.

I hope there will be more in my life than what there is now. A significant other, my own home filled with plants and large windows.

I hope that my life will be something that makes waking up and feeling like I was Daredevil-style fighting crime in my sleep, everyday, a little less crappy.

● What role does your illness play in your expectations?

It's funny you asked that, one of my most popular Tumblr post was

“People: You shouldn't give up on your dreams just because of Chronic Illness!!!*~*~*~*

Me: The only dream I have now is to recover or reach a point of slightly functional stability”

(1,153 notes, hahaha).

It's true, I had to let go of all my dreams. When you can only shower every 4 days you don't have a choice. At that point you can't even dream that big. All your day dreams become more realistic and there's no way to stop it. But ultimately, being able to establish some form of independence is a big goal of mine.

A good “expectation killer” example: I started singing again back in August on a Karaoke app called Smule Sing!. It took all my energy to just do a couple songs a day, but I was invited to an elite group on the app and got a couple hundred followers pretty fast. Singing on there was the most consistent activity I've been able to do since getting sick. Most days I had to take Lorazepam to avoid catatonia and muscle stiffness, some days I couldn't find the energy. I did well until I took the antibiotic Flagyl and developed the neurological/brain damage. It was unexpected and sudden. I've gotten some skill back, but it's so much harder now, and truthfully I don't know if this issue will ever reverse itself or improve fully.

As much as I would like to, I can't spending everyday writing or drawing, or creating some kind of job that would generate an income for myself, or even just create fulfillment for myself.

I have no idea what my future's going to be like and I'm not really planning for it, not at this moment anyway. There's too much up in the air medically to tell how I might be....heck, 2 years from now. Remember, I'm still adjusting to this past year of becoming worse. So many things are beyond my own control, and I just want to hone into the things that are so I can have somewhat of a secure footing through it all.

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