#and my literal best friend who has chronic fatigue that would make it hard for her to shlep out somewhere else to meet me *lives there*

[obstinatecondolement]

Having a random panic attack about my stupid Work Trauma from this year. It never fucking ends.

#I am honestly this fucking close to just writing the headoffice a letter saying what happened there and how it's affected me #not in an 'I'm suing you' way or a 'I want my job back' way or even a 'these people should be in trouble' way #but a 'this happened to my while working at your company and it it shouldn't have #so please safeguard against it happening to other employees of yours in future' #since I don't want a fucking reference from this place anyway #I get panicky thinking about going to *the town where that shop is* never mind the shop itself #and my literal best friend who has chronic fatigue that would make it hard for her to shlep out somewhere else to meet me *lives there* #I've been back once but not to the main street where the shop is and I was very shakey when I arrived and left the building I went to #I probably won't though because I don't want them to talk to me ever again and it probably would get followed up on

[thegreenwolf]

(This post was originally posted on my blog at https://thegreenwolf.com/its-okay-to-not-hustle/)

There’s this meme going around Facebook right now, saying “If you don’t come out of this quarantine with a new skill, your side hustle started, or more knowledge, you never lacked time. You lacked discipline.” Thankfully multiple people have already skewered it, but it continues to be shared around by the sort of person who is trying to one-up everyone else, or who’s just plain clueless–or, for that matter, just trying to guilt you into buying whatever they’re selling.

Now, there’s not a damned thing wrong with self-promotion. That’s how indie artists, authors, and other self-employed folks get the word out. You have to be able to talk good talk in order to get people’s attention. But leading with this meme? Guilting people for not leaping from sudden unemployment straight into the thick of the ever-shifting gig economy? That ain’t gonna fly, Brocephus.

You Have Good Reasons to Slack

Excuse me while I dust off my counseling psych degree a sec, here. *ahem* We are in a very sensitive, turbulent time right now. We’re in the middle of a pandemic, the likes of which hasn’t been seen in a century in the Western world. We are in a hugely traumatizing situation here. Not just for the financial losses, but the fact that COVID-19 has killed thousands of people and left many more with permanent lung damage. We still haven’t gotten a handle yet on exactly how contagious this thing is, how long you’re contagious for, or whether you’re immune once you’ve had it, assuming you survive. We don’t have adequate testing, emergency rooms estimate that for every positive test there are 10-20 people out there infected and untested, and everyone with a cough is suddenly Schroedinger’s COVID case. Governments worldwide are slow to react in spite of the rising death toll. People have had friends and family die horribly from this thing in a short period of time. Even people who didn’t already have issues with anxiety, depression and other mental illnesses are feeling stressed, strained and scared–and, yes, traumatized. This image is guilt-tripping people who are actively being traumatized.

So we’re already starting with a populace that is dealing with this collective trauma, as well as whatever personal trauma each individual is experiencing. Not always easy to seize the day when you’re going through that. And I can think of a few other reasons that might further complicate this whole “Just get a side gig!” thing:

–They’re a parent who suddenly has all their kids at home, all the time, demanding time and attention and food, AND they still have to work eight hours a day from home, or maybe even more if their S.O. is unemployed/sick/etc. By the way, if someone trots out Isaac Newton or William Shakespeare or some other historical guy who managed to do epic things during a pandemic, remember that they usually had wives or servants to do all the laundry and cooking and cleaning and (if applicable) childcare for them.

–They’re disabled or chronically ill, and don’t have the ability/energy/etc. to just go and make something happen, just like that. Imagine if you just randomly got the fatigue from a really bad flu, and you never knew whether it was going to last a day or a month. And if you tried exerting yourself when you were feeling better, chances are you’d slip back into fatigue-land. That’s what a lot of my chronically ill/etc. friends have to deal with, to say nothing of issues with accessibility of resources for starting a side gig.

–They don’t have any money for the supplies needed to start a side hustle, or the supplies have been hoarded by hobbyists preparing for a Pandemic Staycation.

–They don’t have the skills for something that just requires what they already have (like, for example, writing on a laptop you already happen to own). Often these skills are things that can’t be perfected in a few weeks at home, but may take years to develop before they’re really marketable–like, for example, the skill to make a decent living on side hustles.

–They have anxiety, depression or other mental health conditions that make it hard to function even in the best of times, but even moreso in this…well…mess. Even people who were mentally healthy before are going to be developing diagnosable anxiety and depression disorders before all’s said and done. And speaking from personal experience, those of us who look successful on the outside can still be internally hamstrung by these conditions at times.

–Plus there’s the fact that we’re not supposed to, you know, leave our homes, which narrows down the field of potential side gigs by a lot.

Even doing something less financially-wrought like learning a new skill or subject takes time, energy, and sometimes money, any or all of which may be scarce for the reasons above and more.

Comparison is the Thief of Joy

I am saying all of this as someone who is arguably an expert on the side gig. I have spent the past eight and a half years 100% self-employed (and a lot longer doing it part-time) as an author and artist, able to cover all my bills and expenses, and for a time I was the primary breadwinner of a multi-person household. I have like ten different things I was doing for a living before this all hit, a pretty diverse set of streams of income, even if most of them just up and evaporated in the past few weeks. And while I’m definitely a hell of a lot leaner now than I was a month ago, I still have my head above water for the moment. So I think I know side gigs.

I’m one of the lucky ones. I’m overall healthy. I have a dog who is a lot less demanding of my time than kids would be. I have my own space where I can focus more or less without interruption. More importantly, I have the skills, the knowhow, the drive and the personality to go out and seek new opportunities. And I’m used to fluctuations in income, though admittedly this one’s unprecedented. Don’t gauge yourself by where I am now. I’ve spent twenty-two years building up my art business, my first book came out in 2006, and I’ve had a series of really good opportunities come my way that I had the privilege to be able to make the most of. I am not your measuring stick, so don’t say “Well, if she can do it why can’t I? I must suck!”

If you’re feeling crappy because you aren’t hopping to it and carpeing the diem and getting everything done, here’s what I have to say to you: Look, you just had your world turned upside-down. Job loss, scarce commodities, sudden lack of outside childcare, restricted movement and inability to be around much of your support system, and did I mention a pandemic is happening, too? Any single one of those things would be difficult for just about anyone to deal with, never mind all at once. And I don’t even know what all else has already been going on in your life–unstable or unsafe living situation, other health issues, breakups and other losses, interpersonal conflicts. You know, normal life stuff.

You’re Not Lazy, or Screwing Up, or (Gods Forbid) Undisciplined

It is totally okay if all you’re doing right now is surviving. It’s okay if you feel like you’re drowning, overwhelmed by all that’s happening both on a global level and more personally. It’s okay if all you can manage right now is to get out of bed and stumble through each day a moment at a time, struggling with a tidal wave of emotions. It’s okay if you’re just trying to keep your kids busy, dealing with a crowded home every single day, or trying to keep COVID-19 at bay. It’s okay if, instead of firing up DuoLingo or opening an Etsy shop, you spend your evenings vegging to Netflix or reading a book or playing hours and hours of Animal Crossing.

Not every moment in your life has to be about being productive even in the best of circumstances, and that goes exponentially so right now. Be patient with yourself, and be kind. You may be one of those folks who literally has to spend all their time scrabbling to try to cover the bills or get some leeway from bill collectors, and you have to dedicate your waking time hunting for resources just to try to get through this week. Believe me, I feel for you, I have a lot of friends in that situation right now, and I hope all of you can find some relief and assistance.

May I suggest something? If you have the energy for something more than the bare essentials of getting by, put that energy toward self-care, whatever you can manage under the circumstances. You can use it to recuperate, to rebuild your emotional and physical resilience. That way if things get rough again in the future, you have more internal reserves to build on. If your usual methods don’t work or aren’t accessible due to lockdown, ask others what they’re doing to keep themselves grounded in this trying time.

Just because you have more time doesn’t mean you don’t have to throw yourself right into something productive! Don’t feel pressured to just go-go-go the moment you have a little freedom to move. If you do decide you want to try a side gig, or a new skill, or learn all about some specialized topic of interest, go for it! If you have the energy and attention and opportunity to pursue something new, it can be a great coping skill during this traumatic time. Just don’t pressure yourself; keep it fun.

One last thing: I want you to save the image I have at the top of this post. And then if you see someone post that meme, saying “Come on, you lazy bums, get up and make that side gig happen! Learn new stuff! Do all the things! No excuses!” you pull out this version, and you look at the edits, you remember that it’s okay to be where you are, and you get back to doing things at your own pace no matter what someone else says. (I find visualizing stapling a printout of the edited version to the offender’s forehead to also be therapeutic, but that may just be me.)

Hang in there, okay? It’s going to be a rough time, but you’re not alone, and what you’re feeling right now is shared by so many people. So just let yourself be where you are in this moment, and we’ll see what hope tomorrow brings. And remember that whatever you’re capable of in this moment: it’s enough.

Did you enjoy this post? Please consider supporting my work on Patreon, buying my books here on my website, buying my art and books on Etsy, or tipping me at Ko-fi!

#COVID-19 #mental health #executive dysfunction #anxiety #depression #mine

[of-faunsandyellowflowers]

Hello! I saw that you posted about working with Cernunnos, and I'm interested in working with him honestly, but there's one problem. I'm Chronically Ill, and have been bed bound almost all day, so I'm worried about how good of a devotee I can be when fatigued or depressed. Do you think Cernunnos would be alright with a Chronically Ill follower, and how he might even be able to help? And do you have any ideas for how to worship him while having little energy? Thanks so much, I appreciate it!

Hi! I get this question a lot from people actually. I'll post this one publically so ppl can see. This is going to be long! I apologize for that.

First and foremost: disabilities/chronic illness are NOT an issue for most deities/spirits that help guide is. There are some who are very old and quite unwilling to interact with humans due to past grievances or trauma that these souls have endured, but it's not a disability thing.

This is something that many many many of us here on earth experience (myself included, I am autistic with adhd, major depressive disorder, PTSD and major anxiety alongside IBS, Fibromyalgia and Chronic Fatigue Syndrome). I get this question a lot, and I've had this question myself.

Cernunnos (link to my long post about it which also mentions this) actually has a soft spot for chronically ill people and adores helping comfort them and bringing them guidance. You do not need to worry about this being a burden within your work. Theres SO many ways to practice magick, ritual, meditation and be a devotee to a god even when this way. I'm a dark forest/green witch (non wiccan) and I'm also a kitchen witch. These forms of magick bring me the most comfort and work best for me. Find the types you are drawn to, and incorporate them into your day. It doesnt need to be big. Divination, for example, is a good way to communicate with your gods when you are unable to meditate. Little things are just as impactful as the large ones and require minimal effort. Make tea with certain ingredients and enchant a spell for it....etc.

The first piece of advice I can give you is to get yourself into the mindset that you are, and shall always be good enough for a god to help guide you. This will not only raise your vibrations but will also set you on the path that you need to be. I fall back on this sometimes. This doesnt mean become conceited. We still need to show respect to these divine beings and when they offer guidance, be nice. DO NOT demand things.

Second, meditation is INCREDIBLE. it does NOT need to be some in depth 'find your soul' type meditation. With adhd, I have an awful time trying to concentrate. One thing Cernunnos has told me is that I must take my own time, and be patient. Even 5 min a day helps. Meditation opens you up to spirit more, grounds you, and makes it easier to do spirit work the more you do it and the longer tou do it. It is also VERY good way to cope with disabilities as it calms our mind down as well as body.

Third, grounding is 100% needed. This is why I mention meditation, through this you can learn to ground. Grounding is an exercise which literally 'grounds' your soul into your body, calming you and giving you a better base for when you start doing more magick. It's very easy to learn and takes minimal effort.

4th, learn divination. This can be tarot, oracle, pendulum...whatever YOU feel is best. This is the way I normally talk to Cernunnos when my hearing is blocked.

5th, learn how to put up wards. This is mentioned in my Cernunnos post that I put up. A lot of people on here will state you do not need them. Heres the thing, you do. It's not because Gods cant protect us, it's because Gods have SO many people that they work with and theres so much that we as humans? We dont know about. As someone whose been attacked BY a malicious spirit, I can concur you do need wards when you do magick. They also are essential because they teach you defensive magick which Gods would want you to know anyway when you get to the point of travelling in the astral, but that's more advance magick. Anyway how to wards is in that link!

6th, in my link I shared it talks about a lot of ways to get in contact with Cernunnos but I'd like to mention some ways I do it as a chronically Ill person myself. I'll also list ways I personally offer him things.

Meditation outside (not during winter)

Dancing (he adores dancing)

Listening to irish/celtic music

Cooking with his favorite foods

Tarot

Telling him about my day out loud

Telling him I love him, thanking him for his guidance

Wearing his pendant.

Singing in irish

I'd also like to note that Cernunnos has such a soft spot for his disabled devotees, he will literally yell at you sometimes if you are pushing yourself too hard or being disrespectful to your body in anyway. And some warnings: if you choose to work with him you HAVE to be respectful to nature. This doesnt mean be vegan. Cernunnos adores meat, you just need to honor it. Always give an offering or ask a plant prior to picking. Make friends with your local fae (just offer them things to keep the peace), talk with your trees. Be kind to the earth. That is his #1 rule when working with him. I've seen him get furious over trees be cut down too soon. He hates how corrupt our world has become.

He loves us, but he wants us to respect ourselves, our home, and so forth.

Again I hope this helps and you guys are always welcome to reach out to me about him!

#cernunnos #celtic pagan #paganism #celtic paganism #disabled witch #spirit work #witchcraft #pagan #celtic pagans #kernunnos #pan #forest god #horned god

[thelonelyrainbowguy]

Meet Persephone.

Persephone is the first mobility aid I’ve ever owned. I’d been thinking about getting a folding cane for bad chronic pain days for literal years, but every time I had one in my Amazon cart, ready to order, I’d think “I don’t actually NEED this. It’s only unbearably bad once in a while, and even then it usually doesn’t last long.” And I wouldn’t order it.

But over the past few years, my general pain and fatigue has gotten worse. My joints are more unstable, which causes my muscles to work extra hard to keep them in place when standing or walking. And just going grocery shopping makes my low back hurt so badly I need to lie down (my legs are different lengths, and on top of that, my low back muscles work super hard to keep my hips in place).

So I posted on Facebook about how I was thinking of getting a cane, but having trouble with my internalized ableism and severe social anxiety, and a few wonderful friends encouraged me to do the thing, and I ordered Persephone.

I received the package today, still thinking that it wasn’t a worthy investment. I opened her up, unfolded her, adjusted her height, and began to walk around with her.

I noticed the difference immediately.

The muscle fatigue in my lower body was greatly relieved. My knee joints didn’t grate quite as hard. My back wasn’t as tense and achy. And when I put it down and walked without it, all that pain and exhaustion came back right away.

For years, I suffered through it, thinking it wasn’t that bad because I had no frame of reference to tell me otherwise. But I finally took the plunge, thinking I’d only use it when I really, truly needed it, and now I’m realizing that I do need it, all the time. Anyone who has acquired a disability (rather than being born with it) can probably tell you what a strange realization that is to come to, and all the conflicting feelings surrounding it.

Having a cane is great. But it also sucks.

Because, like I said, I have severe social anxiety. I walked to the mailbox with it earlier, and smiled at a neighbor, and it made me feel nervous, but empowered. Then I took out the trash without using it (no garbage juice on MY cane, thank you very much) and the realization suddenly struck me that anyone who had seen me walking with it earlier might see me and think I was faking, or using it for attention.

And it shouldn’t matter what anyone thinks.

But, as anyone with social anxiety will tell you, the part of your brain that cares what people think of you is EXTREMELY difficult to turn off.

At work, I go down two flights of stairs and a long hallway to get to my desk. When I go outside on breaks, I have to go all the way back up that hallway and the two flights of stairs. And after five or ten minutes of standing outside to vape, I’m exhausted and I need to sit down and rest. I’m often extremely fatigued just from walking to the kitchen, washing the dishes I used, and returning to my desk. Frequently, sharp joint pains in my ankles or knees will strike when I’m going down the cement stairs, almost causing me to fall (I haven’t yet, but I’m always scared I will). Using my cane would be extremely beneficial to mitigate the exhaustion and provide a layer of security against the possibility of falling and cracking my head open.

But the thought of the looks I’d get, the questions people would ask that I’d have to answer over and over, and the questions and looks if I didn’t use it, not to mention the prolific gossip culture at my workplace, honestly terrifies me. Yeah, people would get used to it eventually, but the thought of that period when I’m constantly having to explain myself, constantly feeling eyes on me, is mortifying.

So I’m going to start slow. I’m going to use it to walk around my house, around the neighborhood, with friends, maybe when I’m running errands. But even if I do eventually get rid of all my internalized ableism, I don’t know if I’ll be able to get past the social anxiety enough to use this thing that helps me. And that’s really sad.

Mobility aids are not embarrassing or shameful. Anything that helps a disabled or chronically ill person live their best life is absolutely wonderful. Just be aware that they might feel this way, too, and don’t stare or speculate or ask questions. We’re people, just like you.

To my fellow babes with mobility aids: No matter your reason for using a cane, rollator, wheelchair, crutches, walker, whatever works for you—I see you, I validate you, and I love you. Live your best life.

#disabled #chronic #pain #mobility #aid #disability #cane #walking stick #nature #trees #outdoors #leaves #butterflies #persephone #illness #joints #joint pain #hypermobility #hypermobile #eds #ehlers danlos #ehlers danlos syndrome #internalized ableism #ableism #social #anxiety #anxious #questions #babe with a mobility aid #fatigue

[midearthwritings]

Could I please get an Lotr and The Hobbit Matchup, of you're still doing them? Thanks so much!

🌱 18 year old Woman // Bisexual // Autistic and Disabled with a bonus Anxiety Disorder

🌱 I have a litany of Chronic Illnesses including Autism, Generalized Anxiety Disorder, Depression, Dyscalculia (Dyslexia for Math), Scoliosis, Sleep Apnea, Asthma, a Growth Hormone Deficiency, Insomnia, and a very bad Overbite. I also have a condition where my right leg is physically longer than my left, which causes pain in my hip and right leg, as well as trouble walking. My usual symptoms include Fatigue, Back Pain, Executive Dysfunction (struggle to get tasks done), Difficulty breathing and talking, Very short stature, and difficulties with my balance. I also stim by pacing around in circles and talking to myself.

🌱 I have a serious fear of heights, partially because of my balance issues. It's so bad that I can't even use stairs without holding onto the railing.

🌱 I know a lot of Home Remedies and Superstitions for like no reason. For instance, did you know that Raspberry Tea helps with Menstrual Pain, or that knocking on wood invokes the protection of the tree spirit and that’s why it’s said to give you luck? I don’t know why I know that, but I do.

🌱 Winning a fight is on my bucket list, but it has to be for a good reason. I’m not one to just pick fights for the sake of fighting, and I’m actually pretty conflict-averse due to trauma, so I need to actually have a solid reason for throwing hands. But I’ve always wanted to do it for some reason.

🌱 I really like studying Witchcraft for some reason. The first spell I ever performed was a Healing Spell to help my friend who was sick with Crohn's Disease. Thirty minutes after performing the ritual, I got a text saying he felt a lot better and he was released from the hospital a couple days later, so I guess it must’ve worked. 😁

🌱 My love language is definitely gift giving. I’m pretty cheap, but I’m also an artist, so when push comes to shove I’ll just make something for someone when I like them. I pay very close attention to what people like because it gives me more ideas on how to interact with them. I’m essentially a large, flightless Crow. You were nice, so you get something shiny. But though I like giving gifts to others, I’m not very materialistic at all. I prefer to be practical when it comes to things, and I get very nervous when spending money on myself.

🌱 I’m an avid writer and am actually planning on publishing a book this summer!

🌱 I LOVE going outside and getting messy. Playing in the mud, getting soaked in the rain, I’m the type to go outside and come back home covered in dirt and twigs. It’s just really fun to me.

🌱 I've been told that I'm a very good cook, and I can bake pretty well too.

🌱 I’ve always wanted to be a really good gardener. My dream house is just covered in flowers and plants and such. I want to live in a Greenhouse, basically.

🌱 I have a habit of giggling to myself just by remembering something funny that happened, even if it was a couple years ago. I also laugh when I do something stupid, because I find my flaws and shortcomings funny for the most part. I love to laugh with people, but never at them.

🌱 I know way too much about Spirits and Fae. My favorite book is called ‘The Encyclopedia of Spirits’ and it shows you how to contact and interact with a ton of different deities and spirits, and I’m addicted to reading it. It’s the best.

🌱 I’m basically like a tiny, less-impressive Aragorn. I love travelling on foot, getting messy outside, I was kind of a Horse Girl as a kid ngl, I’ve always wanted to be a knight or king of some sort, chances are that I haven’t bathed in awhile, and I too would pine for a hot elf girl for literal years on end.

🌱 My closest friends say I give off “Dwobbit” vibes. That’s a ½ Dwarf and ½ Hobbit btw. I’m around 4’ 10” tall, I don’t shave, I love crafting and art, I live in the Mountains, I’m tomboyish but I also love gardening and can be a bit of a homebody, I love going barefoot, etc.

🌱 I really love History, Folklore, Mythology and Fairy Tales. My favorite is the Irish myth of Oisín in Tir Na Nog. Look it up if you don’t know it, it’s a fantastic story. But I also appreciate myths from all sorts of different cultures, like the myth of Annapurna in India or the tale of Princess Kaguya in Japan.

🌱 I’m an Aquarius, INFP and 4w5 if that means anything. For reference, characters who are also 4w5 INFPs include Lydia Deetz (Beetlejuice), Wirt (Otgw), Frankenstein’s Monster, Luna Lovegood (HP), Napstablook (Undertale), Erik The Phantom of the Opera, and Celeste from Animal Crossing. That kinda tells you a lot about me, doesn’t it?

🌱 I am naturally very shy and take awhile to open up to people. I also get flustered very easily and tend to avoid social interaction a lot. I’m a huge introvert, but I also really do love meeting interesting people, so I try to talk to them when I have the energy to.

🌱 I have very long Disheveled brown hair, that actually used to be blonde when I was little, so there’s a few lighter patches in there. It's essentially a fluffy mane at this point, but because of my poor hand-eye coordination I never learned how to braid it. I have really pale skin, with lots of moles, freckles and scabs. It’s also warmer out, so I almost certainly have a farmer’s tan. I have very light blue eyes and glasses.

🌱 I have a habit of seeing shadows move out of the corners of my eyes, frequently mistaking them for people or animals, but when I turn to look there’s nothing there. I’ve gotten my eyesight checked multiple times, but there’s nothing out of the ordinary, so it’s either a lack of sleep, or the Fae are getting antsy with me. Probably the former of course, but part of me would like to believe the latter too.

Sorry the description is so long, I can't wait to see my results! Thanks so much, wishing you the best!!

Hey darling! First, wow that was really long! Sorry for taking so long to make it, as I mentioned before, I'm a fucking procrastinator.

Aragorn

For LOTR, I'm pairing you up with Aragorn.

Aragorn had probably loved you for a really really long time.

But he's extremely patient and careful with you, so it took him a while to confess his love.

When he did, it was kind of overwhelming for you, and you were really doubting the whole thing. But again, he was really patient with you.

Aragorn doesn't cover you in gifts to show his love. He shows it by remembering all those little things that make you you.

The two of you can spend hours telling stories and tales to the other. It's your favorite thing to do together.

He loves that you write and always ask to read your work. Although, he never pushes you and respects you when you refuse.

He knows about every single one of your illnesses and makes sure that you always have what you need.

Bilbo Baggins

For the Hobbit, I picked Bilbo.

Bilbo loves you deeply and truly. He thinks all the things that are annoying to others are what make you the most unique being he has ever met.

He thinks listening to you tell tales is more fascinating than reading.

Most of all, he loves when you read to him the stories that you have created.

Sometimes, your illnesses are a bit complicated for him to understand, but he does his best and listens to your needs.

His favorite thing to do with you is cooking. Sometimes, you will even compete over who is the best cook. Although he admitted more than once that you were.

When you are out gardening, he sits outside with you and watches you. He thinks it's beautiful how hard you work to make his garden look so gorgeous.

He is often insecure about losing you. He is scared that he won't be able to provide you with what you need, or won't be able to show you how much he loves you.

As for you, you fear that one day he might grow tired of you.

But the communication in your relationship is great and your insecurities are even washed away by promises of eternal love.

Again, sorry for the wait! I hope you liked it!

#max matchmaker #aragorn #bilbo baggins

[the-satellite]

Hello friends and welcome to ☆Hateful Nostalgia☆. I was exposed to the mob talker mod WAY too young bc I was an unsupervised child on the internet watching mod showcases and SkyDoesMinecraft. Looking back these sucked, the stories were often bland and the designs were milk toast at best and tits out at worst. So for the sake of procrastinating on working on anything substantial I grabbed the main 6 I remembered and gussied em up. Redesigns, rewrites, better names, all that bullshit. If your interested in better photos, design notes, story details and rambling hit the basement, otherwise here's a line up you should click for better quality.

Also I wrote all this once before already but I deleted it like a dumb bitch. On the night Unus Annus was murdered in front of my eyes no less. Was a rough fuckin night.

The Creeper- Kupa. An explosive pyromaniac with a habit of making empty threats and yelling. She protects what she believes to be her territory with a suicidal passion, but if you manage to get her to cool down and soften up she's pretty sick to hand out with. Hard of hearing, has at least one bout of head trauma at all times, and deathly allergic to cats.

Because the creeper is kinda the og I wanted to reference AT2's design more than the others, but I'm p sure the only thing I actually kept was the red hair and brown gloves. Otherwise I was doing whatever. I really wanted to lean into the explody bit of creepers, so I gave her some bite and dressed her in clothes referenced from Irish railroad workers. This may also be why I keep imaging her with a very heavy Irish or Scottish accent, whichever would be most incomprehensible when angry. Every color but her skin was color picked from one of the references, with some minor alterations for makes my eyes happy reasons.

With Kupa I imagine a story line with her would largely be about her as a character and her development than like an actual adventure narrative like everyone else. She starts off ready to blow up both you and herself in a misguided attempt to defend what she sees as her's and opens up and learns not everyone is out to get her. Lots of time taken to understand her childhood and how she ended up how she is. Very simple, probably the default or tutorial run people would go through.

The Zombie- Bee. The ill husk of a missing explorer suffering from a less than conventional appetite. She wallows in her self imposed loneliness, believing herself to be an irredeemable monster doomed to hurt those around her. What she really needs is a buddy and some clue to who she used to be. Rough voiced, chronically fatigued, and prone to spontaneous combustion in sunlight.

 I definitely consider this one the weakest for design sadly. I imagined Zombies as humans who went into strange caves and caverns and didn't come out for years, only to pop up as completely different people. I just tossed AT2's design. The first thing I did was make her a bit of a genderbent Steve and tinted her green bc Zombies in game are just Steve but green. Tore up her clothes, colored picked the darkest colors I could from the clothes on the in game and boom, Bee. I do vaguely regret not making her eyes pure black but I also still wanted her to be human enough to fit with the other overworld mods.

 Ok so Bee actually has a basic story. When you meet her she's aggressive, but as a warning. She fears the possibility she may hurt somebody so heads for threats immediately. Going back and forth between her cave and village for a while you learn more about the situation with the missing folks who come back and Bee as a person. After a bit you pick her up off her depressed ass and start a nocturnal adventure of refinding your past, adapting to who your becoming, overcoming self destuction, and slow burn babey!!! 

The Skeleton- Ulna. One of the few surviving warriors of a now destroyed kingdom and dead culture. She spends most of her time now traveling alone, hiding in trees and shooting anything see sees as a threat- which is everything- in the face with homemade arrows. Very much suffering from loss of her home and a bad case of lost purpose. A woman of few words, very antisocial, and naturally nocturnal.

 I came in with the Skeleton wanting to make her seem mysterious, so my first thought was immediately a cloak and a mask, but I wanted her face to like be visible so I went with the face paint. I didn't actually know that I wanted to do under there so I went with wraps that are reminiscent of the original outfit but still not tits out bc it's so fucking easy! Gave her a quiver, color picked the cloak and face paint from the in game model and the wraps from AT2'S art. I did like. Subconsciously draw her eyes the way I do Asian characters but I didn't have anything specific in mind so like go nuts with what you think she is.

 Ulna's deal is very much her lack of purpose or home and the entire thing is about finding that again. She's found sitting up in a tree during a storm pointing a bow and arrow into your face. She eventually let's you stick around until the storm is over and theres some bonding into deep night until the rain stops. You ask if she wants to come with on your little travelling sword for hire business, she says sure, sleep schedule shenanigans, backstory angst, and road trip bonding happens and she eventually decides that helping people is her new purpose and you're her new home

The Spider- Park. A young adult experiencing the world for the first time through her tribe's rite of passage. She's really just trying to figure out how to live life outside of the cave she's been stuck in her entire life and aggressively trying to be an independent adult despite not knowing anything about being an independent adult. Its projection. Blind in the daylight, naive and excitable, and taken to refusing help at her own risk.

 Ok so. I don't know who looked at the spider and said "purple haired loli with puffy pants" so I once again yeeted the whole thing, only really keeping the kinda cutesy and childish bits. Spiders are a tribe of humans what live in caves unless they've broken off to live on the surface. Kids are kept inside until they hit a certain milestone, where they come up to explore at night. They're usually small and pale, but are pretty kickass when necessary. Again picked the colors off the in game model, played with the lightest gray for the skin, and bc I couldn't figure out anyway to use the stripes so they're on the patches lol.

 Park's meeting is probably the funniest and most meet cute one here, in that she accidentally drops on top of you from a little cliff drop off. Cue loads of apologies and an explanation about the spider deal and being blind in light. She asks for some help getting around and bam babey friendship and emotional attachment! What follows is kinda a buddy of coming of age story with the obligatory goes home and is miserable scene. Generally it's just about being a scared young adult and having someone to fall back on and why that's important. Also crushes and young people being bad at that.

 The Blaze- Amber. A demonic entity who would let the world burn and the sun die if it meant she'd get her soul back. She's known for being ruthless, taking souls through force instead of making deals like other Blazes. Keeps this forceful nature even once she's become friendly, makes you do dump shit. Territorial, eyes glow and dim with her life, and runs remarkably warm.

 Amber here is the first one I actually did! I was just. Really tired that she was in a bikini. I decided early on I wanted overworld mobs to be human and everyone else was decidedly not, so Blazes are demons who gave up their souls under false pretenses to other Blazes. Because of how little clothes AT2's design wore I had essentially free reign and my thought was immediately to lean on golden knight bc of how Blazes are found protecting fortresses. The gold isn't picked from anything bc I was looser with the colors, but everything else is, and the hair is supposed to represent the smoke. Also the sticks in her hair are blaze rods bc I don't like them just floating around her.

Amber is found in the Nether obviously, protecting a fortress and immediately trying beat your ass and either incinerate you or make you give up your soul. During you prove yourself a p damn good fighter and she makes a deal to show you how Blazes exist and pursade you to give your soul up willingly. Bonding happens and she explains where the souls go and what happened to her. Insert line about how she dug in the sand for her soul until her fingers bleed bc I'm an Arcana freak lol. In general I'd just like her to learn to adapt to who she is now and learning to live life well instead of letting her anger burn her up from the inside out.

 The Enderman- Violet. A confused but sweet young bit of void created by and connected to the Ender Dragon. Her relationship with reality is tenuous at best and abusive at worst, making stable existence rather difficult. She doesn't know a name, age, gender, anything about herself aside from that she likes sweaters. Communicates primarily through psychic connections, docile and sweet, and melts like a witch in water.

 Violet was incredibly easy, so this may be way short. Endermen are decidedly human shaped void from the End with varying sentience. They're direct extensions of the Ender Dragon, and nobody knows how they're made or where they come from, not even they do. Adventurers who escaped The End say they seem scared of it though. Violet in particular is pretty damn new and extraordinary nonconforming, and I tried to show that with her sweater and ponytail. Once again, literally all colors picked. Definitely the simplest but one of my favs.

Violet is the sweetest meet up I think. As your traveling between villages you notice a strange enderman watching you and plant a little flower in front of her. She picks it and you hear a happy little trill come from you and a pretty voice say thank you in your head. Now you have a tall dark teleporting travel buddy! After a little bit of back and forth she tells you in some broken English that the Ender Dragon made her but she doesnt know how, and that it's bad and needs to be killed for the sake of Endermen and that's the new goal. Spoiler they're the corrupted souls of those that died fighting it, with it gone Endermen are free to exist as their own being and do whatever, hurray!

#cosmic entity's art #minecraft #mob talker mod #mc creeper #mc zombie #mc skeleton #mc spider #mc blaze #mc enderman #character design

[marculees]

Epilepsy Awareness Month💜

I recently seen this post by @interstellix  who made great points about epilepsy for Epilepsy Awareness Month. It sums it up really well so I suggest you give it a read and reblog! Its nice to find another photosensitive here too because we’re such a small group within the epilepsy community. I deal with anxiety on top of my epilepsy and while they aren’t always related to each other, I don’t hear enough about the day-to-day worries of epileptics. Things that seem completely normal or fine to some people can be dangerous for me, which is why stuff like giving trigger warnings are much appreciated. But often, non-epileptics don’t know about what its like to actually live with epilepsy - not just having seizures. I want to add on some of my own experiences with a funky clickbait title, below the cut. Anyone who reads this all is a star and ily⭐️

10 Things Non-Epileptics Don’t Get (Yet)

1. That moment in movies when the character wakes up and a bunch of faces are gawking down at the camera uncomfortably. Always have someone to stay with the person having a seizure. But out of care for both that person and the people around, its best to get everyone else away. No one enjoys watching someone have a seizure - it’s scary and knowing you can’t stop it can ignite feelings of guilt or panic. For the person having the seizure, its embarrassing - they aren’t even conscious of what’s happening and for all they can remember, they were minding their own business and now they’re waking up and barely able to move their body without wincing in pain.

*TW: BODY FLUIDS* I’ve literally puked, shit and pissed myself all at the same time unconsciously in front of a room of people. I’m lucky these people were my family but it doesn’t make it any less embarrassing or upsetting knowing that everyone there saw me in such a state. A fear I had growing up was having a seizure in front of my class and the students making comments about it, thinking it was funny. In today’s age, filming seizures is something to worry about too because of how easily it can be shared to others online. Even if you aren’t an arsehole like that, try to be as respectful as possible and get everyone else to evacuate the room. At most, have three people to stay there: one person to stay close and time the seizure, one person to move furniture away and find something soft to lay under the epileptic’s head, and one person for crowd control who is keeping everyone else out and reassuring them all it’s okay.

Whatever you do, don’t make the epileptic feel bad for having a seizure. They can’t control it. Afterwards, comfort them and let them know its all over and you’ll stay with them until they feel better (unless they say they would rather be alone). Most of the time, the epileptic will be so tired and sore after their seizure that they’ll fall asleep. Let them; they need it. I’ve woken up on a couch, in my bed, the back of an ambulance or in a hospital bed and sometimes I was laying there for half an hour, sometimes a whole day. Knowing someone was there is relieving. Knowing everyone was there is shaming and it doesn’t make you feel any better when they’re all in your face afterwards too. Don’t be the camera crew.

2. Travelling alone is either a dream or everyday reality for a lot of people, but its a no-go for some of us. I was raised in a very overprotective household and still today, I don’t have a lot of freedom. Driving is usually one of the first bits of independence you get, but not for me. I’ve had seizures while out travelling because of the SUN. The sunlight flickering through trees, railings or bouncing off surfaces have triggered seizures in me where my family have had to pull over. The thought of being the one driving in such a scenario is terrifying to me, my loved ones and everyone else on the road. Driving is such a normalised thing for people my age that I’m embarrassed to bring up my own case unless someone specifically asks.

Then you have public transport. The sunlight issue is also here but this time, you’re with a bunch of strangers (see Point 1 again). Something my mum drilled into my head since I was younger was that if I ever got public transport by myself, then I could have a seizure and someone would film it and another person would rob me (and then you wonder why I have an anxiety disorder). I got my first bus by myself when I was 19 and for something so mundane to most people, it was like a little adventure to me. My mum didn’t approve but she complained about having to drive me everywhere too. While its fun to get the bus into town every now and then though, it becomes a bigger issue when travelling is a daily requirement and you aren’t able/allowed to drive yourself.

Free public transport doesn’t always include those with epilepsy, depending on which country you live in. What do you do when an employer asks if you can drive? What do you do if you have committments to go to and no one is around to drive or come with you? Or you need to explain why you’re going out, every single time, because someone else has to decide whether its worth the risk. Sunny roadtrips? Want to be a pilot? That last one isn’t a joke, by the way! I used to get a coach/private bus to college and if it was sunny, I’d pull the curtain over, wear my sunglasses and try to nonchalantly cover one eye to help. You can’t really get a curtain while driving your own car though and driving one-handed is not cool, its irresponsible.

3. Staying up all night talking with someone you love isn’t as romantic as we’d like it to be. All-nighters, i.e. lack of sleep, are a huge trigger for many epileptics. I wasn’t allowed to go to sleepovers with friends as a kid until I was 13, and at that sleepover I ended up having a seizure in the middle of the night after waking up to use the bathroom. Not to flex, but I had a seizure on the toilet. Where’s the weirdest place anyone else has had a seizure?. As a result of that, I was put back on medication after being told I was growing out of my seizures and had been med-free for one whole year. I’d love to stay up with a loved one and spend the night talking or watching movies, but I think a seizure would be more of a killjoy than going to bed early.

3. Unless you’re the paparazzi, camera flashes won’t give photosensitive epileptics seizures. Its a small gesture and I do appreciate it, but don’t worry - one small flash from a camera will not send my brain into override. Just don’t be taking photos from 5 different phones at the same time for more than one pic. Standing and waiting for people to take a photo all at the same time is awkward already because you don’t know who to look at, what to do with your hands, if you should change pose, smile or not, etc. Just take one flash photo and be done, or don’t use the flash at all if you don’t need to. Ring lights are a common thing now, by the way and I love them? Bye-bye camera flash!

I don’t blame anyone for having these types of concerns though. The only time you’re probably warned about flashing lights is when you’re about to watch a news report or awards show where there will be paparazzi and performances will be aired. Concerts are another thing that can be risky depending on the genre, size of the venue, whether its indoors or outdoors (if you’re like me and enjoy EDM music, you’ll have a very low chance of actually attending or watching anything live fdkslbjfdhb). Those things we avoid. But you taking a photo with a once-off flash will be okay, don’t worry. Seizures aren’t triggered by a single flash, but rather multiple flashes in a short period of time. They’re called Hertz and that shit hertz when its between 3-30 flashes per second. Also, fuck strobes, the Incredibles 2, Into The Spiderverse and any other movie that uses these for unnecessary effect.

4. Not everyone is diagnosed with epilepsy in their childhood and though some might grow out of it as they get older, not everyone will. I thought I had been growing out of it on two occasions (see point 3 again and point 9). Some people only get diagnosed with epilepsy later into their life. If you’re diagnosed while young, its easier to adjust your life because you’re growing up with it as your norm and its something you’ve just learned to live with. But for some people, they suddenly have to change their entire routine that they’ve established since they became an adult. Be sympathetic to those with epilepsy in their adult years, especially those who only got a diagnosis. Its not just a disability for children.

5. There are different types of seizures and one that’s commonly misunderstood is the partial seizure. These types of seizures have been mistaken for people being drunk or high (i.e. slurred speech, difficulty standing up or walking in a straight line, etc.), which has led them to getting kicked out of venues for something they have no control over. Swimming pools seem to be a common place for these bans, as well as gyms. Sometimes, these people are still somewhat aware they are having a seizure but cannot control them, which is really scary to think about. I don’t have them myself but I cannot imagine how frustrating they must be to not be taken seriously and instead as someone being high or intoxicated and then being punished for that. Alcohol is usually avoided as it can trigger seizures but when these seizures happen at social events, people can get the wrong idea. If you know someone who has these types of seizures, keep an eye on them if you’re out together. We’re usually only allowed one pint and hardly anyone gets that drunk after just one, so be aware that its likely they aren’t actually hammered but having a seizure instead.

6. Nobody likes being overworked but school, college, jobs and sport can very hard on us. Unless you’ve had a seizure, your teacher or boss probably won’t extend a deadline for you. The latter might even fire you. Chronic fatigue isn’t taken seriously. School is one big memory test in most countries, but for those with aura seizures, their ‘spacing out’ can affect how information they are actually taking in. Side-effects of meds can also make concentration and memory tough, and I hate how forgetful I can be because then I feel like I’m unreliable even though I push myself to give 110% anyway. Some activities like sports and physical education can be more draining than they would be for the average person, and sometimes I’d have to sit out during these activities because I felt an aura coming on after overexerting myself. I wish I could sit out having multiple assignments and group projects due in the same week, but college doesn’t work that way. I wish I could tell employers that I might not have that presentation done by the end of the day, but that wouldn’t go down too good either.

If you know someone who takes longer to complete tasks that might seem simple to you, ask yourself if you’ve ever considered they might have epilepsy or another chronic illness or disability. Don’t assume they’re lazy if they need to take an extra day or two to complete their final essay or have to stop their beep test earlier than the rest of the class. I didn’t know a good average for the beep test was 8-9, because no one ever told me. I pushed myself to 16 because I was scared people would think I was lazy and that I was dropping out to be with the other girls who agreed beforehand. I then ended up having an aura that almost slipped into a full seizure. I also almost had a seizure an hour before my religion exam in my Junior Cert at school. My mum even insisted I stay home and miss my State exam because of it. I still went though, took a bathroom break because I had another aura, and finished with an ‘A’ but had it been a different day, I might not have been so lucky. Its about knowing yourself and your limits, but we aren’t always informed that they should exist and then you end up doing stupid things like me that could hurt you. Likewise, its important to be understanding that not everyone can work at the same pace as you. It doesn’t make the quality of our work any less even if we need more time or energy to do it.

7. Side-effects aren’t always in the short-term. My own meds are advised to not be taken long-term as they weaken my bones over time. I’m 21 now and I’ve been on meds since I was 8. I wanted to reduce my dosage and eventually become med-free last year but the neurologist told me I still had brain activity and needed to stick with them. In fact, they almost ended up prescribing me more even after I had told them I was five years seizure-free. Why? See point 9. I’m lucky though because I’ve only been on one type of med. Some people can take years to find what works and their neurologists will prescribe them all sorts and leave them with awful side effects. Only last year I was chatting with a woman whose meds had caused sudden depression and fits of anger in her after she had been diagnosed and given her prescriptions. She eventually got brain surgery instead.

8. If you have a uterus and/or want to have children, do your research and a LOT of it. Birth control is usually a tough decision to make and often times, it can feel like you have no choice. Its so important to check with multiple neurologists and doctors which form of birth control is the best for you with your medication, because even the slightest new introduction to your meds box can have unpleasant side-effects. With the current medication I’m on, I can’t take the pill unless I want to increase my current dosage of meds as the pairing cancel each other and make me more vulnerable to seizures and other side-effects. I’m not pregnant and yet I have to take daily folic acid supplements because my meds cancel that out too. Every month or two, I will faint or almost faint on the first day of my period and I’m more vulnerable to having a seizure during that time. If I ever want to give birth, my children can possibly inherit my condition or be stuck taking care of me when I should be caring for them. I wouldn’t wish that upon anyone.

This is not to say that people with epilepsy can’t have fulfilling sex lives or raise families. But we just do it at a greater risk that even some neurologists aren’t aware of. I had to tell my neurologist last year why I didn’t want to go on the pill because HE didn’t know it interacted negatively with my meds. I’ve known women who were prescribed the pill or meds BY A PROFESSIONAL that interacted negatively with each other and gave them seizures as a result. It takes ‘find the right method for you’ to a whole new level. If your partner has epilepsy, its so important to discuss birth control and take their condition into consideration. I hear men telling their girlfriends to go on the pill so that they don’t have to use a condom, which is really selfish for a start and also disregards other forms of birth control. Do your research but let them and their own trusted neurologist decide which form is best. You should still be using a condom to protect yourselves anyway! And if you and your epileptic partner decide you would like to have children, do the same process and make sure that they are in a safe position to do so.

9. *TW: DEATH* Threatening (even ‘jokingly’) to trigger a seizure in someone is playing with that person’s life. SUDEP (Sudden Unexpected Death in Epilepsy) affects roughly 1 in 1000 people each year. Even if that person doesn’t die after their seizure, you may have just broken a record they set for days, months or YEARS without a seizure. You just revoked their driving license and they weren’t even behind a wheel. You just prescribed them new doses of medication without any years of medical school.

Growing up, I had countless incidences where classmates would joke about making me have a seizure. If the teacher left the room for anything, the first thing they would do is run up to the lightswitch and fuck around with it. In secondary school, I stopped using the bathroom at lunch because one of the girls thought it was funny to deliberately flick the lights on and off anytime I was inside. She would snicker and call out to me while I was in the stall, asking if it could make me have a seizure. Even after saying yes, she continued to do it. If I did end up having a seizure in that bathroom, god knows what could have happened. I had a seizure in a bathroom before and was lucky I only hurt my jaw as my head slammed against the wall. Others aren’t so lucky. Injuries from seizures can be brutal, just like OP said. Yeah, you might not kill them by triggering a seizure, but what injuries do they have to deal with after?

Imagine playing a game for years and you spent ages collecting all the items, defeating every boss and proudly showing off the trophies you won. Now imagine someone suddenly pulls the cord as you’re playing; your game freezes, the screen shuts to black and when you try to frantically start it up again and see where you had remembered to last save, it says your data is corrupted and deletes everything without your permission. It doesn’t matter where or when you saved. You have to start your progress all over again. You can try memorise the strategies from before but the game switches things up and suddenly you’re hit with a difficulty spike out of nowhere. The person who joked around and pulled the plug doesn’t have to do anything. And if they wanted to, they could do the same thing again and again. Don’t be that person. Be their Player 2 and help them. If they need to go into a dungeon but they’re scared to be alone, offer to cover their back. If their health is low, find them a safe spot and let them heal. The same goes for appointments and seizures. Its not a multiplayer game by default and while they can power through solo, that doesn’t mean they don’t need help if they’re ever stuck.

10. To end on a more positive note, there are lots of successful people out who have/had epilepsy and you probably never even knew. Cameron Boyce’s passing brought attention to SUDEP and celebrities with epilepsy but did you also know about these people and their own cases and seizures?

Prince

Elton John

Lewis Carroll

Danny Glover

Lil Wayne

Neil Young

Hugo Weaving

Charles Dickens

Julius Caesar

Vincent Van Gogh

Theodore Roosevelt

Adam Horovitz

Susan Boyle

Rick Harrison (the Pawn Stars guy!)

And some who are not confirmed (due to medical practices of the time) but are suggested as a result of numerous seizures:

Leonardo da Vinci

Michelangelo

Edgar Allen Poe

Agatha Christie

Socrates

Napoleon Bonaparte

Aristotle

Alexander the Great

Epileptics are humans, normal people just like you. And like you, they’re capable of great things too. If you think about making a crude comment to someone with epilepsy, think about these people and ask yourself if you would say the same things to them. 

If you read all of this, comment with a ⭐️ and please reblog to spread awareness. Whenever we talk about epilepsy, we start and stop the conversation at seizures. Its good to bring awareness to the other things too because its something that affects every part of our lives. Its an invisible disability but that doesn’t mean we are hidden from the disability community and discussion!

#actually epileptic #epilepsy awareness month #epilepticon2020 #just epilepsy things

[punksarahreese]

how does sarah cope with the pain at work? also has she been diagnosed with anything or is it a classic case of “you’re a woman. pain is natural. have some Tylenol”

Screams that’s literally how my doctor treats me :) love it when men think hysteria is still a plausible diagnosis

Okay so Sarah’s current diagnoses include

PTSD, anxiety, and a presumed depressive disorder (Probably all as a result of the PTSD)

Chronic migraines which she had had since she was 7 :(

Chronic costochondritis/Tietze syndrome which is where the cartilage/joint of the rib cage becomes inflamed and it mimics heart attack symptoms

A heart arrhythmia that causes severe cardiac events sometimes (shortness of breath, chest pain, 160+ BPM) but her rhythm is always normal and there has never been any indication of a defect so her tachycardia is labeled as “idiopathic”

(Which Ava hates because she knows there might be an underlying issue so she’s trying to help Sarah find answers)

Widespread musculoskeletal pain and she gets random fits where her muscles spasm and tremor

She made the educated guess that she has fibromyalgia because her two preeexisting diagnoses are related to the condition and also the musculoskeletal symptoms among other things makes sense

She is trying to see a rheumatologist to get a proper diagnosis but it’s hard because fibromyalgia is one of the most controversial diagnoses

Because like... people don’t believe pain :/

She sees Sam regularly for her migraines because she has some stroke-like symptoms that raised concerns

So she needs some close monitoring just in case

But he thinks they’re just hemiplegic migraines which is rare but would make sense considering she has no actual indication of ischemic strokes

Also she was Connor’s patient for a bit because when she first mentioned the debilitating chest pain that radiated down her arm and the heart palpitations ava was like ????????

Sarah: *has heart attack symptoms* this is fine :)

Ava: Sarah Reese what the actual fuck

After scans and blood tests and EKGS though connor concluded that she was not having a heart attack

And he spoke to some pain specialists who reviewed her symptoms and diagnosed the tietze syndrome/costo

Which sucks because it’s supposed to be something that goes away after a few months but Sarah is just... living with it on and off for years

ANYWAY

Those are her diagnoses/issues

As for how she copes at work

Advil is her best friend

She has a pill organizer filled with Tylenol, Advil, muscle relaxers, and anti-nausea meds that she always keeps in her locker

Because yeah she works in a hospital but it’s always good to be prepared

Honestly she just pushes through the pain most days

Telling herself “just one more hour. One more patient. You can’t give up now”

And she does that through the whole day

Forcing herself to focus and subsequently expend all her energy

Because chronic fatigue is a symptom of all her diagnoses so she’s just... always exhausted :(

Coffee definitely helps

Well it doesn’t make the heart arrhythmia any better but try telling Sarah she can’t have coffee it won’t end well

She has a multitude of braces for literally every joint and depending on the day and how she woke up she may be sporting a different one every few days

Wrist and knee braces are the most common because repetitive moments are killer on her joints

The most annoying thing is when her hands are aching for no reason and she’s tremoring so she can’t safely insert an IV or something and she just gets so frustrated

Unfortunately she has a habit of pushing herself way too far

Going to work even when she’s having a big flare up

Not taking her perscription painkillers because she doesn’t think she “needs them” as is “saving them for a worse pain day”

Pushing through the brain fog from a migraine and the dissociation that comes with it

Forgetting to eat after taking her meds and being nauseous all day

She just works so hard to be a normal doctor and Ava hates to see her do this to herself

So obviously she is the one who has to be like

Sarah for the love of God slow down and rest

And sometimes it takes a lot of persuasion

And Sarah gets frustrated

But she knows Ava does it out of love and concern

And she is really grateful for her because Ava is her rock

#all of these diagnoses are mine 🤩 #except the PTSD thats Sarah’s lmao #I’m just anxious #anyway #this is incoherent I’m so sorry hsjsks #anyway hugs for sarah #chicago med #sarah reese #ava bekker #reesker #chronic #spoonie!sarah #my aus #my-writing #mutuals #asks #crockettstiddies #long post #I’m too lazy to go on my laptop and add a read more 😔

[danzinora-switch]

A Worthy Cause

I’ve long harbored the belief that everyone has a cause or issue that they’re best suited for. When I read stories about people who visit the elderly in nursing homes, or engage in prison ministry, or march to a protest they believe in 100% I am always in awe of their commitment. Some people are very passionate about addressing homelessness. Some are equally passionate about LGBT youth. Some devote their lives to helping disabled veterans. Some travel the world to provide aide in developing nations. Some want to save the environment. Everyone has gifts and strengths and I believed everyone has a different cause or mission where they can use those unique gifts and strengths (not that I believe everyone becomes a die-hard advocate, but that there is a particular advocacy for everyone).

I’ve also wondered about when I would finally learn what mine was.

As heart-wrenching as any cause is, I do have a tendency towards apathy and cynicism. Compassion fatigue sets in extremely quickly for me. My nihilistic side often wins out whenever the news plays yet another disaster, or tragedy, or chronic problem in society. Caretaking is not my forte. My heart doesn’t actually go out to so many marginalized groups. While I understand that problems need to be collectively addressed, my affective empathy is still pretty low. After all the protests from 2015 to present, and my college years, I began to think that nothing would ignite my soul like it did for so many other people marching to so many things.

And then Nickelodeon canceled Rise of the Teenage Mutant Ninja Turtles.

Honestly, it may sound really small in comparison to all the great causes I’ve mentioned: you won’t get fired up about poverty, women’s rights, or injustice, but a kid’s show does it for you? Are you that shallow? THERE ARE STARVING CHILDREN IN AFRICA!

And yet, I’m doing things I’ve NEVER done before: I’m signing petitions, I’m donating money, I’m active on social media, I got a TWITTER for crying out loud. I’m sending emails, telling my friends and coworkers what’s happening, making content and if we had in-person protests for this I would 100% make a sassy poster and be there. I don’t feel that fire dying anytime soon, either, which is amazing.

Maybe I am shallow. Or maybe the small causes are important, too. Maybe the big issues ignite my cynicism and will always be there despite our progress, but for this one, small, thing yes maybe I CAN make a difference. God knows I want to.

Storytelling has always been a part of me. I’ve written little stories since I was a kid. I started video editing at 14 and discovered fandoms at 16. I went to film school. I’ve been in love with movies and TV shows and trailers for most of my life. I’ve even been on the Nickelodeon lot. Most of the shows I love had already ended their run by the time I found them - Firefly, Star Trek: TOS, and Hogan’s Heroes to name a poignant few. Rise of the Teenage Mutant Ninja Turtles is the first show I’ve been this obsessed with that is actually CURRENT - and I’m alive here and now to actually do something about this crummy decision.

When asked if I could go back in time and change one thing, my answer for the longest time was ‘to give Hogan’s Heroes a series finale’ or ‘Star Trek more seasons’. But the past week has offered me a strange perspective: I would change my answer to ‘make sure Rise doesn’t get canceled’ but I can’t commit to that because IT’S NOT OVER. This isn’t the past, this is NOW. We have the chance to alter the timeline. No wishful thinking, just action. It’s... exhilarating, and I think I finally understand what all the other people protesting for change feel.

For such a tumultuous year, Rise is something good and precious. The world is literally going to shit, but being able to sit down and simply enjoy a wholesome, hilarious, and well-done cartoon has been an immense joy. I’ve felt like a kid again, laughing off all the struggles of the adult world for 20 minutes at a time. This show single-handedly inspired me to edit amvs again, a hobby that put me on the path to film school but that I had not indulged in for 3 years. It also snapped me out of a daze and gave me writing projects again. I’ve been able to share the show with my mother, and it keeps us connected even 5 states away. And I’m not the only one - I’ve seen so many other wonderful people in this fandom who were also inspired, lifted out of darkness, and brightly engaged by this humble show. It has actually changed lives.

And maybe that’s something we forget as we get caught up in all the latest newsworthy angst. That at times when humanity was going through darkness, it was the little things that kept us going. Dancing. The movies. Looking forward to the next issue of a comic book. That one pet or houseplant that you have to keep alive that becomes your reason for staying alive. A funny bird outside your window. Let me tell you what happened at lunch today!

Perhaps the small issues are just as important as the big issues. It’s probably not even a competition. But for me, I’m glad I’ve found my cause. I’m glad I finally get to experience this passionate fire. It seems there IS something I’m suited for, after all. I’m not an apathetic monster. I’m not a cold robot. There are things in this world I care deeply about.

So thank you @nickelodeon, @netflix ; this warrior just found her spirit.

#saverottmnt 

#saverottmnt #rise of the teenage mutant ninja turtles #essay #protest #rottmnt #supportrottmnt #this confession brought to you by 3am thoughts #long post

[chronicillschronicpills]

so hey, i just found ur blog and tbh im really looking for any advice i can get on dealing with chronic pain and fatigue? i dont mean to be a bother sorry! im just slipping into hopelessness with some people and even doctors not taking me seriously. i have done hours and hours of research and i think my symptoms may line up with sjogren's? it's just so hard for someone to look at my symptoms (even though they have been worsening since october 2019) since absolutely nothing shows up in my tests.

Hey!

This is not a bother at all. Also sorry if this is a late reply, my Tumblr never notifies me when I get messages so I have to manually check! 

So to start off with, I know exactly how you feel. I have been there. It is truly horrible and I am sorry you have to deal with this. There is a massive problem with doctors not taking young people, especially women, seriously when it comes to pain and fatigue. It’s always ‘stress’ or ‘depression’ or ‘in your head’ and it’s just really infuriating. It’s a terrible place to be in. 

I think this is a really important post. Its going to be LONG. 

I’m going to first address the issues with doctors not taking you seriously. 

It took me 7 years to get a diagnosis. This is NOT unusual. In fact, I’m almost positive that the average diagnosis time period for someone with lupus is 6 years. My first piece of advice is SELF ADVOCATE. This sounds easier than it is and it takes a lot of practice. I used to just burst into tears if I was trying to explain anything to a doctor. It is easier to self-advocate when you are calm and are clear about what you are going to say. To help with that, I suggest KEEPING A JOURNAL of your symptoms and have all your medical records in order. Make it in depth. Before an appointment, WRITE DOWN WHAT YOU ARE GOING TO TALK ABOUT. This way, you won’t forget anything. I like to reverse in my head how it is going to go. You really have to TAKE CONTROL of the appointment. You are allowed to demand certain things. I had to demand a referral to a rheumatologist when one of my shit GP’s refused to. He ended up giving me one, and on my first appointment with the rheumatologist, I was diagnosed and put on medication. It is important to DO RESEARCH but not too much. Don’t let the doctors know that you’ve done too much or they will think you’re a hypochondriac or something, maybe hurt their ego, who knows. You need to have a GOOD GP. If you don’t like your current GP, find a new one. Do research on good GP’s in your area. Ask your friends and family about theirs. Also, the best indicator for a doctor to know where you are at in my experience is saying MY QUALITY OF LIFE IS POOR. Describing your symptoms in-depth and how they affect your day to day functioning is important. Lastly, I always think you should BRING SOMEONE WITH YOU. Bring someone you trust, someone who knows about your condition. This is useful because they can back up what you say, they are there for support, and a doctor is less likely to treat you like shit with someone else present. You should also brief the person who is coming with you about what you would like them to do in the appointment. Do you want them to just stay quiet, or would you like them to sometimes talk or want them to take control of the appointment? 

My advice for chronic pain

Pain killers (it make seem obvious, but they really help). This is a touchy subject for a lot of people, as there are obvious problems with long term pain killer use, but they are great for PRN. There is a possibility a doctor will not prescribe you with them though. 

NSAID’s (Nonsteroidal anti-inflammatory drugs) can be helpful for pain

Tricyclic antidepressants are used to treat chronic pain

Topical treatments; I use tiger balm patches. These are the ones I use: https://www.amazon.com/Tiger-Balm-Plaster-Warm-Patches/dp/B07Q6WN9ZM. They help tremendously for me. I sometimes used tiger balm cream. Other good ones are Icy Hot vanishing gel and bengay. 

Pillows: I used 12 pillows to sleep with. I know it a lot. But it works really well for me. Experiment with pillows; between your knees, under your arm, behind your back, under your hip, under your legs, etc. I literally sleep on a bed of pillows. 

Reduce stress. High stress= more pain

Join support groups; I am on several FaceBook pages that talk about the issues that I have. This blog on Tumblr has been incredibly helpful. It’s good to have people who understand what you’re going through. 

I cannot exercise, but some people find it useful (i never did) 

Some people find meditation helpful (i do not)

Massages help but obviously, that’s not always accessible, they are expensive etc. 

My advice for chronic fatigue

Medications; depending on your diagnosis, some medications can help with chronic fatigue. The medicine that helps with my chronic fatigue is Plaquenil which is often used to treat fatigue-related with Sjogren’s. There are other medications that can help with the quality of sleep such as benzodiazepines and tricyclic antidepressants. 

Do not do too much activity (that has helped me, but for others moving and doing exercise and movement can help) 

Have a routine 

If you study, make sure you tell all your teachers and lecturers beforehand that you have a health issue that may impair your ability to come to class all the time or hand in assignments on time. In my experience, they have always been really helpful and understanding. 

I also studied a lot from home, using online resources. I also took fewer papers at university to make it more manageable for me.  

Look after yourself, make sure you eat good foods. A lot of people try different diets but they haven’t helped me personally but have been beneficial to a lot of other people. Definitely talk to your doctor about this though. 

Give yourself a break, do not be too hard on yourself if you cant do the things that others are doing 

Some doctors consider stimulant medication but I have not tried this

Lastly! Sjogren’s!

I know a bit about Sjogren’s because it’s related to the disease that I have. It is an autoimmune disorder. If you think you have Sjogren’s then you need to ask your GP to do blood tests associated with Sjogren’s such as rheumatoid factor, ANA, antibodies (anti-Ro (SS-A) and anti-La (SS-B) antibodies). Ask for a referral to a rheumatologist. SELF ADVOCATE. Do not stop until you find your answer. Also, get routine bloods. It is common for them to change over time. I

If any of my followers have Sjorgens and have any advice, please comment!

I hope this helped, I wish I could come up with more advice on how to deal with chronic pain and fatigue, but I know it is really hard. If any of my followers made it this far and have any tips, please add to this post and reblog it so that more people can see and add to it.

EDIT TO ORIGINAL POST

This information was supplied by a tumblr user called @graciecatfamilyband who actually has Sjorgens. They said:

 Blood work and other tests CANNOT rule Sjogren’s OUT. This makes it very difficult to diagnose 

30% of Sjogren’s patients will have negative blood work.Other tests may also not be sufficient, depending on where you are in your disease progress

Doctors are often undereducated about Sjogren’s and don’t see it as as serious as it is

Many patients will have neuro symptoms as well as other significant symptoms like fatigue before their lip biopsy focal score is 1 (which is considered “positive” for Sjogren’s).

https://www.sjogrensadvocate.com/ is a great resource for people who think they might have this disease. It also cites research articles you can show your doctor if you need to

They also offered to help out anyone who want to reach out to them if they have questions or need advice about Sjorgens and also, with diagnosis’s.

Keep in touch, let me know how it goes. Don’t be afraid to reach out and dm me.

Love Aston 

#ask #personal #asks #lupus #sjogrens

[scowlowl]

Hi c: I remember a post, I think it was from you, about long covid and getting it? Was that you? A friend of mine is struggling and I was wondering if you had any advice about what she can do :< Thank you!!

Oh no, I hope your friend feels better soon! That might have been me, I think I posted about it here a few times and there have definitely been twitter threads.

Standard disclaimer stuff: I am not a doctor. What I found helped me might not help someone else. Long covid is kind of fucked up to deal with because it seems to hit everyone in different ways, in different areas, and months later something that wasn't a problem before can suddenly become one. The long haul groups talk about it as something that feels like it moves around the body, like a total shit gremlin.

The thing that helped me the most initially was joining the facebook groups with other people figuring shit out. This was back April/May for me but they're still very active and full of people sharing resources.

Survivor Corps is I think the big one and they've been the ones reaching out to media and doctors to try to gain some recognition with the medical community initially (as far as I know, all kind of a blur tbh). There's also a long covid group here, and if your friend searches for like, long covid + the country they're in there are usually more local/regional ones for resources closer to home too.

Because we don't really know what specific mechanism is triggering a lot of the long covid stuff yet, most of us are just treating symptoms. Some people have been diagnosed with mast cell activation syndrome (MCAS) and I don't know diddly squat about that but it might be something for your friend to look into. My whole thing has been inflammation and my immune system basically attacking itself because immune systems are both very complex and compellingly fucking stupid. Not to victim blame the immune system or anything.

What helped me depended on what was going wrong at the time, obv, but it means it's a long list.

This is just going to be a brain dump, sorry.

- I never had pneumonia. Mine started in my throat, probably damaged my vocal chords, but never turned into pneumonia. I still had shortness of breath, pressure in my chest, and my oxygen levels dropped. I could breathe but with great difficulty and described it to the EMTs as "breathing is like work." It took all of my energy and focus to breathe in enough. If you are that this point, ever, like, literally fucking ever, call an ambulance.

- Tylenol for a fever. 

- Blood thinners if necessary, I never had any but we know now that a lot of problems are blood clot-related. Tbqh my blood is more thin now than anything but I always had anemia and some sort of “your blood is too small actually?” problem and we don’t know why. I just bleed a lot and bruise easier now. 

- If they try to tell you it's anxiety or in your head or you're not that bed, tell them to go fuck themselves and go to the hospital. Get tested if you can. A lot of the problems long haulers ran into was that we got sick before tests were available, or we were talked into staying home by the emergency workers, and we never got tested. This opens the doors for doctors to tell you it's all in your head, psychological, anxiety, allergies, etc. Just. Go when you first feel sick if at all possible. Get tested before it turns into long covid. 

- I was not sure in the beginning what "shortness of breath" or "pressure" actually felt like, and it made me delay calling for an ambulance for a few days as well. For me, it felt like there was an elastic band of pressure around my lungs. I couldn't fully inhale. My diaphragm was fucked in ways I still don't understand. My lungs also felt heavy, like there was a weight on them or like my lungs themselves were too stiff to inhale. That all counts as pressure/tightness/shortness of breath. So does air hunger, or feeling like you want to be swallowing air.

- I know I'm being super obvious but seriously shortly before I got sicker, I hit up twitter to ask what "pressure" was supposed to feel like because I couldn't tell if what I had "counted."

- Breathing: lying on my stomach with my chest propped up by pillow, in bed helped. So did  pursed lip breathing: here.

- I was prescribed salbutamol initially, which did help with the worst of the wheezing and opened up some of my lungs so I could breathe easier. When I went to the ER again a couple months later, they gave me like 5x the usual dose and sent me home.

- I'm also taking Flovent/fluticasone twice a day for asthma maintenance.

- Histamines are a problem for a lot of people. Some develop a histamine intolerance, which can be helped by eating a low histamine diet.

- Antihistamines helped me the most. I was taking Allegra-D daily. Pepcid AC also helps, because it targets a different kind of histamine. There was such a run on Pepcid when this started that it was actually impossible to find in my area and I had to order some online. 

- I was recently prescribed Singulair and it has been life-changing this past week or so. As far as I know it's not really an antihistamine but blocks/inhibits a particular receptor involved in inflammation that comes into play when allergies do.

- Electrolytes. I don't know why, but my electrolytes are permanently fucked and too low now. If I don't go through like a litre of gatorade a day (or whatever, pick your brand of supplements), I am even more tired and brain foggy than usual. Helps a lot.

- Inflammation is a major problem all around. Sometimes I go for the naproxen or advil and it will help any really major acute flare-up now (like, I can feel when my gallbladder is getting inflamed and about to spasm and I can cut it off sort of), but mostly it's also daily maintenance. I take cucurmin and black pepper daily.

- Other supplements: vitamins A & D, a multivitamin, NAC.  

- CBD oil. This worked wonders for me for a lot of the side-effects of covid, costochondritis and shingles pain especially.

- Diet. I mentioned the low histamine one above. Other people have had some success with a low inflammation diet. Some folks also have so many GI problems that they basically ate chicken and rice and slowly reintroduced foods to see what would trigger something. I appear to get super fucked by nightshades now, e.g. Alcohol is an absolute no. I had to cut caffeine for months because of my heart. (No caffeine/alcohol/red meat was my doctor's first and best advice for heart stuff at the time.)

- Speaking of the heart stuff, if your friend is dealing with that: electrolytes again. I have pedialyte freezies that I would suck on whenever heart palpitations started and it helped calm it down some. My heart was so, so fucked for months that whenever I ate or stood up or sat down it would hit like 140bpm and I had to spend an hour moving as little as possible or I'd just about pass out. There are a LOT of long-haulers now dealing with POTS and I can't really speak to what helps that in particular but if your heart is messing up at all: call a doctor. I still don't know how damaged my heart is from all of this because doctors and wait lists, etc. Get a jump on that.

- Insomnia was absolutely the worst I’ve ever had and I’ve had lifelong, “I’m awake for three days wee” insomnia. The Singulair knocks me right out at night, so that's a bonus, but there has not been a single night since getting sick where I didn't have to take something to help me sleep. I was on Zopiclone before getting sick, at least, but seriously talk to someone about insomnia if necessary. The sleep deprivation alone was making so many things worse.

- Brain fog? Brain fog. I don't have any or many answers for this. My short-term memory is wrecked and usually I'll remember something 2 weeks later, so I live my life on a 2-week lag now.

- Related to brain fog, fatigue. Don't fuck with it. Do not. Chronic Fatigue and Myalgic encephalomyelitis are both brought up often with long covid. I am dealing with it but don't know what to say about it yet because I haven't had a single doctor give a shit thus far. I've spoken to a relative who's an occupational therapist about it and her most helpful advice was about "energy envelopes," which is basically spoon theory. If you feel tired: stop. If you don't, or if you try to push through, we relapse hard and fast and you can pay for one day of walking 10 minutes too long with weeks of being stuck in bed. It's miserable. It will take longer to get back to normal. Some of us can exercise and feel amazing after; others are exercise intolerant and it wrecks them. (I feel best after like, 10 minutes of walking and sunshine right now, which is after months and months of being bedridden.)

- Treat mental exertion the same as physical. Doctors told me to drink Gatorade after mental work because it's still work, and it has helped a lot for whatever reason. It also helps to work on one thing at a time, take a break, switch gears, take a break, etc. I can't multitask anymore anyway.

- Eliminate whatever stressors you can. Stress will make everything worse. 

- It comes and goes. Every relapse was a bit shorter and a bit easier for me, so that now when I fuck up it's like 2-3 days instead of weeks, but it's a rollercoaster.

- It can be random as hell. For about two months my gallbladder just decided to up and die, basically, and we were talking about having it removed. And then it was fine. Hasn't bugged me again lately. I know I said it's symptom management, but it's also like... symptom chasing and trying to figure out what's happening every time the sun rises. This is also exhausting. Everything is exhausting.

- Brain shit. Some of us have serious trouble reading. Sentences swim together. Letters wouldn't turn into words. I took this as a Challenge and started reading children's books and then Animorphs again, like... slowly, as much as I could do without pushing it, and it's still not perfect or great but it was an okay place to start. Honestly the hardest part was the embarrassment and going from a PhD program to reading kids books, but. Do what you have to. Do what you can.

- Sticky notes and labelling things around the house so I could see them when I needed them. I am not fucking around when I say brain fog. I can open the fridge, know I have milk, know it is in the door, and literally not see it to find it. I will put the cream in the dishwasher. I will spin in circles in the kitchen remembering and forgetting and remembering why I’m there again. Sticky notes. Also: journals, index cards, write literally everything down if you need to remember something. Put it somewhere obvious. I like writing on the bathroom mirror for the important shit. (Don’t use lipstick.) 

- Unsurprisingly, a lot of us are struggling with anxiety and depression. Don't let doctors get it backward: it's not anxiety making us sick, it's being sick and ignored and fighting to be helped that's making our mental health worse. So many doctors tell us it's all in our head. I did not move across the country because I was too sick to take care of myself because of ~allergies~ or ~anxiety.~ Fuck off.

- So, so many people report that they relapse whenever they menstruate so if your friend is in that group, they might want to prepare to feel like fucking trash every 4 weeks no matter what they do. I don’t have any advice on this one, I’m sorry. There are a lot of people discussing it in the FB groups, though, and those are searchable for symptoms. 

- So... a tl;dr list of things that might help: anti-inflammatory diets, anti-histamine diets, pepcid AC, allegra or other allergy meds, vitamin A/D/E, multivitamins, electrolytes and gatorade, albuterol, fluticasone, zopiclone (or anything that helps with sleep), CBD oil, singulair, anti-nausea meds (buscopan), muscle relaxants (spasming gallbladder). Rest, so much rest, do not fuck with The Rest if you can help it. I also encourage just getting high and edibles as much as you can because it sure helped me chill out big time and I think was a big factor in my recovery, at least as far as helping me calm down and helping my heart were concerned.

- The actual most helpful part outside of what to take or do was other people. Friends would go out and get me things when I could not, including like, cat food deliveries and all. I had co-workers ready to step in to take over my work on days I could not. I had friends calling doctors because I was too tired to fight them or self-advocate. I don't think it's an exaggeration to say they helped save my idiot life this year. Literally. It's a lot to ask of anyone but it's also that level of support that some of us need, and there shouldn't be any shame in it. (I still feel bad about it anyway but what are you gonna do.)

Depending on where you live, some places are setting up long-haul covid clinics to help people. Reports are mixed: some demand you had a positive test even if you were sick before tests were available. Some people are getting a lot of help regardless. Some are being sent home and told not to come back anyway. It’s kind of a gamble right now but either way, there’s at least some medical recognition making headway now so my fingers are crossed.

Anyway you basically sound like a good bean and your friend is lucky to have you asking around. I have absolutely forgotten something at some point in here because, well, brain fog and no memory, but if you have any questions or want something clarified please just ask. Stay safe!

#replies #covid-19 #long-haul covid #long post #looooooooong

[technicolordeams]

So some things happened this past week since I wrote my last entry and I'm rethinking my stance on leaving or not. I was able to talk to the one girl who is befriending me and my pastor had a long talk about what makes me me and what I struggle with. I followed what my therapist told me to be which was to be more assertive. I felt very awkward and scared to do it but if I didn't, I'd end up right back where I was feeling anger and abandonment. So for now, I'm still on hold on what to choose to do.

But a couple other things popped up. Not too big but unsettling. My mind just blanked on one of them so I'll just type about the one that's stuck out the most to me right now since it happened literally within the past hour.

So obviously I have problems eating enough to keep my weight stable, let alone gain any without a LOT of work. I've been struggling with it since my gallbladder decided to take a shit on me and demand to be removed which happened on my birthday. During that time I started getting suicidal again and I hadn't dealt with those intense emotions regarding it in several years. But since December it decided to rear it's ugly head and bite into me as hard as it could ever since. It's been 8 months now with very little improvement. And during that time span my health has tanked. I developed breathing problems after my surgery which was horrific enough as it was (imagine not being fully awake but aware that you are out of control of your body and unable to utilize your coping techniques. Just like having a massive panic attack like seizure feeling but you are barely able to be aware of anything besides the viceral fear and blackness because I couldn't wake up. Just... Out of control. And you have no idea how long you were in that state before the nurse could sort of pull you out of it and even communicate more than like two words and slowly peek my eyes open a fraction. Yeah, that's what happened. I had major fear over that for at least a month. Sleeping was hard enough from the surgery and adding in that... Yeah no.) Anyways, since that started up and obviously after surgery it's hard to eat and stuff like that normally. But after the surgery I was (am) having breathing problems. I would have endless coughing fits that would even hit me and make me unable to take a full breath without coughing horribly whatever air I could get right back out. It also made me almost throw up several times (which is my biggest phobia that triggered my eating disorder to go out of control and send me into hospital stays and feeding tube hell). So at least I lost 10lbs since the surgery or even before that. I creep closer to 15lbs though most likely. I haven't been keeping track of it very much because of how much distress I've been dealing with. And I've been dealing with A LOT. Things I wonder if I will be able to get up from without more intense medical help that I probably can't get because of covid.

I've gone through several tests to see why I'm having coughing fits and every answer is that they don't see anything wrong. Well, the ENT appointment I went to the day before I went to see the pulmonary doctor really screwed me over tbh. The ENT doctor gave me steroids that day that I took that same night and told me that the pulls wouldn't affect the asthma test they were going to perform next day. It did. So I had to wait like two months before I could go back and be re-tested. But then covid hit and those practices have been closed ever since. So I can't get an accurate reading on what's going on. They did spot that I had some breathing abnormalities but because of the steroids, they couldn't say for sure. Mind you I had to literally book these doctor appointments and tell my dad you have to take me to these because he didn't think it was that important. Which has pretty much been like everything doctor related that has come up this past year. Just had to put my foot down and tell him I NEED to go to these and I'll be going whether you agree with me or not. Which adds to the distressed feeling and like I'm overreacting and being too paranoid or some shit. Also because I couldn't get actually tested for asthma properly, my regular doctor had to prescribe me with an inhaler but insurance won't help because I have not been diagnosed with it. So I had to cough up (almost literally) over a $100 for medicine that we don't know is right for me or not or whatever.. so that's like $60 every two months? Idk. Which is a lot considering I have a bunch of other bills to pay which includes when I got my wisdom teeth removed (ALL FIVEEE because I'm that extra) which cost $3,000. I have to pay my mom back for another at least year? I don't even know anymore at this point.

I've also been dealing with vision blackouts recently where I almost pass out when I get up here and there. My blood pressure tanked and went to like 70/52 and pulse all over the place. That's better now at least. Chronic fatigue, dehydration, can't sleep very well... Etc. Vitamin D and B12 are on the lower side of the normal range and my body isn't producing enough carbon dioxide.

Now along with all of this bag of shit, I have lost every friend I thought I had and the feeling that I can call anyone friend anymore. I am terrified of calling anyone a friend now because I am afraid that if I let someone in, I will be taken advantage of and lied to like I have in almost every type of relationship I've had since I was little. I am afraid of speaking because I am afraid what I say will offend or upset or whatever someone when all I do is mean well (usually unless you're an asshat). It has made me regress back to my childhood where I couldn't trust anyone and I had nobody except for a penpal on the east coast to keep me company through msn messenger, emails, or rarely phone calls. She was the only one I could call my best friend for a long time and the only one I could open up to about things and the only one who tried to consistently cheer me up when I was hospitalized at 16 by spamming me with emails. I will forever love her and no matter how far we've drifted apart over the years, I will still love her and respond to her as quickly as possible if she ever needed me again. But if we never talk again I'm okay with it. We were there for each other during really bad times in out lives and I like to think we kept each other somewhat sane. She has done more for me than I could ever ask anyone and I'll always be grateful to have "met" her.

But since all of the shit happened with my ex friends... I don't feel safe to get very close to anyone or open up to anyone. Even the girl who defended me and stuff when I was being bullied and manipulated hardly speaks to me now. I wouldn't want to talk to me very much either if all I had to talk about were extremely negative and talk about dying. I can hardly go to my parents about things. I am home alone with just my puppy that likes to get into mischief about 80% of the day. Hardly interact with people online. Usually I just now watch YouTube videos about what's going on with people. I find very little satisfaction playing video games or anything honestly. I have lost art, something that I loved dearly and way too much. I cannot go out most often due to my health. I am stuck at home. I can hardly go outside too. It's too hot (sometimes heat can trigger flashbacks), I found out I'm allergic to grass, and last week I broke out in hives from God knows what so I can't go outside even more. I was put on steroids again for 6 days which causes your immune system to weaken so it won't produce histamines that causes the INSANE itch because every topical and oral medicine OTC would barely help at all. All I do each day is very basic hygiene, sleep when I can, eat as much as I can, and try and relax while taking care of my puppy.

Only two good things has come from all of this: one, I can finally work with a trauma therapist. Hopefully she can help me. Two... Ah I forgot what the second one was actually. Maybe being able to talk to my psychiatrist more frequently? Not sure. I'm very tired right now again lol.

All I know is that I feel very much alone and there's nothing I can do about it. The world outside is extremely dangerous and I am trapped inside my mind too frequently. And there is no extra help I can get.

So all of this led up to my main grievance for today- so far at least lol long ass story to tell just to explain what I'm upset about. My mom earlier asked me if she could give me advice. I told her it depends on what it's about. But she said it anyways. Told me to check my weight each week. She knows I'm not in the most stable state of mind and she knows that me checking my weight constantly can cause a panic attack of it goes down. (thankfully it hasn't really in a month. Only reason why I know is because I had to go to my doctor's twice the past month) I told my dad what she said and he just told me to say okay and leave it at that.

I know I don't want to go back to the state I was in in 2017. I don't want to go through that hell again. Even if I did want to, there'd be way more restrictions with the threat of covid ravaging our place and infecting everyone there. When I pass the eating disorder clinic that I was forced in when I was 16, there is literally nobody there. Maybe a couple cars but they obviously are not treating kids right now. I may be wrong but it would be very dangerous. I know over at the ERC I went to in 2017 is extremely limiting any visitors from coming. The apartments when you graduate to living in temporarily while you go to just a day program only allow maybe two people to stay there at a time and instead of walking to the van pickup spot, they pick you up at your apartment. Psychiatric wards here, or at least one of them that my therapist and I talked about going to, is still slightly operational, but it's over Zoom. So you literally can't get very good support. If you fall off the deep end while at a meeting nothing can be done to help you right there and then if you run away from the meeting.

My psychiatrist told me that if I do feel that I'm in grave danger (I think the trauma therapist I met also said the same) was to go to the ER. But I am afraid to go to the ER and then be turned away quickly and also take a chance that I might catch Covid while there, not to mention the price... And since my parents are essential workers, any one of us could come down with it at any time or be a carrier without knowing. So I'm isolated from people in real life and I don't feel safe talking to anyone online as well. Even if I had someone who wanted to talk to me to begin with that isn't some creepy horny guy wanting pixel sex... I can't think of anyone who I could potentially talk to about anything in my life... I'm just so lost and afraid of both the virtual and real world... Who can I turn to besides my therapist, psychiatrist, or maybe parents depending on what is bothering me, and of course God? I'm told I need a support system. But I can only talk to the doctors so much and my parents aren't very good at being compassionate... I have no one.

I also think about how badly I want to be hospitalized for a little while just so I can get fluids and rest and proper care but that most likely will only happen unless suicide was a big risk.

I am utterly alone...

If anyone reads this long post to the end, you're a crazy human being. xD Going to stop rambling now and put the dishes away and put the pup away for his nap and try and get one in myself.

#ptsd #trauma #depression #lonely #loneliness #trust #no trust #fear #mentally ill #mental illness #mentally tired #physically exhausted #sick #sick girl #sickness #weightloss #eating disorder #arfid problems #arfid #suicidal

[arabellaflynn]

Hello, all. It has been a rough pandemic.

As you may have figured, since I am in the performing arts, I have been completely out of work since this shitshow began. The earliest venues will open up here in MA is September, which is not helpful for me, because I need to be out of my current place by 8/31. No one will rent to me on my Patreon income, so I've been trying to figure out how to supplement that with other online work.

My first thought, frankly, was camming. I'm attractive and I know that, and I don't care about being naked in "public". I have a lot of opinions on the legitimacy and legalization of sex work, but making a statement would be a convenient bonus; I'd be in it for the tips. As the appliance menagerie on the Flintstones used to say, "Eh. It's a living."

The best camera I currently have is attached to the slightly-less ancient laptop. You know, the one with the broken hinge that won't hold the screen up on the right. Only the wifi on that computer has quit working. The onboard chip was always kind of flaky, but for some reason it has chosen now to deteriorate to the point where it no longer acknowledges a router on the other side of the goddamn wall. Shooting in the living room with an ethernet cable is not an option, because another housemate is already doing that.

I bought a dual-band USB wifi adapter with antenna. It's a Realtek chip -- not gold-plated, but also not total junk. I specifically checked to make sure it worked with Ubuntu Bionic before I ordered. I have now installed three separate sets of drivers in three completely different ways, read everything ever written about this on AskUbuntu, and still the computer refuses to acknowledge its existence. Not even if I blacklist the onboard chip to keep it from falling back into previous bad habits.

The other elderly laptop (with the working wifi) has a cam that tops out at 640 x 480, which I suppose might squeak by as a tiny facecam on Twitch, or for tutoring where no one cares about pixelization. The microphone, however, is crap. It's a tinny omni on the screen bezel that likes room noise more than my voice. I don't have an external microphone, and there's no onboard Bluetooth for my wireless headset. So I bought a USB Bluetooth adapter, which this computer is ignoring as hard as the other one is the wifi dongle. I have a wired headset with a mic, but because this computer is probably mere months too old to know what to do with an inline mic on the same jack as the output signal, it doesn't register at all.

The camera on my phone is potato quality, because that is honestly about how much the phone cost. Ditto the refurb Kindle. Neither is smart enough to keep up with streaming video, which I found out when I tried to do a video rehearsal for something months ago. 

I have no place to do any kind of professional non-entertainment streaming work (e.g., tutoring) with my terrible equipment in any event. I don't own a desk. If a free desk appeared on my doorstep tomorrow, I would have nowhere to put it. My bedroom is small enough to contravene the Geneva Convention requirements for POW cells and I'm basically stuck in here, for reasons of both air conditioning and not having to interact with a house full of people who very much want me gone.

What I do have is a set of working emulators and some free video editing software, so I decided to take a stab at a subtitled Let's Play. I can certainly ramble on for 30 or so hours of Final Fantasy II. At the very least it'll give me something scheduled to do. So I pulled everything out and set it up, only to find that my controller was "pining for the fjords" -- no lights, no acknowledgement from RetroArch, no response to any button presses.

...

...okay, well, at least we're down to a level of equipment I can afford to replace. So I am waiting for the mail carrier to bring me another $10 gamepad, whilst stuck in bureaucratic hell. I'm down to emergency public assistance, which keeps asking me to send them random documents, inconveniently one at a time. Even when I can submit them online I'm required to wait a minimum of 2-3 business days before a human can look at them. I'm trying to not be mad -- they are clearly horribly overworked -- but it also leaves me with a lot of time to do nothing but busy-wait. They've finally decided I'm destitute enough for food stamps, so now I have to sit on my hands until the card arrives in the mail.

The chronic, crushing lack of resources is not helped by (or helping) the fact that I'm just not functioning very well. I was already on the edge of disintegration when the lockdown orders hit anyway; I was taking every piece of work I could find in an effort to scrape together enough for first/last/deposit on a new apartment, and honestly that's more than I can handle. I can consistently get to about 20 hours of "stuff that can't be done while in bed, wearing pajamas" per week, with occasional spikes up to about 30, before I start losing the ability to take care of myself. I skip showers, let my living space become a complete disaster area, and go to bed without dinner because the whole process of choosing something to eat, preparing it, eating it, and cleaning up after myself is so overwhelming that I just burst into tears and don't do it. I fed the rats twice a day and cleaned their cage once or twice a week, but couldn't manage to do the same for myself.

It's difficult to explain to people the state of being physically and mentally exhausted without also being sweaty and shaky from muscle fatigue. Perhaps the single most salient example I can give is lying in bed at night and realizing I kind of vaguely needed to pee. Not like urgently -- just enough that I knew if I didn't, I'd wake up the next day with an uncomfortably full bladder. Then just lying there anyway, not because I thought suffering was noble or I deserved it or anything idiotic like that, but just because taking care of it would involve standing up, walking into another room, and initiating a new task, and I did not have the capacity to do any of those things.

If you suggest I start making a to-do list, I will sit down right now and invent a brand new Blunt Object Transfer Protocol (botp://) expressly for the purpose of punching you, personally, in the face over the goddamn internet. I will even credit you in the patent application. I will not share the licensing profits, which judging from social media right now, would be approximately all of the money on the face of the Earth. I do not need "life hacks". 

What I really need is a case worker, or possibly a babysitter, or just to have shown up at the ER about two months ago, because that is the only way I have ever found to get people to pay attention when I ask for help. Otherwise I get triaged out of sight and out of mind -- they ask if I'm suicidal, I tell them no, they tell me 'okay, here's a prescription for six Xanax and a packet of resources, go home and fix it yourself'. I'm just like, you sons of bitches, do you think I don't know how to Google things? If I could fix this on my own, I wouldn't be talking to you. Except I can't right now, because plague.

Everyone wants to fob me off on someone else. I was referred to an SSDI attorney by a friend, because frankly that's where I'm at right now. I wrote to them, specifically mentioning his name and the associate who helped him, and explained that I was basically a vegetable and I needed help applying for disability. I'm a college-educated suburban white girl, who grew up hearing her parents make rude jokes about welfare queens -- I have no idea how any of this works and I'm so broken I kept losing my place in a blanket whose pattern was literally "knit-purl-knit-purl to end of row; turn work over; repeat". Their response was "Sounds like you need some help applying for SSDI/SSI disability. Here's the website for the Boston Bar Association, good luck!" Crisis lines of both the psychiatric and financial varieties keep directing me to one of two national clearinghouse sites for social support services, both of which direct me to each other, because neither has any programs in my area.

I am trying really, really hard not to resent the ever-loving fuck out of anyone who has any sort of support system right now. One housemate has almost the exact same list of medical problems that I do, and is also completely out of work right now. She is married to the one who has a grown-up salaried WFH IT job, and will never have to worry about having a roof over her head or food in the cabinets. The single housemate has supportive family literally a five minute walk down the street; if she ever gets her feet kicked out from under her, she can stay with them temporarily while she scrambles back up. Another friend yote out to California right before lockdown to stay with his family. A local offered to help me with paperwork, then ghosted me intermittently before explaining that he was having a hard time himself right now and barely had the capacity for his own life. I have an elderly rat, no more savings, and no options.

I don't even know how I'm going to move the little I own. How do you even ask people to do that in the middle of a pandemic? If I don't have the money to move, I definitely don't have the money for a moving company, and I'm envisioning all of my community-minded friends pursing their lips in judgement and declining because like all the good people they are diligently social distancing.

I have also discovered, while hauling an empty suitcase out to Watertown and a full one back home again, that I do not cope well with face masks. It's fine if I'm not doing much, especially if I'm in a climate-controlled space like a store or the T, but as soon as I exert myself at all, I see spots. And no, it is not a matter of "just get used to it"; I have tested this by trying to wear a mask during my home workouts. It is just stuffy enough under there, and there is just enough reduction in air flow, that the world keeps going all film-grainy and dark on the sides, which I know from experience is the first step on a very short path to the Magical Land of Syncope. I had to stop during the outdoor trek and sit on the suitcase about twice a block through the commercial district, where it stayed on because there were people. This was when it was 72 whole degrees out (and the AC is generally on 74°F inside) which doesn't bode well for moving my heavy shit around in late August. 

I'm normally good at catching things at the weird-vision stage, although enough random strangers and T employees have asked me if I'm okay that I have to assume I look as ill as I feel at that point. And I have an absolutely tragic talent for talking people out of calling emergency services when I do actually keel over, but everyone is so health-panicked that I don't think it would work right now. I know what's happened and why, but I can't exactly communicate that to bystanders when I'm unconscious. As nice as EMS is, I don't feel like waking up to a round of Twenty Questions ("How many fingers am I holding up? Who's the President? Do you have a seizure disorder?"). So I just don't go out.

Alison over at Ask A Manager got a question about this the other day that suggests this is considered legitimate can't-(always-)wear-a-mask territory, and I am able to wear a mask where required in MA, which is indoors/during interactions with other people when it's actually useful, so I don't have any qualms on the scientific or legal front. I have just never been a good judge of how much potential peril/damage it's "reasonable" to put up with, and I don't have the capacity to explain myself over and over again a million times a day. 

I'm fucking tired. I'm tired of covid, I'm tired of living in a big glitzy continent-spanning banana republic, I'm tired of anxiety, I'm tired of other people carping at me to do things I can't in order to fix their anxiety for them, I'm tired of not having the space to dance, I'm tired of asking for help before things fall apart and being told 'well, come back when it is an emergency', and most of all I'm tired of this cycle where I tell myself "I'm going to stop being lazy! I'm going to put on my big-girl pants and wake up early and work 40 hours a week and support myself like an adult!" and then fail at it again because I just do not have the capacity to do that. I do not know how to make the system understand that I need some kind of support right now. 

Sorry for yet another depressing update, but that's where I am right now.

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[goodnessmarygrace]

Part two of my POTS story...

So where I left off last time is when corona came around.

At this point, my symptoms were affecting my mental health as much as my physical. I could not focus in school. Therefore, my grades were harder to maintain and I hardly had enough energy left for the FFA contests and other organizations I was part of. I couldn’t sleep at night no matter how tired I was. When I did get a decent amount of sleep, I never felt well rested. My “everything is fine” mask was slipping hard. I cried nearly everyday. My anxiety was raging and I constantly felt terrible for not meeting all of my teacher’s and peer’s expectations. It dawned on me that my track season was done for, whether or not the pandemic took it. It was was March and I still couldn’t run my events without nearly collapsing. Everything getting cancelled was a relief because I didn’t get embarrassed from being such a mess everyday. I had so many “diagnoses” that I assumed people probably thought I was making it up. I even thought I was making it up. I brainwashed myself again. It was stressful. Everything was so uncertain that I avoided telling anyone anything about my many doctor appointments or deteriorating health.

When quarantine began, the real healing process began as well. I went to a doctor who helped me immensely. She told me to rest for 6 weeks. No exercise. This time, I was willing to do it since I was home. I had time to sleep and no longer had to juggle all of the stuff I was in. I spent time doing what I like to do, taking walks and looking at nature, being creative and using my artistic abilities, reading and getting closer to GOD again. I could finally take a deep breath. I realized that perfectionism and anxiety ruined my mind. I drew near to GOD in prayer and told Him that whatever happened next, I would trust His plan. This is the point in my life that I truly learned what trust and faith meant. I had many more doctor appointments to come. Through them all, I learned hope. I had to have hope that GOD would guide my doctors and help us to reach a diagnosis.

I was diagnosed with sinus arrhythmia and (misdiagnosed) with an incomplete RBBB and right axis diviation. I was also diagnosed with vocal cord disfunction, not asthma. When my mom noticed my shaking, (the shaking that I had been experiencing for the past year and thought was normal) we went to a neurologist. It was the neurologist who figured out the real problem though. He listened to my wild and crazy medical history story and all the happenings of the past few years. He seemed perplexed at first and deeply sad that I’d had so many issues. He had me hooked to a heart monitor (I’m a natural at those babies by now) and had me lie down. Then I sat up for a little before going to standing. I watched the screen with excitement. Was he seeing anything? All I could see was my heart rate increase. It went from the 60s to 100s in a matter of minutes. He told me I had something called Postural Orthostatic Tachycardia Syndrome, or POTS for short. I didn’t really think too much about it. He didn’t explain what it was or anything and I assumed it was some harmless thing. I had bigger fish to fry. I had an MRI ordered to check on my spinal cord to see if it was tethered. I also was referred to a cardiologist. Call me crazy, but I actually hoped my spinal cord was tethered. That would mean that some of the weakness, clumsiness, numbness, tingling, chronic constipation, leg pain, and other muscular issues in my lower half could be cured or treated with a surgery. I prayed very hard in the next week that I had a tethered cord so that some of my problems could be fixed. I didn’t think very much about my POTS. As I prayed for my cord to be the answer, I also prayed that I would be able to recover if I didn’t get the diagnosis. And when the results came in and I was indeed “just fine,” I could take the disappointment. I decided then to look into POTS and figure out what it was. That’s when I realized that it was in fact the diagnosis we had been searching for all along. What a relief it was. Most people probably would think that being relieved about being chronically ill is ridiculous, but if you’d been suffering for two years for no apparent reason, you’d take whatever diagnosis you can. I had some more appointments with the cardiologist. Electrocardiograhm showed I was fine. The stress test said otherwise. A stress test is when you walk and run while hooked to an ECG and blood pressure cuff. I didn’t make it through 4 minutes of jogging before I was too dizzy to continue. My head ached for the rest of the day and I was exhausted. The weirdest part is, my blood pressure wouldn’t read correctly. Either I had no blood pressure at all or it was at 260/60!! That’s wack! I have to go back in a few months to get retested.

Meanwhile, I’ve come to terms with my POTS. I am grateful to finally know what is happening inside of me. I feel victorious even though the battle has just begun. For the past month, I have been getting increasingly worse. I nap nearly everyday where I used to nap once every 6 months, no matter how tired I was. My heart palpitates like crazy. I can literally see it convulsing frantically in my chest. I’m out of breath walking to the bathroom. I’m even more fatigued than I was during school. Standing for long periods of time is rough, but gardening is even worse. Squatting down and getting up to plant plants, hoeing the soil, and pulling weeds in the summer heat and humidity is insanely dizzying. Everything gets more difficult everyday, no matter how much water I drink, salt it eat, and light exercise I do.

Some of my friends know I’ve been to doctors. Some know I have POTS. Most of them don’t know anything. Very few are aware of what it’s actually like to be chronically ill. They don’t know that my chances of being able to play sports when school resumes are low. So you may be wondering, how am I possibly excited for the future awaiting me and glad I’ve gone through all of this in the past year? Well, the answer is because through it all, it was an answer to the prayers I prayed in the summer of 2019. GOD began putting His plan in action before I even realized I wanted it to happen. My relationship with Him is much deeper. I have a testimony now and I know what faith, hope, and trust mean. I have the courage now to let go of the activities and responsibilities in my life that are holding me back. I plan to quit basketball (I was never very good in the first place) and pursue my GOD-given talent for art. I plan to bring about a business that will impact others. I plan to show others the gift of life that only GOD can give. I plan to share my journey on Tumblr, even if no one is here to read it. I plan to lean on GOD like never before and hopefully learn a thing or two about self-love and self-care. For the first time, I can say that I’m not actually following my plan, but the one that GOD has for me. It took years for it to come into focus, but now I’m confident that He knows what He’s doing and it’s all for the best. It’s going to be an adventure, but maybe the hardest part is already over. After two years of denial and running in circles, I am finally going somewhere. Even if it means I will be limited to my physical capabilities.

I think I’m ready.

-Mary Grace

June 8, 2020

#postural orthostatic tachycardia syndrome #potsie #POTS #self care #my story #a written testimony #christianity #positive thoughts #testimony #gods plan #chronically ill

[happyacademia]

Includes: tips, resources, and step-by-step advice!

When I say I’ve been dealing with school-induced anxiety throughout my whole academic career, I’m really being serious - my parents told me I used to ask them all the time if it was difficult to learn how to read and write, and worry if I’d ever get the hang of it like my older sister had done. Soon enough I started stressing about homework, exams and extracurricular activities, and it hasn’t changed much since, but I learned how to overcome it. 

I admit I get good grades, and the reason I work so hard it is because I worry about my future. Therefore, being concerned about your performance is a crucial part of succeeding, but once that concern turns into obsession and something that often overwhelms you, it means that it’s become something unhealthy - and that is what’s going to damage your performance. This kind of anxiety has become a big thing not only among college students but also the younger ones, who are still struggling to graduate and get into university, and unfortunately, most don’t know how to manage it. 

Anxiety and stress can lead to major health problems such as depression, fatigue and many behavioral, sleeping, respiratory and mood issues. Personally, I’ve been dealing with insomnia, mood swings, chronic migraines and some other things due to school-induced anxiety and stress, but thankfully I’ve been feeling much better once I decided to do something about it and care more for my well-being by building new healthy habits and getting rid of bad ones.

Today’s education system still has a lot to improve and we do need desperately to talk more about mental health in schools, but for now, l’d like to share some tips that have personally helped me how to stay on my feet and keep my head held up high despite the many bumps on the road.

Keep organized all year long

The one thing that will save you that one week filled with deadlines and exams is your level of organization. How do you store your notes, scored past exams and completed exercises? These are crucial during a revision session, and if they’re not in hand once it’s time for that, it can further worsen your mood. Having everything in place for when you need it will make you feel in control, which is exactly how you want to feel. Here’s a few steps to help you putting everything in their rightful place: 

Keep a thin plastic folder on your bag, and whenever you’re given a sheet, place it inside the folder at the end of the class.

Once you get home, organize all the sheets inside the folder. You can do it every other day or every weekend if it’s troublesome to do it every day. If you use a binder for the corresponding class, place it there. If you use a notebook and don’t like gluing papers onto the pages, consider buying one of those thick folders with multiple compartments - this way, you can place the sheet in the class’ compartment and find it easily once you need it.

Regularly throw away papers you don’t need anymore - having useless stuff around might cause even more stress.

Have a space in your room which is exclusive for your books, binders/notebooks and all other school material so you always know where to put things and where to find them.

I want to stress the importance of a pencil case - it might seem like silly remainder, but I know a lot of people who just don’t have them. It doesn’t need to be fancy; some of my friends use ziplock bags as pencil cases, and they work just fine. It just helps you keep your pens, pencils, highlighters and whatever else you need in one place. 

Keep up with your calendar

This is like the second part of the whole “keep organized” tip. I seriously can’t stress this enough. Dates are important; please keep track of them. The best way to do so is by having a calendar on your wall and a planner with you all day. 

Again, it doesn’t have to be anything fancy. I’ll have some free printables of calendars and planner pages below, but you can make your own monthly calendar out of a A4 sheet (which is what I usually do), and you can find some pretty cheap planners out there.

Just to make sure it’s clear, I’m talking about planners, not bullet journals. While bullet journals are great to keep up with tasks and such as well, the advantage of planners is that you can write down things that will happen in weeks by turning a few pages since the dates are already printed for you. While you can write down reminders in the bullet journal, you might forget to check later, while the planner will remind you once you get there. The calendar on the wall is also a great way to keep up with reminders. 

Like mentioned above, even though it’s not essential, keeping a bullet journal is an awesome hobby, and can be a really good friend if you’re serious about boosting your productivity and keeping up with daily tasks. I’ll leave some in-depth posts about it below as well! 

Remember to write down everything on your planner: when your homework/essay/project is due, the date of your test, any holidays, etc. It will be super helpful once you need to plan your study schedule before a exam season.

If you prefer having an app that can do that for you, I highly recommend the My Study Life app.

Resources:

emmastudies' 2019 yearly calendar printables

emmastudies' 2019 monthly calendar printables

emmastudies' weekly planner printable

studydiaryofamedstudent's printables (habit tracker, weekly planner, meal planner, month planner)

jackiejapalture's exam study kit printables (exam schedule, finals week schedule, weekly planner, essay planner, definitions sheet, notes sheet)

bullet journal tutorial by studypetals

Exercise

You don’t have to lift heavy weights or run a marathon, and you don’t have to exercise every day either. Try to exercise three days a week, the way you like the most. Exercising is an extremely efficient way of releasing stress and maintaining a body that is body healthy physically and mentally. If done in the morning or before a study session, it can even improve your concentration.

You can go on walks outside! Create a playlist with your favorite songs, put on some comfy sneakers and just go. It can actually be quite pleasant and not difficult at all.

You can enroll on a gym if you don’t like walking outside, and maybe even ask a friend or a family member to start going with you if you don’t like being on your own.

If neither of those ideas sound appealing to you, you can try doing some home exercises. There are plenty of easy workout videos for you to follow online. These include pilates, yoga, but also some pretty intense bodyweight and cardio ones. 

Yoga is one of the best physical ways to release stress. I don’t do it regularly but my sister convinced me to try it a few times and it’s amazing. There are a bunch of yoga videos online, such as morning and bedtime routines, that have really helped me start the day in a good mood or manage to help me sleep once it’s over. There are some that are even targeted to when you’re feeling very anxious or stressed.

Resources:

Yoga for anxiety and stress

Yoga for bedtime

Total body stretch

Apartment-friendly cardio workout

Eat healthy

Eating healthy doesn’t mean you have to go on a diet or try to lose weight. I know plenty of people that are quite thin or don’t really want to lose weight, but who eat really crappy food. Eating bad food can have several bad side effects other than making you gain weight, such as acne, low energy, mood swings, insomnia, and many other things. That doesn’t mean you can’t eat that cookie daily, but eating processed food for every meal definitely won’t do you good on the long run. Here are some practical tips:

Try to have lots of veggies with at least one of your meals

Try leaving junk food and soft drinks exclusively to the weekend

Eat your favorite fruits for snacks

Sometimes buying your breakfast instead of making it when you “don't have the time” it’s even more time consuming; I’ll leave some really good and ridiculously easy recipes bellow!

12 healthy smoothies

5 lazy, quick & healthy meal recipes (vegan)

5 healthy lunch ideas for school & work

Drink water

Again, so important! Keeping your body hydrated has so many advantages, especially when it comes to your mood. You need to replace the huge amounts of water you lose everyday by drinking it all back, and help maintain the balance of body fluids - they’re responsible for things such as digestion and transportation of nutrients. And so, drinking water can help you relieve fatigue, keep concentrated and think more clearly, which are essential things for a student.

It can be hard if you’re not used to it, so you can start small, with 1 liter (33 oz).

Try to slowly increase you intake to 2 liters (which is about eight 8-ounce glasses of water, and hence why people say you should drink about 8 glasses of water per day)

Measuring the quantity in glasses can be quite troublesome sometimes throughout the day, so what I like doing is bringing my water bottle everywhere. I have a 600ml bottle and my goal is to drink 3 liters daily, so I have to drink 5 bottles. 

To keep on track and remember how much I’ve already drank, I use the Drink Water app. It’s really simple to use, and you can adjust your goal accordingly! I'm not sure if it's available for Android, but you can easily find similar apps for any phone!

Communication

If you think you need it, please open up about what’s been going through your mind to someone you trust. If you don’t feel like talking to a family member of friend, look for a teacher you trust at school. You can even search for your school’s psychologist - most have it, and they’re generally the nicest people out there, and would be very happy to hear what you have to say and give really good advice. 

Finally, please consider seeking professional help. Therapy really does help; talking out loud with a professional who knows exactly what to do to help you will certainly be a good option. When my anxiety was really bad, I used to go to a psychologist weekly and she helped me made the right decisions and keep going! I don’t need her assistance anymore, but I’ll always be grateful for her help, and proud of myself for deciding to keep visiting her even when I didn’t feel like it. 

Resources:

International helplines

Take a break

Sometimes the healthiest way to put yourself back together is taking a few steps back and letting go for a while. Maybe a day. Maybe an entire weekend! Take the time to read a book, hang out with your friends, binge-watch your favorite TV show... the ideas are endless. Just don't do anything school-related.

Of course, if you're near exam season this would be hard, but if you keep organized all year long, I'm sure an opportunity will arise - to take it!

Keep going!

Never forget that you can do it! No matter how difficult it seems, you can always keep going as long as you’re not overworking yourself and seeking unhealthy coping mechanisms. By keeping organized and taking care of your health, you’ll see that your daily routine will become easier and your mind will clear up, so don’t give up!

“When you reach the end of your rope, tie a knot in it and hang on.” – Franklin D. Roosevelt

#studyblr #studyspo #study #study tips #self care #mental health #masterpost #advice #studying #college #appblr #students #inspiration #motivation #organization #original #happyacademia

[dxmedstudent]

Hi dx, I'm starting med school this fall and moving to Ireland to do so! Ive got chronic fatigue though and Im worried about being able to manage the workload. Im on meds so I'm doing pretty well, working 10 hour days rn with a 2 hour commute, but im pretty drained at the end of it. Have you or any of your followers got any suggestions for handling med school when youre just so tired all the time?

And another ask:Hi, following on from the anon asking about studying, do you have any specific tips for studying medicine with chronic fatigue? I find sitting in lectures (and the journey to and from) drains me even more than I am usually. Thanks and have a great day!            Hey, peeps! So I have someone important in my life who has gone through a chronic fatigue condition in med school. I’ve seen a lot through what they went through, but I wanted to be able to give a more useful answer. I took a little time to think, and to ask them what advice they would give.  They gave me permission to share an edited version with you.

It is possible to get through medical school with chronic health problems. Don’t let other people tell you otherwise. You may encounter people who doubt you, but never let them get to you. Remember that many people with chronic illness have achieved great things and it doesn’t have to be a barrier to  success. 

There is usually a way to get through whatever obstacle comes up. The key is to take everything literally one day at a time, and do not get overwhelmed by thinking about all the demands for the year at once. Focus on what needs to be done right now. Next week is another     week. 

Let  yourself have setbacks, and don’t give up when you have worse periods of health. There will be times when you’re more tired and stressed, but you have to give yourself space to recover back from that. Remember that everyone, whatever their health status, has bad times, and that usually they will pass. If things aren’t getting better, talk to your family, friends, personal tutor at university.  Seek help with clincians.

Keep in touch with your fatigue clinicians and be open about new obstacles and your fears about things. They can help with a lot of problem-solving aspects and support you during times of difficulty. They are also useful to rant to when you are stressed out as they know a lot about the problems of people with CFS who they’ve seen in clinical practice. 

Consider reading books on CBT and acceptance commitment therapy (ACT) - these have really helped me through psychologically difficult situations and build resilience when medical school has thrown difficult things at me. In the hardest year of medical school it really helped to have written advice to look at when various situations came up. 

Tell the university (occupational health, senior tutor, personal tutor etc.) - I cannot stress this enough. It is confidential, and they have to   accommodate you because it is a disability. This can become really important if you have issues completing sign-offs/assignments on time, getting hospital placements closer to home, getting extra time in exams etc. It can also be useful if you have problems with exams (not being well enough to do a sitting) for the university to know what is going on and how best they can help you. If they do not know what is going on, then they cannot help you. This is one of the best things I did at medical school in terms of having a safety net for when things were more difficult. 

Do not feel you have to attend 100% of everything. If you are feeling very   fatigued and not gaining much by that point in the day, it is usually     better to go home and do some quality studying at home. So many students who have no health problems will go home early, so do not feel guilty for doing so when you feel fatigued and like you’re not having a good day. Just remember to catch up what you’ve missed. 

Talk to the students in the year above about what the demands of the coming year are like, what the exams are like, what textbooks/resources to use,  and other *off the record* tips which the university would never tell you. This will help you out in planning how to approach the work for that year. It is very important to know what you’re preparing for and the best way in which to do it. 

On placement, talk to the teaching fellow/head of the placement if you have any issues completing tasks or sign-offs etc. They can help you and give you advice about how to get things done. This has been of great comfort to me during placements where sign-offs have been very tricky and I’ve worried about whether or not I will complete everything. Also ask how previous students did it - you’re not the first cohort who’s gone through the system. 

Let yourself adjust the intensity of your concentration when attending     lectures/seminars. Some days you’ll be able to be at your highest level of     functioning, and other days you may feel less functional.  Your levels might look something like:

Highest  level: concentrate/listen, participate/answer questions, write down notes.

Medium: concentrate/listen, no writing or participating.

Low: zoning out some of the time (5 mins etc), prioritising more important slides or mentally checking in again when possible. 

Use breaks during lecture days to really give yourself a breather. It is best to physically leave the space where the lecture took place, ideally go to a canteen and have a snack (food and drink are very important for boosts), or go outside (fresh air is important). Let your brain truly wonder and do  something not related to university or teaching. Don’t hang around with peers unless they talk about things which are less brain intensive or   non-university topics. 

Take on a reasonable workload during group assignments, and don’t let other students foist extra work or their work on you. Be strict about your role and that you will not do their work for them. 

E-books (textbooks) - either download pdfs and upload on google drive etc. or buy on kindle etc. This is VERY useful for reading and studying whilst out and  about for medical school, and fitting in revision during parts of the day which are empty/less busy. There are often quite a few times where you will be waiting around between teaching/clinics/hospital activities and if you use your time wisely you can really get a lot done. You can also read on public transport when commuting which is a good use of that time too.This becomes especially important close to exams where time management is key. This is one of the best things I did. 

Pacing - plan for deadlines in advance. If you have sign offs/essays/histories to do, space them out and plan everything in advance. Make a plan and stick to it, but be flexible enough to change things around if you don’t feel up to doing a particular task on that day. Make sure it is realistic personal timetable, and has time for you to attend university, study and complete assignments/sign-offs, as well as relaxation/social time.

 If you feel you are doing too much, cut back and do the bare minimum of what you need to do. Whilst it is nice to aim high and everyone at medical school is crazy competitive, the aim is to pass and go into the next year, and complete the degree. Scraping passes = still a doctor. Many people forget this, but the priority is to get by and become a competent doctor. You are doing what you can do, and you don’t need to get a Distinction in all your exams to be a good doctor. 

Do  not feel guilty for not being able to work as hard necessarily as other   students can all the time. Be proud of yourself for being there and for     doing something so difficult as medical school in the first place. Medical     school is very hard even for people who do not have any problems with     their health. There is really nothing wrong with coasting along and doing    just what needs to be done. It can be frustrating to not be able to do     more, but tell yourself that you’ve done your 100% which is all you can     give at this current time. Sometimes you’ll be able to do more, and     sometimes you’ll be able to do less. But don’t feel guilty about it. Know     that you are doing your best and that’s all that you can do. 

Similarly, everyone feels they are not doing enough/like they don’t know enough. Doctors on placements will also occasionally have a go at you, not  realising that actually for your level you do know enough. You may feel you like you’re not enough, but the truth is that everyone feels like     that. Many people at med school act like everything’s fine but underneath  the surface, we’re all working very hard and tired. 

You     are not alone - many people at med school have either physical or mental     health problems. They are all also battling through the challenges and you     are not alone in your difficulties. Remind yourself of that and know that     everyone is on their own journey/battle. 

Believe in the work-life balance Pie chart - Everyone should ideally have equal time in their day dedicated to 1/3  cognitive, 1/3 self care and 1/3 social activity. In med school, the latter two may fall back a bit even for students with no health problems, but it is very important for these things to be done consistently during med school. “If you can’t look after yourself, you won’t be able to look after other people”. The only way you can achieve your goals and look after patients etc is by looking after yourself (with the pie chart) and keeping yourself in the best health possible. 

Cognitive:studying, reading, academic extracurriculars, any activity where the mind is actively involved. 

Self care: pampering yourself, hobbies, leisure activities, exercise/yoga,     playing with pets, praying/worship etc. 

Social: going out with family or friends. Relationships. Support groups.     Societies/clubs etc. 

Join  support groups either in real life or on Facebook - it is really useful to have somewhere to rant about issues which specifically affect people with  CFS/ME, and to have their support when you have a hard day. Family and friends will not always understand everything you’re going through, even with the best of intentions, so it’s important to have peers with CFS/ME on those occasions. 

Don’t be afraid to turn down going out or doing extra things in the day if     you’re really not up to it. Better to keep yourself at a functioning level     than overdoing it because you feel you *should* be doing something. It’s    best to be honest with yourself about what you can do today. 

Learn to say no - if other people ask you to do things and you are feeling   overwhelmed at the time from work/personal life, do not feel bad about     saying no if you have reached your limit of how much you can cope. Do not  feel guilty about this, and realise that it is crucial to not take on too     much at once, in looking after your health for your ability to get through     medical school. People can and will ask you to do things either not     realising that it’s over your coping limits or not caring. You have to learn to put yourself first and forward and know your limits - it is not worth the payback which can inevitably happen when we overdo our limits.     Medical school does not give you a lot of time to rest or recover, so you     really have to make sure you keep yourself functional and within your     limits. 

Work  steadily during the year - if you have fatigue then you cannot leave   things last minute and cope with the physical and mental stress of this.     Make sure you are making notes and keeping up during the year, and     increase your revision before exams to a comfortable level. Be careful not  to overdo it in terms of number it hours a day, as most likely you will     lose your concentration and not absorb the information anyway. Best to do revision in chunks, with breaks and other things to break up the day. If the next day you get payback, it’s a sign to dial back the number of hours of revision. Even if you’re doing less hours of revision than you planned, if you’re better focused and rested you will pick up more information.     “Quality not quantity”. 

I hope this helps! Good luck with your studies, and I hope that things go well for you in the coming year.

#askdx #ask dx #chronic illness #fatigue #i-cant-promise-that