#which is a chronic symptom I haven’t had for a while

[weirdstrangeandawful]

Oh please please please don’t let me have covid…

My body genuinely cannot take another round of it. Especially not just 7 months after the first time.

[talkethtothehandeth]

“Doctor shopping.” Let’s talk about her.

If you’re disabled you’ve probably heard of this before— if you haven’t, or you’re just unfamiliar in general, or an ableist who says this shit, let’s talk about it <3 because the definition has been overtaken and pissed on by more ableist bitches than the ones who demonized addiction within the medical field and caused this term to exist.

So, “doctor shopping” is actually originated from the people who oversee healthcare, which includes any non medical professionals who are involved in the process as well, like big pharma. It’s been defined (in medical related research journals, not just on social media/ the internet), as “a patient consultation with multiple physicians in a short time frame with the explicit intent to deceive them in order to obtain controlled substances.”

However, you hear in the community, from ableist ableds or even ableist disabled people who are like fucking rabid and frothing at the mouth, gnashing their teeth while flipping over the tiniest of pebbles to find “fakers”, (which is usually an AFAB person with multiple conditions that are followed by a slew of symptoms ranging in prevalence and severity, or someone that doesn’t “seem disabled” who becomes a target). So they call it “doctor shopping” when they see chronically ill or disabled people continue to advocate for themselves by going to countless appointments to try to find out what is causing their health to decline. They (ableists) think that by changing providers or continuing to pursue a diagnosis between multiple providers constitutes doctor shopping. It isn’t our desire, and it’s absolutely exhausting and painful when you’re left with no answers.

If I had not gone to the ER multiple times within two months, I would have died. The fluids kept me alive, and the medicine helped. My mom was preparing my dad for my death, and my fiancée was petrified of losing me because my condition continued to declined. But the entire time I was there, I was terrified of asking for medicine because I didn’t want to be labeled a drug seeker, especially because I’ve been open (for my safety) about using marijuana products. I was crying from how bad it was, my blood pressure was in stage two hypertension from the stress on my body.

They said it was, “nothing to worry about” when I saw my nutrition levels were low. My doctor wants a comprehensive metabolic panel because it is something to worry about because my symptoms were severe. And I had to see another doctor, but that facility ignored me for two months while my pcp and I tried working it out with them. They fucked around with my health for two fucking months. So I had to find a different person, and when I went to her she ordered a procedure, which meant a different facility, which means, yet again a different provider. I even had to go to a different hospital at one point for more tests.

Believe me, we don’t want to go to all of these appointments or see all of these doctors because, half of the time, even though there is something wrong with us, they don’t listen. We don’t want to go back and forth and get more medical trauma just for fun or for a silly little made up diagnosis competition bullshit.

People don’t change their doctors because they want to collect diagnoses like Pokémon, people do it because they want to live comfortably, or at the very least suffer less by finding some sort of direction to move towards to better their own health. I was literally preparing to die from medical neglect, because I did my absolute best and still, to this day, don’t have answers. If I hadn’t sought out more providers, I probably wouldn’t have been able to write this post. I’d be dead already.

This desperate desire to cherry pick what someone shares on the internet about their health and literally fucking stalk people on their social media accounts while looking for any sign that someone could potentially be faking their symptoms is, unfortunately, accepted due to disabled people hating themselves, and ableds hating disabled people. It’s that simple, in my mind.

Other peoples’ bodies, disabilities or symptoms are none of your fucking business, and, yes, this includes the things we decide to share. Disabled people share what we want to, and we live in our bodies 24/7. And some of you really need to sit the fuck down and shut the fuck up about how disabled people manage their health care.

I’m not saying there aren’t people who fake conditions, but I am saying that it’s far less than what you choose to believe. You say you want to protect “actually” disabled people by weeding out fakers, when all you’re doing is harming actually disabled people by playing Sick Olympics™️ and accusing them of faking when they’re just trying to seek out life saving treatment— which includes seeing multiple providers to dig deeper for a diagnosis, no matter how rare or outlandish you think it is. You don’t get a medal for harassing disabled people, you’re just a piece of shit.

[brf-rumortrackinganon]

Do you think William's reputation will survive? I feel so sorry for him and Catherine, I had to take a break from social media, the affair rumors are everywhere, everyone is now believing he had an affair, foreign media is now talking about him fathering an illegitimate child with Rose, they are even accusing him of domestic violence and people take it all as a fact.

In the long term big picture, William will be fine. A lot of this is going to be just a paragraph or two when he’s Charles’s age and we’re celebrating a jubilee or the birth of George’s child or Louis’s wedding or Charlotte leading the Lionesses to Olympic Gold and World Cup medals.

But in the short term, yes, William’s reputation will take a hit. What he does next will determine how long it takes for his reputation to climb back up. There are three things that he can do:

Prove that everyone is wrong, that his marriage is fine and he does not have anger management issues.

Go away and not be in the news for a few weeks or months till everyone’s forgotten.

Work. Really crank out the engagements, get his numbers up to spitting distance of Edward’s, and maintain them at that baseline from here on out.

#1 requires becoming more public, and we know that’s not going to happen for the Waleses. That’s fine. History will have to judge on that one. But there is some good news on this front - the Chumleys have had enough and they’ve begun taking legal action on the rumors involving them and their children.

#2 is not happening. William can’t just peace out and not work or be seen for 3-4 months. He’s the heir, it’s his job to be seen and to work, especially when Charles can’t do much because of his own health.

Which leaves us with #3 - work. I’ve said this before and I’ll say it again. William (and Kate) both need to work more. Their numbers both need to go way up once Kate’s current health crisis is over and she’s back to top form. If they’re not going to work more, that’s fine but they need to show us more of the in-progress work that they’re currently doing and not save it all for the bow-on-top end-result. There’s a reason why the photos and videos of The Queen and Charles working through the red boxes are popular and, at times, iconic - because it shows that they’re working. If just every other week we got a photo of William in a meeting or Kate reading the reports that the Early Years Foundation says she’s been reviewing.

However, the issue with William’s work is that it can’t be a one-and-done. What ever changes they make and whatever the new number is after they’ve scaled up, that has to be the new baseline, the new standard. It must be maintained, otherwise it becomes clear that it was just a PR exercise to distract from these scandals.

Something else I’ve been thinking of a bit lately is the Waleses’ engagement numbers, particularly Kate’s and since accession in 2022. There was a lot of talk throughout 2023 of how disappointing it was that the Waleses turned in the same numbers for 2023 as they did while they were Duke and Duchess of Cambridge, at the bottom of the list. There was an idea on the blogs that everyone understood William and Kate to keep a lower profile through the spring so the attention was rightly focused on Charles and the coronation, but then they’ve should’ve scaled up from late summer onwards, after the anniversary of The Queen’s passing to demonstrate their ability to be heirs and show acceptance of their future.

But now I wonder if Kate’s numbers have been affected by her condition. They haven’t said a whole lot, but what I know of bowel/stomach issues is that they’re usually chronic and people can suffer symptoms for a long time before surgery becomes an option. So with that, perhaps Kate’s numbers didn’t change much last year because she was dealing with these issues? And to save face, the palace made the usual “for the children” excuses until it became emergent and the surgery essential. Just something to think about.

[woso-fan13]

28. Chronic Illness

“.. I’m a cancer, so obviously it didn’t work,” Alex finishes her sentence as you walk into the room. 

“Really?” You ask, perking up, “me too. We’re twins, even if it’s not the best thing to twin with.”

Alex startles slightly when your voice is first heard behind her. Turning around, she smiles and motions you into the conversation. There were no seats open so you walk over and plunk into her lap, making yourself comfortable. 

“Wait, Y/N, isn’t your birthday in February?” Rose asks. 

“Yeah?” You respond, somewhat confused. 

“How can you be a cancer then?” she questions. 

“Is that what you said?” you ask, looking up to Alex, “I thought you said that you had cancer. I need to start paying better attention when other people talk.” 

The conversation continues for another moment until the room suddenly goes quiet. It seems like everyone processed what you said at the same time. 

“Kid, why did you say we were twins earlier?” Alex asks hesitantly, unsure if she wants to know the answer. 

“Hmm? Oh, that! I misheard you, I thought that you said that you had cancer.”

“I know that, but I am a cancer. You’re not,” she tries to rationalize. 

“I’m not, I’m an aquarius,” you affirm. 

“So you’re not a cancer?” 

“I’m not a cancer,” you pause, “but I do have cancer, so I can see the confusion.”

Everyone had been trying to piece the conversation together, so they had an idea of what you were going to say. Still, hearing you say those simple words caused some players to let out exaggerated gasps. You turn your head to the sound, furrowing your brow. 

“Is this news?” 

Frantic heads nodding confirms that this is, in fact, news to them. Everyone looked like they wanted to talk, but nobody could find the words. Thankfully, you had become a master of handling awkward conversations, so you could handle this. 

“I’ve had it for a while now, I just always assumed that you guys knew. I had leukemia when I was a toddler, but I don’t remember that. But it put me at higher risk of developing cancer again, and I relapsed about 3 years ago. After about 2 years, so last year, I went into remission. I was only in remission for a few months when tests confirmed that I had relapsed again. So I’ve been doing my treatment and everything, I’ve just been timing it so that the worst of the symptoms are over when I get to camp.”

“And I know, health always comes first. And I promise, I’m taking it really seriously. I have a great oncologist and a stable treatment plan, and I’m doing everything I’m supposed to be doing. I haven’t been playing as much, Vlatko always pulls me out of practice early. And he never lets me play a full 90 anymore, but at least I'm playing. I'm doing what I love.”

—-

Everything was going according to schedule until it wasn’t. One of the games got moved up, so camp was a week earlier than it should have been. Which left you scrambling from chemo directly to the airport and still arriving late to camp. 

You had gotten a pass from Vlatko to sit out on team dinner and game analysis that night, instead finding your room and falling asleep as soon as you could. The day had been long and hard, and you knew the upcoming days would likely be rough. But you were determined not to get sick, to prove that you were strong. You really thought that you could ‘mind over matter’ your post-chemo symptoms away. 

Matter won out around 7am, when your eyes suddenly opened. The all too familiar feeling was back and left you racing for the bathroom. You barely make it in time, the bathroom door is still open and the lights off, but you made it to the toilet, so that was a win. 

You proceed to begin to lose any stomach contents that you may have. It’s not much, breakfast and a snack from the flight, but your body is insistent that it needs to get rid of it. 

You’re so busy that you don’t hear the light footsteps behind you. You’re making enough noise and so stuck in your own head that you don’t hear the faucet turn on, the tap running cool water onto some wash clothes. You don’t even notice anyone approaching you until they are squatting directly behind you. 

Your body is exhausted, ready for unconsciousness any way it can get it. An arm wraps around you from behind, across your chest, effectively preventing you from falling forward. The arm pulls you back into a warm body, Alex’s, her vanilla perfume giving her away. 

You tip your head back, half-lidded eyes looking up to her. She smiles sadly down at you, using one of the damp wash clothes to wipe your face. She wipes around your mouth, folding the fabric over before wiping the rest of your face.

When she finishes, she throws the dirty cloth into the bathtub behind her. She takes the other clean washcloth, draping across the back of your neck. The cool water feels nice, somehow helping the nausea. 

This is not a position that you ever wanted your teammates to see you in. But, here you were, cradled in Alex’s arms, one of her arms supporting your body and her free hand holding the cloth onto you. She was cooing and shushing you gently, trying to stop the involuntary whimpers that kept leaving your mouth. She wasn’t running away disgusted or ignoring you as you worried she might. She was just there 

And you knew that her solid presence would be there whenever you needed. 

[tethered-heartstrings]

genuinely not trying to dunk on molly but when ppl say will and molly were so compatible they loved dogs i just think of molly feeding them canned food from china and not even knowing it could harm the dogs, i feel like this is significant because this was what led to dolarhyde being undetected and her attack which led to her estrangement from will, even her common values w will she did not actually share at all there's a meta here

ngl this is pretty clearly dunking on molly. But let’s refute. I personally haven’t seen many metas/posts about the compatibility between will and molly, so I can’t really contest what they say. However, will and her were as compatible as will led her to believe, as much as he would let. He lied to her about his past, which made it so she couldn’t know all of him and couldn’t connect to parts she couldn’t see. Not a fault of molly’s at all

Having looked back on the script for that episode, no credible veterinarian would ever say “was it canned food from china”. It’s unprofessional and xenophobic. Also, a vet in an emergency situation isn’t going to use scare tactics. They just need to know what went in so they can take care of it. Yes, molly was feeding the dogs canned food because will was out of town so he couldn’t make them food. and I can guarantee will is rational enough to say “hey, these brands are okay” and molly isn’t stupid. And they are very well off, so they would need to buy “cheap dog food from china”. If we want to talk about the dialogue in that scene, we have to admit to ourselves fuller is a misogynist who can’t write women, so ofc he made her say “is it bad to be made in china”. It also neglects how SOME but not ALL food has shown problems, but dog food made in the US has also had toxicity issues! And (I can’t remember if this was in show or just in script) the vet says “pet food safety isn't regulated the same way as human food” which is just false. There is high regulation in pet food, and pet food is made to be human grade and safe for human consumption (and has been for decades). Dogs are more likely to be poisoned by xylitol or chocolate from your candy or get pancreatitis from your table scraps than die from “dog food from china”.

But let’s humor for a second it was the cheap dog food molly bought. The concern and toxic component is melamine, which is added to food to fraudulently increase the protein content. it’s nontoxic (ish) by itself and only becomes a problem when combined with cyanuric acid that forms a crystal and leads to renal toxicosis and failure. Some gi biomes have bacteria that can convert melamine to cyanuric acid, but not all, making it more toxic for these patients. It also wasn’t solely a dog food thing, it happened in human children, too. All that aside, most melamine toxicosis cases are chronic, aka molly would have had to feed the dogs for a while, building up these crystals, and slowly killing the kidneys. This wouldn’t happen suddenly to all the dogs at once. Early signs of toxicosis are very detectable symptoms (vomiting, polyuria, polydipsia, lethargy) and these are signs molly would have noticed and done something about. ALSO if it was melamine the veterinarian was worried about, she wouldn’t use activated charcoal as her treatment (as she states in script, again, don’t remember if this was said in the show). Activated charcoal only works for something currently in the stomach, and that isn’t the pathophysiology for melamine. To treat melamine toxicity, you need iv fluids and supportive care. So what we can take from the veterinarian interaction is 1) fuller doesn’t know how medical professional talk to clients and 2) he doesn’t even understand the toxin he mentioned so it feels xenophobic as fuck to even bring that up.

And no, her canon (fuck you fuller) ignorance to the danger of canned dog food isn’t the cause of dolarhyde being undetected and attacking her. Even if she was feeding them dog food with melamine, Will literally figures out and says that dolarhyde poisons the dogs in the family to get rid of the “alarm system”, so he can attack and not have the family alerted. It didn’t matter what dog food molly fed them, dolarhyde intentionally poisoned them. Even if she fed them food will handmade, dolarhyde would have still poisoned them. And she was a good owner who brought all 7 (probably) puking dogs to the vet as soon as she could. molly had nothing to do with dolarhyde attacking her. dolarhyde had something to do with dolarhyde attacking her (and hannibal ofc). At least give her some credit for, you know, surviving

And no, her getting attacked was not the cause of will estranging himself from her. He never really loved her and used her as a fill in for a man he outright rejected. He was having an emotional affair with Hannibal and not giving a shit about molly. That was nothing molly could control.

And we really can’t thoroughly discuss her values because we barely see her onscreen. Her screentime is a plot motivator, we aren’t privy to who she is as a person. She loves her son, lost her first husband, and loves will. That’s kind of it. Oh, yeah, she also takes her son fishing without Fisherman Husband because he chose to estrange himself.

[greenokapi]

So… what do y’all do when you wanna do a bajillion things but you can’t settle on which thing to do so you just kind of end up doing nothing?

… lissen I’m still only recently diagnosed with adhd so I still don’t know how to work with it… I wanna draw so many things, wanna make merch, comics, I wanna write a fuckton of silly cringe fanfics… I wanna make videos? Like maybe youtube videos rambling abt stuff while drawing but then I don’t know if anyone would even be interested in that, and besides I haven’t done video editing in…. Probably close to 20years? What program should I use? Anyone got any tips on that?

I also wanna make stuff, lil bead things like these guys I made a while ago for example

I also wanna try doll customization cause it’s kinda only been the last decade or so where I’ve allowed myself to like dolls… reasons for that being … uh… gender stuff… it’s like only now in my life, around 30 have I finally gotten somewhat close to getting a grasp on my gender and sexuality, and I never even really realized before that this was something I had a problem with? Which probably makes no sense tbh…

I also wanna do sculpting and even paint, after art school teachers made me feel like I should never paint again bcs idk man I wasn’t up to their standards 🤷

And… I wanna do all this stuff but not only does brain say ‘adhd my guy’ but there’s also my increasing health issues that… I mean I’ve always had them but I guess getting older makes it harder and harder to constantly deal with them… and that’s another thing I never really realized was so bad until back when I was in Japan in 2015-2016 as an exchange student and would have to go to the hospital increasingly often bcs of pain nobody could diagnose… aand then I was shamed for it bcs having to go to the hospital in the middle of the night sometimes was a huge hassle to the dorm staff, idk I was a problem…

Since then I’ve had two operations and will probably need to have more in the future. Also, amusingly, when I finally got diagnosed I was looking at the list of symptoms, all of which I could relate to in at least some way, but the ones that stood out, for some reason, were ‘constant exhaustion’ and then below it was ‘insomnia’ and… maybe I’m not actually lazy when I’m tired all the time? But y’know, I don’t really wanna use a chronic condition as an excuse to just do nothing, plenty of ppl have chronic problems but still do stuff with their life… but when I think like that I also remember this isn’t a ‘pain competition’ or something like that and different people just have different capabilities to deal with chronic pain and such… idk, I honestly think I’m still trying to come to terms with the realization that being exhausted and in pain all the time probably counts as some kind of disability….. but I don’t feel like I’m allowed to say I’m disabled bcs I do also have good days, you know? I should probably try harder to just DO things?

Ahem, it’s like 9AM and I haven’t been able to sleep and stuff hurts… I just wanna go do something productive but instead I’m whining on here which I probably shouldn’t do bcs this is the internet and strangers can see what you post and maybe use it against you but also sometimes you just really wanna rant into the void… or maybe more like semi-void cause idk, maybe someone reads this and can relate or give advice or just talk or something? Buuut you suck at talking… then later you feel embarrassed about your tired rambles and probably end up deleting them and just bring them up in therapy later like you should…

Anyway, until this embarrassment pops up I’m probably gonna try to find some painkillers and go draw or something -3-

[cleo-fox]

The “When Are You Updating?” Ask

I should say up front that this isn’t in response to anything I received. This topic came up in a Discord server that I’m in and another friend of mine got a similar ask shortly after.

I’ve alluded to the fact that this Tumblr isn’t my first account and that I’ve written for other fandoms previously. What I haven’t talked about is why I’m taking an extended hiatus from that fandom or why the majority of my work in this one has been one shots.

Historically, I’ve been a long fic writer. On my other pen name, I posted a long fic that had a fairly decent following in that particular corner of fandom. I’m a slow writer under normal circumstances but when the pandemic hit, I started having more trouble writing and my updates slowed a lot. I worked in a public facing role and the stress I was experiencing was unlike anything I’d ever dealt with before. About a year into the pandemic, I got pregnant.

To sum it up: I was pregnant, which put me at a higher risk for developing complications from Covid. I was working in a public facing role, which increased my risk of catching Covid and had the added factor of people being aggressive about not complying with mask mandates. Because of my pregnancy, I was not able to take critical medications, which then negatively affected my focus and energy levels. I was dealing with other chronic illnesses that were exacerbated or changed by pregnancy, as well as the physical symptoms of pregnancy itself. Then there was also the delivery, which had complications, as well as adjusting to life with a newborn and then going back to work.

I was upfront about all of this. I said that my fics weren’t abandoned, but that I didn’t know when the next update would be because I was dealing with a lot.

I still got asks asking why hadn’t I updated yet.

I knew that these asks came from a good, well-intentioned place. I loved that people were so excited about my writing that they wanted to read more. I loved that they cared so deeply about my characters. I didn’t want to sound ungrateful for their enthusiasm or their support, nor did I want to initiate a pile on with a snarky reply or make someone feel bad for asking a genuine question. I often struggled with how to word my replies, to find a way to be grateful for their enthusiasm while also reiterating that I had a lot on my plate and that I would write more someday, but that I didn’t know when someday was.

It didn’t seem to matter, though. No matter how many times I said the same thing, the asks still kept coming. The worst ones were the ones that scolded me for taking so long because the sender didn’t know how long they would be in this fandom or the ones that included the phrase “I know you had a baby but…” Those hurt. Those made me feel like people saw me as a content creation machine and not like a person.

Eventually, this started to negatively impact my desire to interact with that community, as well as my desire to write that story. When you log in and you know that there’s a good chance your inbox is going to have one of those notes, it’s hard to feel enthusiastic about logging in at all.

So I decided that I needed to take a break. I still check that pen name every so often and I still intend to finish those other fics, but I need some time. This pen name was created out of a desire to give myself the space to write on my own terms, and I’m grateful for all the people here who have let me do that.

And honestly? If you want a writer to update, it is far, far more effective to talk about what you love about their fic. There are so many times when I’ve been pulled out of a writing slump by a comment or reblog where someone talked about what they enjoyed about my fic. That kind of engagement is more motivating than a request for an update could ever be.

There’s that one post going around with the compilation of crazy AO3 author’s notes—the ones that are like “sorry this chapter is a day late, I spent the night in federal prison lmao.” It’s a great post and I love that there are people like that. I admire people who can create art despite their circumstances. But for every writer like that, there’s someone like me who’s going through some shit and doesn’t have the time or energy to write the same way that she does when things are going okay. I wish people would remember that.

TLDR: be kind.

[tellthemeerkatsitsfine]

I used to somewhat frequently get really bad chronic physical anxiety symptoms, like I’d mentally feel not that bad but I’d still feel dizzy and lightheaded and feel like throwing up and a bit numb everywhere and my chest would hurt, and then of course I’d worry that this means I’m dying so then I would start to feel anxious, and that would make it worse. I even went to the emergency room a couple of times when these feelings were accompanied by particularly severe chest pains. They hooked me up to machines and did all kinds of tests and eventually said it’s just that I’ve got so much anxiety happening so chronically that it’s causing physical symptoms to also happen chronically. That or there was some physical cause that they missed with all their EKG tests and breathing tests and blood tests and other things, which would be quite a coincidence, if I had my several different anxiety disorder diagnoses and also a different thing that caused all the same symptoms. I don't know. They did find my blood pressure runs low and tell me to eat more salt, and someone said something about a thyroid being a possibility but never followed it up. Maybe I should follow that up.

But these were weird and extra scary because they weren’t just happening during a panic attack, or while I was freaking out about something and I could make them go away by calming down. They’d come on with seemingly no warning and they wouldn’t go away and I hated it so much. There have been a few years in my life where this has happened regularly, most days, and I’ve generally had to make some major life change to get it to stop.

Outside of those few years, this has been something that happens occasionally, and it freaks me out, but I try to remind myself that I’ve had it before and it’ll pass, and it usually does within a few days. As of now I actually hadn’t had it for quite a while – not in that way where the physical symptoms just come on with no obvious warning or antecedent, that is. And yet it’s been happening all day today. I feel fucking terrible and I’m writing this post because of course I hope it’s just that again, but I can’t really know.

It’s really frustrating, because I’ve just gone three weeks without drinking for the first time in many years. And I’m pleased about that. But I’m always hearing and reading people saying that when they stopped drinking they felt so much better and healthier physically and psychologically, and I’ve had the opposite pretty much from the start, and it doesn’t mean I’m going to abandon my plan to cut back but it does seem unfair. To my justice-obsessed brain, if I have to live without doing that thing I really enjoy, which is drinking whiskey and watching old comedy videos every weekend, I’m supposed to feel better in exchange, not have my anxiety levels ramp up to the point where I’m dizzy and almost throwing up and a bunch of other physical symptoms that I could get from alcohol too, but at least if I got them from drinking then I’d have fun in he process. Last night I woke up in the middle of the night convinced the world was going to spin off its axis and I was dizzy and I couldn’t get back to sleep for two hours. That’s what’s supposed to happen during a drunk/hungover sleep, as a price I pay for having fun drinking. It’s not supposed to happen when I haven’t had a drink in three weeks.

I don't really know why any of this is happening because things are actually going relatively well right now, maybe it's low blood pressure. I'd just like to say, I feel cheated. I know that not drinking is still a good idea and it's what people should do and everything and it's what I'm doing, but I was promised that this would feel better in at least one way and I feel cheated because I'm still waking up in the middle of the night panicking and I'm still dizzy and lightheaded. It would sure be great if these symptoms would slow down before I have to go to work on Monday. This is exactly the sort of thing that I'm afraid of when I worry that I'm not functional enough to keep a fulltime in-person job longterm, that this sort of thing will happen when I'm working. Hasn't really happened since I started working in person last year, but it is now, so that's good. I'm living in a friend's house at, as the British say, mate's rates, but I still do have some rent to pay.

[legendoftortor]

personal vent on family/health/body image discussions below

I’ve been dealing with some really debilitating stomach pain and issues with eating over the last few weeks; I’ve dealt with this on and off since I had covid in February but it doesn’t seem to be going away this time. As someone with like six different chronic illnesses, I hate when new symptoms crop up out of nowhere because it’s always so hard to pin down what exactly is causing it.

I literally can’t drink or eat anything without being in immense pain and dealing with other debilitating symptoms, so I’ve been avoiding eating/drinking anything aside from a few sips of water to take medication during my work days just so I can function as normally as possible and eating just enough at the weekends to try and make up for it. It’s not ideal and it’s meant that I’m flaring other conditions of mine and I haven’t been able to go in office for work at all, but I can’t seem to get my coeliac specialist to call me back to try and pin down whether it’s something I need more tests for and my GP is shrugging me off, so I don’t feel like I have much of a choice at the moment. I think it may be gastroparesis (as it’s a comorbidity of two of my other conditions, but I’m just not sure because I’m not a doctor and I have so much else going on health wise)

I spoke to my mom for the first time in weeks last night, and was venting about how frustrating it is to not be able to eat normally and how it’s causing me all sorts of other issues, and all she had to say back was that ‘I could stand to lose a bit of weight’.

Like…what. the. fuck. I’m literally having to pretty much starve myself over here and am struggling and all you are willing to do is bring up my weight, which is something I’m already incredibly self-conscious about and feel like I have so little control over? I was just starting to come around after struggling with my mental health for weeks, and she’s gone and fucked it. She is so uncaring and unsympathetic to anything I’ve gone through in the last few years, and I will literally never be good enough for her, no matter what I do. She treats me like it’s all my fault or like I’m faking it, and it doesn’t matter how much concrete evidence I show her, or how many times my husband confirms what I say - she still acts like I’m a liar.

Apologies if I’m quiet on here for a while, I don’t want to be that person who’s always posting negative things so I may just lurk in the background for a bit until I feel a bit better.

[crippleprophet]

(feel free to not respond to this, hell feel free to be like “please don’t do this again”)

so i’ve had join problems for like 3 1/2 years now and they just got diagnosed like 2 week’s ago, turns out i have runners knee

so i feel bad because 1. it feels lit not as big of a deal as i feel like it is (it is a big deal, it’s impacted my life (thank you therapy))

2. i’m worried that pt and more exercise won’t make it better (i’m on my schools swim team, so 4 practices a week during the season, plus a swim meet on friday)

and 3. i feel like (at least for now) i need more support. my pt doesn’t start until february and i can’t remember the last day i haven’t been in pain or had sensations that are probably due to nerve wackiness. i have used a cane in the past and it has helped me immensely. but i feel bad for wanting something that works for both legs. i’ve literally have had 2 dreams about me having forearm crutches.

i’m just really exhausted, sorry for dumping this all on you rn, i feel like even though i was listened to i still was just told to exercise and loose weight

hey, it’s absolutely no problem & i’m so deeply sorry you’re dealing with this 💕💕

i’m gonna throw like a billion disclaimers on this that, in addition to my usual line about just being Some Guy on the internet, i am definitely responding from a place of trauma here - i don’t know your body & you are the authority on your experiences, i’m just tossing some stuff out there based on my experiences, which might be totally different in other (or underlying physical processes yadda yadda) ways. also like big tw for medical neglect

so. i ran cross country in high school and my joint pain originated in my left knee at age 16, no specific injury or incident, RICE etc barely did anything. xrays and mri showed nothing. tried cortisone shot, euflexxa injections, some sort of topical steroid that was originally used on racehorses, nothing. because i was a runner no one ever considered it could be anything but an orthopedic issue.

i had two exploratory arthroscopic surgeries (which i’ve since learned are as effective as a placebo) with extensive debridement - first dx, plica syndrome, “we have no idea why this was this bad,” cleared to run again after post-op PT, pain came back even worse after ~7 months.

second dx, grade II chondromalacia patellae aka runner’s knee. told never to run again. i knew in post-op PT that something was wrong, this wasn’t the same pain as recovery previously, it felt like the underlying issue was still there. this wasn’t pain of healing, it was making something else worse. my physical therapist didn’t believe me, just kept pushing me, literally told me once that there was no way i was in that much pain. the pattern of swelling, location & sensation of pain, nerve symptoms, etc never made sense to anyone, no matter how many people they called over to poke & prod.

i don’t think i’ll ever know why, especially when he then didn’t fucking do anything with this information, but one day he had me try a lumbar extension stretch. you know the scene in the little mermaid where she’s propping her upper body up with her arms on the rock, waves crashing behind her, triumphant music? it’s basically that pose. it was both the single most excruciating and relieving thing i’ve ever done; even my chronic migraine of 2 years lessened. but we proceeded on a normative linear recovery arc, i got cleared from PT, the pain was better but still there.

flash forward four more years of intensifying pain - first my other knee, then the bottoms of my feet, then more constant and prominent in my lower back, then my upper back & worsening of the neck pain i’d been told and believed was from looking down at books/phone, what i now know as neuropathy increasing all the while - using a cane, then forearm crutches, then a forearm rollator, then a mobility scooter, spending more & more time unable to leave the bed - and i stumbled across an article about ankylosing spondylitis that matched my history fucking eerily, right down to the car crash as a younger teenager. it turns out AS commonly first presents with knee pain, not back pain, in juveniles.

so here’s what i’m gonna tell you: even if it’s “only” chondromalacia, your pain is real and serious and you should listen to your body. and, with again the mega disclaimer that you might be experiencing something totally different, i gently suggest:

read my posts about AS. read my google doc about AS. read anybody’s posts and articles about anything that originates with knee pain, especially if it involves neuropathy.

keep tabs on your body and don’t believe anyone who tells you something is normal until you’ve investigated it for yourself. does your neck hurt? how much? how often? what about your upper spine, between your shoulders? your lower back?

try a lumbar extension stretch, just in case.

if you haven’t been to a rheumatologist before and it’s at all possible for you to do so, do it. if you have a GP and can get a blood workup from them instead, do that. more info on blood testing here - but keep in mind that negative blood work doesn’t rule anything out.

if you can get forearm crutches, one hundred thousand percent do it. make sure they’re sized properly - more info on that here.

do whatever you possibly can to shore up your trust in yourself and your experiences. surround yourself with as many people as possible, in person or online, who believe your pain and make you feel solid in your knowledge of yourself. i’m a big fan of putting up signs with reminders if you can. whether you have chondromalacia, something else, or a combination, your pain is real, it is disabling, and it is in your best interest to develop strategies to cope with the systemic gaslighting that is existing within an ableist society & medical system.

if there is literally anything at all i can do to encourage you, answer questions, etc, please feel free to dm me or send another ask any time. my whole fucking heart goes out to you - you are not the only one who’s been through this, and that is both the horror & deepest relief of chronic pain. so much love to you, may you receive everything you need.

[of-canes-and-manes]

005: Coming Back From Covid

It took nearly three years of the pandemic and two near misses, but I finally caught covid in mid October. I still haven’t figured out how exactly it happened, as I only leave the house for doctor appointments and rehearsals with a local community band. But happened it did, and I’ve been out for the last month while trying to recover.

To be completely honest, I didn’t even notice I had covid at first. I had helped my mom move hay bales from the trailer into the hay loft on a Saturday morning, and paid no mind to the soreness in my body for the two days after that, nor to the difficulty I was having getting around. After all, that had been the first time I had helped with hay in some five odd years, as well as the most physical activity I had attempted since becoming physically disabled. It was entirely within the realm of normal symptoms for me to be physically exhausted, and I even considered helping with hay a success because I wasn’t anywhere near the amount of fatigue I used to experience from significantly less intense activities.

But the following Tuesday, I woke up at three in the morning drenched in sweat. I had spent the whole night tossing and turning, which isn’t unusual on its own, but never before had I woken up to soaked pajamas and bedsheets. As I stripped my bed and changed my sheets, it finally occurred to me that my symptoms were not just my usual post-exertional malaise from helping with hay; as it turns out, night sweats are a symptom of covid, and I tested positive that evening.

And so, that was the first day of what became three weeks of quarantining.

Truthfully, I enjoyed my quarantine, especially that first week before I began feeling symptoms above and beyond my usual chronic fatigue. Despite my best efforts, I had been rapidly approaching burnout territory via trying to do too much, even after I had already pared down my life to better suit my disabilities in August. I was just still stuffing too many activities into every day, vying for a sense of satisfaction I hadn’t felt in weeks, and rather than feeling fulfilled, all I got was misery.

So when I ended up hyperfixating on a new fandom right at the beginning of my quarantine, I finally allowed myself to stop and rest. I spent every waking moment of those first nine days reading fanfiction, and I made it through a million words by the time I started feeling sick. Even once I began feeling symptoms, I continued reading, and I ended up having not only the time of my life, but the break I so desperately needed.

The feeling sick came about a week after I tested positive, and once it did, it really hit me. I woke up sore all over, well above and beyond my usual morning aches and pains, and though I had been congested for a week by that point, finally my nose began to run. As I started going through a box of tissues every other day, my breathing got worse, until I felt like I had been swimming underwater. I stopped being able to brush the horses, and then I wasn’t able to keep up with basic self care, never mind all the housework I try to do.

A week and a half after I first tested positive, I had to go to the ER. It was a Thursday, I was still testing positive, and I felt worse and worse with each passing day. I had tried to get a hold of my primary care doctor, but never heard back. Luckily, the ER sent me home a few hours later with a steroid to help my lungs, but I still received instructions to return if I continued to worsen.

The steroid worked. After a week of that, I finally started feeling better, though the congestion stayed the same despite my best efforts. I was able to schedule a telehealth appointment with my primary care doctor a week after my ER visit, and was sent an antibiotic in the event that I had managed to contract a sinus infection. With the antibiotic in my system, the congestion began to improve, then returned to normal. I was finally, blessedly feeling almost entirely normal again.

It’s now been over a month since I first tested positive; I’m once again negative and no longer actively sick. My breathing is normal and all things considered, I’m back to my pre-covid health. But I’m feeling a fatigue that isn’t anything like the usual chronic fatigue I’ve experienced since 2016, and this fatigue has slowed me down something fierce. I still haven’t been able to get back to brushing the horses regularly, I haven’t ridden in weeks, and I have yet to figure out how I’ll prepare my garden for winter.

I’m hoping that with enough time and rest, I’ll regain the stamina I had pre-covid. In the meantime, I’ve been exploring hobbies and interests that I hadn’t before had the opportunity to, and discovering more of myself along the way. I thought that if my capacity for activity was reduced any more than it had been before covid, I’d lose everything I ever held dear. It is with great pleasure that I can say that that didn’t happen, and I’ve even found that I have no desire to return to the hectic life I had prior to catching covid.

That said, I’m very much so looking forward to the day I can get back on Tim and resume riding! It will come, hopefully sooner rather than later, but whenever it does, I will be ready for it.

May your day be filled with peace and joy

[myhairfeelsnice]

hiii i saw ur post about getting over food poisoning and i just wanted to tell you that i went through a similar experience to what you described and it lasted for months. it was a really isolating and demoralizing experience and it made it hard to do my job and i'm so sorry you're going through that. i hope this advice doesn't sound trite but what the biggest things that helped me was taking a good quality probiotic (i used seed but it's super expensive so once i got better i switched to a cheaper brand) and doing yoga. i also in general tried to pay attention to my bodily sensations (which was hard since i felt so disoriented all the time). i tried to pay attention to what foods made me feel sick, what activities tired me out the most, even the time i woke up and how that affected me. i didn't fully get better until like 6 months later but that's also bc of other health stuff, but after 2 months i did start to feel a lot more 'normal.' i'm not sure if you've already tried these things, and if you have then i'm sorry i can't give more helpful advice. what you're going through is very difficult and it's hard to feel like you're not in control of your body. i hope you start to feel better soon <3

Thank you sweetheart ! It is very comforting to receive this. I’ve had chronic stomach problems for around 5 years now so I assume that that combined with a months worth of antibiotics simply reduced my microbiome and immune system to zilch, leaving me super vulnerable to food poisoning. I’ve taken probiotics for a while now and do yoga every day. I think the most I can do is to manage symptoms but I am still bothering my doctors about this all ! I haven’t much hope but at least my boyfriend does, he’s convinced that I will recover so I’ll just ride along on his hope

[talkethtothehandeth]

Here’s a reminder that if you have chronic illness(es) and your teeth aren’t “perfect” because of your symptoms— if they’re stained or cracked or have cavities you can’t quite treat yet, if they’re chipped, eroded or crooked, if your mouth doesn’t get healthy no matter what you do because you can’t control getting sick, if your disabilities get in the way of taking care of your own teeth, if your teeth have fractured from clenching too hard because your body is always under severe stress, or if your medications hurt your mouth, you are not gross and you absolutely deserve compassion rather than judgement.

I have to go to the dentist very soon because my body doesn’t know I’m in pain until it’s too late, and it’s not good. I have (incompletely) cracked two teeth because my body is constantly stressed so I bite down on my teeth like I’m gnawing on a billionaire’s ankles; I have some form of decay on my back molars because of how often I’ve thrown up. This is uncontrollable, no matter how much I take care of my mouth.

People say tooth aches are their worst pain ever, and that’s because they haven’t experienced nerve pain before. I have, and do, experience it often. But never in my mouth. I haven’t had a cavity since I was 12, I’m 23 and these are not from a lack of dental care. My enamel weakened from all the acid in my mouth, and antacids cause enamel erosion, gum recession and of course cavities as a result. Celiac disease affects the mouth too, along with my multiple medications that I can’t stop taking. My mouth is completely crowded on my bottom jaw because of my EDS, my wisdom teeth grew in sideways, even. I've managed my teeth for a very long time on my own, but now I need extra help and that's okay.

Teeth are a big deal, I know. They’re a huge source of insecurity, and it’s more than reasonable to be upset if their health changes. I get it— I had my good cry (okay multiple cries) about it, but I would rather have a healthy mouth than all of my teeth if it comes to an extraction. It isn’t your fault. The state of your teeth is not indicative of your morality and self worth. Even if you get the lecture from the hygienist, even if they judge you (which they should never do, but unfortunately they do) even if you are ashamed of your teeth and your smile you deserve compassion and care and you deserve to be treated kindly when seeking out dental care.

Bring something to make you comfortable. I’m bringing a squishmallow for my back and my JBL noise canceling headphones. I’m gonna be playing movie soundtracks while they’re digging in my mouth and I’m going to get the care I need and deserve. If you can, I encourage you to go see a dentist. Oral health is tied to your heart and to your brain. A mouth infection can be fatal if left untreated.

I had no idea that I had a cavity at all, and now I have to see if it’s salvageable or not! I feel shame, even though I did what I could, because I’ve been judged in the past even after disclosing my medical condition. It made me not want to go back, but I have to now and I have accepted that. It’s scary, I will be very nervous in the chair especially because my body responds differently to pain medication than others.

But I can do this, and so can you. You are not wrong, your smile is not gross, you are not dirty. So many people, so many young people have teeth problems too because of their illnesses. Whether you have all your teeth, only some, or none at all, your smile is so so beautiful and doesn’t need to be hidden. It’s a very hard topic to talk about, but I feel like if it’s talked about more maybe people will have less shame.

[sugarcult]

Sorry to tack this on because I know this can be additionally triggering for a lot of people (let me know if I can tag this post in a more beneficial way), but as a pregnant person who has been struggling with ED for longer than I haven’t - I have found my medical team to be basically useless in terms of nutrition and having open conversation surrounding my health.

I am due to give birth next week. My fetus weighs over 7 pounds right now, and I have gained less weight than that amount, so mathematically, I have been losing weight over the course of my pregnancy. I am overweight but would not consider myself to be near a doctor’s classification of “morbidly obese,” and yet my nurses and doctors have openly referred to my weight measurements as “great” or “perfect,” despite multiple doctors having told me pre-pregnancy that weight loss during pregnancy is NEVER advisable and is usually indicative of a health issue. I have been deliberately open with my medical team that I have a history of ED, despite the risk of this being used against me if my child is born underweight and the fact that I could be held criminally liable if anything happens to him in utero. (I live in a pro-life state. Roe v. Wade was repealed and our trigger laws went into effect at almost exactly the time period I became pregnant. They are very heavy-handed with their legal pursuit of mothers in this state.)

My doctors repeatedly brushed me off for the first 6 months of my pregnancy and told me I would begin to gain weight and my baby would be fine. At 6 months, I still had not gained ANY weight, and I was concerned about it because I knew I was not eating enough and was not eating healthily. Not only did I have a pregnancy-long case of “morning sickness” and severe nausea, but other pregnancy symptoms like heightened sense of smell and the inability to take most medications made me lose my appetite constantly. Even if I physically felt like I was starving, I spent the first six months of pregnancy either refusing to eat because the very thought of it made me feel like I would throw up, or vomiting immediately as a result of forcing myself to eat. I would go days on end without eating, then finally feel good enough to eat and binge as much healthy food as I could because I wasn’t sure when I would get another chance. My doctors told me not to worry because “the baby is getting all your nutrients first,” meaning while I feel so sick I can barely function, my fetus is literally siphoning my vitamins, etc. off the top of whatever I eat and using them to grow. Which is great! I want him to grow. I wanted this pregnancy, and I love my kid already, and I want him to be healthy.

But no doctor ever recommended taking additional vitamins. They did not prescribe anti-nausea medication to help me eat. I was finally prescribed an anti-nausea med after being hospitalized with COVID at 8 months pregnant, but never over the first 8 months of literally starving myself because I could not stomach the idea or act of eating. They knew about my history of ED. Nobody ever asked me to describe my experiences or recommended I see a nutritionist (which I would have had to have a referral to see because of my health insurance). Nobody ever recommended I see a therapist to discuss these issues - thankfully for me, I already have one. For the last 14 weeks of pregnancy, I have seen a high-risk obstetrician 2x per week every week and brought up these concerns over and over again, and my health team has always insisted that the baby is fine, so I am fine.

I finally started having an appetite again and being able to stomach regular meals about 6 weeks ago, after 30-31 weeks of pregnancy. I was advised I could resume taking a medication for a chronic health issue at 34 weeks. I began taking the medication, and it began making me so overwhelmingly nauseous every morning if I didn’t consume roughly half a day’s worth of food as soon as I woke up (and even sometimes then) that I immediately had to discontinue the medication. This nausea would not go away for the entire day, no matter how much food I ate, if it did not occur immediately after waking up. This was very triggering for me and my eating disorder. My doctor will not prescribe me an anti-nausea med, so I am once again unmedicated for a health issue I have had for years and which is exacerbated by my pregnancy. My medical team says I’m fine because my fetus is clearly not underweight.

As a matter of fact, one of the few healthy (read: not crackers and plain toast) things I could stomach during this pregnancy was fruit. I ate a lot of it because I couldn’t eat enough vegetables or proteins reliably and at least this was SOMETHING I could eat. Eating too much fruit during my pregnancy has triggered the return of a liver condition I had previously and also the onset of a new medical condition, for which the only cure is “limit or stop consumption of carbs”. Fruit is carbs. My doctor said, “Stop eating so much fruit and bread and you’ll be fine.” We have the eating disorder discussion again. He said, “I’m not asking you to count carbs. You’re smart enough to be able to change your eating habits on your own. For every bite of carbs you have, you need two bites of protein. This does not mean overconsume protein to justify more carbs.” I had a lunch date planned with my husband after that appointment, and I went to the restaurant and cried while reading the menu because of the guilt I felt at the idea of ordering anything on the menu. I barely ate at all that day, and the fear of engaging in “unhealthy” eating habits prevented me from eating regularly for over a week. I decided that I would just have to deal with my liver condition for the sake of my mental health and not relapsing into ED, and I chose to try to eat as consciously as possible without being too hard on myself or whatever, and the liver condition and new health problem have persisted. My doctor told me my secondary health problem would most likely resolve itself after delivery, and it was mostly just uncomfortable for me, so I assumed I would just deal with it rather than engage in disordered eating behaviors and fall back on old mindsets. What my doctor didn’t tell me was that, if I didn’t restrict my carbs, my secondary health problem could actually lead to health issues for my fetus and had a 1000% increase in the odds of a stillbirth if not fully treated.

All of this is completely circumventing all the other medical problems my fetus and I have had this pregnancy, like prolonged hospitalization, persistent attendance of physical therapy, constant readjustment of medication, the general horrors of being treated like a commodity instead of a person, etc. I am supposed to deliver my child a week from tomorrow, and I love him, and I am excited. But if I had known that advocating for myself as a survivor of ED would be so fruitless and that my medical team would care so little about my personal nutritional health and mental health, just as long as my fetus was generally fine, I wouldn’t have chosen to have a child yet. I would have waited another five years to work on my ED coping skills, or tried to determine if adoption, etc. was a better option for us. Or I would have chosen to be child-free and focus on MY health instead.

If my medical professionals and society had been honest with me about what pregnancy was really like and how little the world cares what happens to the people who actually birth children, I wouldn’t have gotten pregnant.

the thing is like. i get that it's scary and makes people who do desire to get pregnant uncomfortable when we talk about the brutality and violence of pregnancy and the damage that pregnancy can do to your body

but you deserve to give informed consent to that process.

the lies around pregnancy - that it's inherently safe, that it doesn't do you permanent damage, that it's only extremely rare for people to die of pregnancy complications, etc like

all of these are lies constructed so that more people will get pregnant w/o knowing all that

there needs to be more talk about the impact of miscarriages and how common they are, how different abortion processes are and how accessible they are

but also like. talking about how pregnancy fucks your body up should not be taboo

this is a process that permanently changes most people's bodies, and that's even if the pregnancy doesn't do them like. severe illness or injury

and i just think everybody should have a right to KNOW that

bc to live in a society that intentionally obscures and hides facts about a completely optional and dangerous process does so for a reason, and that reason is based in a very sinister ideology that does not value bodily autonomy or informed consent

[jodilin65]

I would have gotten my entry posted earlier if I wasn’t fighting the usual battle of fatigue. Again, better than anxiety, but anything that affects your daily activities or peace of mind is never good.

Tom was sent home from the plasma place after they said his arms were too bruised. He feels like that’s their fault for pressuring him to put heat on his arms when he’s noticed that this actually makes it take longer for the bruises to fade. He’s going to look and see how far another plasma company is.

Yesterday was painting day at the clubhouse and we painted manatees. Mine came out okay. Could have been better, but it wasn’t that bad.

I have a funny story about painting class but first, I’m so glad I had decent energy yesterday! I walked down in the warm sunshine and back and still felt good. The day before was horrible. I was just so tired to the point that it was really getting me down. I still think the main culprit is my thyroid, so I hope going back on multivitamins will eventually make a difference. There’s vitamin D in them and while it’s not as much as a typical adult dose there’s a bit of concern that it may go the opposite way and make my thyroid work a little too hard and make me anxious but I can skip the vitamins on some days if I have to.

It’s just frustrating because like I said, while I think my thyroid is the main culprit, I don’t know for sure. If not, then I don’t know if it’s something in the way I sleep or if I really do have chronic fatigue and this is just the way it’s gonna be for half of the time or more.

Tom says he doesn’t think I’ll have it for the rest of my life because my problems change.

Yeah, after nearly a decade, maybe.

I had burning down there yesterday that made me begin to doubt the soap. So because I have $25 of store credit every 3 months, I ordered a yeast infection kit. Could take a week to get to me, and I don’t know if I’ll have to fight with the applicators, but at least it’s free. For now, I took some leftover Monistat cream, put the biggest glob I could fit on my fingertip, and shoved it up there last night before bed (excuse my explicit description here, lol). I haven’t had any burning so far today, which now leads me to think that it was a yeast infection. I started to highly suspect this at the end of my day yesterday just by the symptoms and the fact that it had been several days since I used that harsh soap.

I don’t know why (to replace primary care visits?) but my insurance company will pay me $100 for someone to do a home check where they come to the house. They take your blood pressure and go over your meds, make sure you’re safe, etc. So I said sure, why not? So we’re gonna schedule that sometime soon. We have eye exams scheduled for the 4th.

Tom walked with me down to the clubhouse because he wanted to get more steps. I’ll admit that I’m glad he didn’t come in with me because it’s nice to have some things we do on our own like how he does the plasma thing on his own. We just don’t need to do every single thing together.

The redneck was actually kind of funny yesterday. He was coming up the street on his golf cart with Happy and as soon as he saw me he goes, “Oh no!” and puts a hand over Happy’s mouth, lol.

A surprising number of people turned out to paint and a few didn’t even show up. I ended up sitting next to a woman named Sandy and she was pretty nice. She was quiet and soft-spoken.

Behind me sat Debi, a rude Trump whore I never liked. She was rude to me in the group a couple of years ago as people who disagree with you often are instead of politely making their own point and leaving it at that. You know, the my-way-is-correct-and-your-way-is-all-wrong kind of thing.

Before class got going, Debi stood up to lower the speed of the fan between our two tables because it was causing a disco ball effect with flashing shadows as the blades swung under the recessed lighting. She looked at me and smiled and said I had it too. It was noticeable on our canvases but Sandy and I didn’t mind. I just wanted some air flow because it was hot in there.

So then Gail, who was leading the class had us all introduce ourselves. This was something I didn’t want to do because I was there to paint and not socialize. Also, because of my unique name, I knew Debi would know who I was. With a temper like mine, if she pissed me off bad enough, there’s no saying what I might have done.

So now the few people in the group who might not like me because I don’t always agree with them knew who I was but no one gave me any shit.

When Debi walked by me later on, she didn’t even glance my way. I had to fight the urge to stick my foot out in front of me just because I hate the little bitch. At the end of the class, when we were having our pictures taken with our paintings and I was talking to someone else, I thought I saw her looking my way with a contemptuous look on her face, not that it matters, of course. It was actually kind of funny.

The only thing I didn’t like about the class was that it wasn’t quite as structured as I thought it would be with Gail guiding us step by step but at least she was there to answer questions. It was nice to get out for the two or so hours I was out of the house.

And to leave my paper journal in the bathroom, lol. I always thought it would be interesting to see if it was mentioned in the group, but there’s been no mention of that or any pictures posted from the class yet.

[mental-health-advice]

hi so my partner was recently diagnosed w bpd & im at a loss for how to help them. they’re constantly afraid of me leaving them, that i hate them, & that any second we don’t see each other irl is the end of the world. one of their biggest issues lately has been dealing w a change in plans. we recently had to move our plans to 2 days from now bc of scheduling conflicts & no matter how much i reassured them that we would still see each other within the same week, they were inconsolable. they admitted they want to lash out at me but are trying not to, & that in extreme cases they considered killing themselves to “punish” me for changing plans. they have openly acknowledged that this is toxic behavior & they acknowledge that it triggers my ptsd, but it continues to happen. they had an episode like this when i had to move plans to a later time in the same day & were still equally inconsolable. we came up w a compromise where they could still see me today but im worried abt whats gonna happen when we CANT compromise and scheduling just doesn’t allow it. ive tried being empathetic abt the way they perceive stress/abandonment & tried validating their feelings while reminding them that it does affect me negatively, and no amount of reassuring that we’ll see each other eventually will console them. ive also tried encouraging them to get more help than they’re currently getting in therapy but nothing seems to have changed. they’re chronically stressed from all this & i just want them to be stress free & not feel frightened abt being abandoned. i can see how much this affects them, but at the same time i have ptsd, anxiety, & depression & all of these are triggered by my partner’s behavior. i want the both of us to be better, but i want to see them finally be relaxed and not constantly attacked by their own demons. i love them so much & it hurts to see them in pain all the time.

Hey there,

This is a tough situation to be placed in for anyone, despite whether they are struggling with their own mental health issues or not.

It sounds like you are doing all that you can right now in reassuring your friend and trying to the best of your ability to do all you can do to make compromises and try to catch up on the same days but at a different time if at all possible.

You mentioned that your friend is currently in therapy but I am wondering I guess if they are in the right kind of therapy to help treat the symptoms and thoughts surrounding BPD. For example, if they are in general talk therapy (which is also great) but DBT (dialectical behavioural therapy) which is comprised of 4 different modules that are done in a group setting and one on one weekly therapy sessions is the best kind of therapy for BPD. It can be scary and especially the group settings but it does get easier and if your friend isn’t one to be OK in a group setting then some psychologists are OK with doing DBT one on one for the entire course. So definitely something to think about if they haven’t tried DBT yet.

Sometimes, depending on the severity of symptoms and possible other diagnosis’ medication can also be helpful. So maybe encourage them to see their local doctor or GP and ask for a referral to see a psychiatrist for some more help and support.

I also want to point out that if by chance your friend was to commit suicide, attempt to or want to hurt themselves in anyway, this does not reflect on you in any way. You friend is in control of their own actions and usually if they want to do something bad enough then no amount of talking them out of it can stop them. If you were to see some warning signs though so for example these could be but are not limited to:

Increase in talking about suicide

Putting in place plans

Isolation from people including you

Loss of interest in things

Then I would encourage you to seek some help and support for your friend on their behalf. So for example contacting their local mental health team so they can do a follow up and/ or intervene if needed. Or getting them to the local hospital.

I really hope that this has helped a bit and please do let us know if we can help to support you in any other way!

I’m thinking of you and hope that you are going well!

Take care,

Lauren