#she's the best and if she says i have fibro

[aristocratic-otter]

Hey y’all! I’m here, despite a shitty flare up of my fibro this week. I appreciate all of your art and writing so much, you have no idea! Thank you to : @emeryhall,  @monbons, @thewholelemon, @cutestkilla, @bookish-bogwitch, @best--dress, @blackberrysummerblog,@rimeswithpurple, @Iamamythologicalcreature, @artsyunderstudy, @theearlgreymage

Here’s one from each of my official WIPs

From Saving Simon Snow: 

 “What did he add?”

She thinks for a bit longer, but then shakes her head. “I don’t remember. We’ll have to ask him.”

“Ask me what?” comes a voice from above our heads. Baz is there, looking sleep tousled and heavy eyed. A knot of longing forms in my stomach and I suddenly want to drag him back into our (our!) bedroom and tumble him back into bed. I restrain myself, because I don’t really understand where Baz and I stand right now, and because Penny’s sitting right next to me. 

From the Heart in the Well

“Simon,” I breathe, “[Redacted] is one of the fae! Fairy kind disappeared centuries ago!”

Now Simon’s smile drops away. “Yeah, well tell him that. At least I know why we’re here now, though. It’s so stupid—you’d think it’d be safe to eat a loaf of bread someone left out on their porch.” 

Now I’m shocked and annoyed. “You mean you ate a fucking fairy offering, Snow? What in Morgana’s name is  wrong with you?

From Snow Fox: enter Premal

“Word has it,” Gareth drawls, as he strolls into camp, “a passel o’ Tory boys is lookin’ to sign up with the Snow Fox. Turning their coats, as it were.”

Penny lifts a skeptical brow from where she is sitting in the corner of my tent. She’s been poring over what we’ve gathered on British movements for the last several hours, and her eye has developed a bit of a twitch. “Says who?” she asks.

“Says Premal Bunce,” Gareth says. “Ran into him at the tavern.” 

From TikTok Dancer: 

.I frown for a moment about the freckles. How does he get enough sun on his arse for freckles? He’s got no visible tan lines…

I shake my head at my woolgathering. He’s probably a devotee of tanning salons, that’s all. Though it’s odd, I think, as I trace an outline of the constellation Leo by connecting some of his many markings. 

From Stars, Flowers, and Children,

He’s not looking at me now that he’s said his piece. His jaw is locked, and his arms are crossed over his strong chest, which is heaving from exertion. He’s staring out over the horizon with a fixed look on his face. Probably pretending I don’t exist. 

And I don’t. I don’t exist to him now. And it’s my own damned fault. 

From Cupid’s Shield:

It’s 12:30 pm on February 14th, and the day has been so unseasonably warm that most of the school has taken their luncheon out to the Great Lawn to picnic in small groups. Penny and I are no exception.

I spent my entire morning in a pleasant glow of happiness, thanks to my mysterious Valentine sender. 

I think, whoever she is, she’s grown more skilled each year, because this morning’s card looked worthy of being displayed in a museum. I couldn’t do more than gape at it, for a long moment. I think I also wanted to delay touching it, because the feelings trapped inside have become more potent as each year has gone by. And it’s started to really bother me that someone in the World of Mages loves me so much and I’ve got no notion of who she is. It feels unfair, unbalanced or something. 

From my COBB project:

Penelope Bunce and Christie McCoy take the second room on the left without comment. That means, since Rhys and I are sharing the first room on the right, that Simon Snow and Baz Pitch are left to share my old room, the second on the right. 

I don’t know if the two men expected to have rooms to themselves, but there’s definitely some odd subtext to their interaction when I offer them the final room with a silly flourish. They don’t laugh at me. They don’t even look at me. Instead, they’re eyeing each other intensely. Snow looks uncertain for the first time, and Pitch looks…if I didn’t know better, I’d say he looks scared. 

What’s there to be scared about in a bedroom?

Baz

And now we’re roommates again. Lovely. 

I’m also itching to start another WIP because I had a super angsty (meaning fun!) idea. But I must be good…if I finish Heart in the Well, I’ll let myself start it. The only teaser I’ll give now is it starts with an (apparent) major character death 😉 . 

Tags and cheers to: @chen-chen-chen-again-chen, @bazzybelle, @dragoneggos, @erzbethluna, @palimpsessed, @frjsti, @fatalfangirl, @letraspal, @martsonmars, @melodysmash, @moments-au-crayon22, @moodandmist, @mostlymaudlin, @onepintobean, @raenestee, @tea-brigade, @upuntil6am, @whogaveyoupermission, @messofthejess, @carryonsimoncarryonbaz, @krisrix, @shemakesmeforget, @larkral, @confused-bi-queer, @j-nipper-95, @facewithoutheart, @nightimedreamersghost,  @thewholelemon, @youarenevertooold, @nausikaaa, @ileadacharmedlife, @angelsfalling16, @noblecorgi, @alexalexinii,@you-remind-me-of-the-babe,@hushed-chorus, @whatevertheweather, @prettygoododds, @thehoneyedhufflepuff, @ivelovedhimthroughworse, @mooncello, @wellbelesbian, @ic3-que3n, @shrekgogurt, @cosmicalart, 

[theskee]

i had an alarmingly unpleasant doctor's visit yesterday. and i need to rant about it. but first... a little backstory here:

so a couple years ago my PCP retired. she was amazing and I loved her and I wished her all the best. she was the best PCP i'd ever had and the first one to ever listen to me, take my chronic pain seriously. in our first appointments together she asked a lot of general questions and i flippantly said "well i have a lot of joint pain but i used to be an athlete and my old GP told me it was probably just wear and tear" and she looked at me, a 28 year old, and said "No that's weird you shouldn't have that much pain in all those joints at your age. i want to run some tests." lo and behold, i have an autoimmune disease that causes inflammation that's been running rampant for years. something that was ignored by all my prior doctors as me needing to lose weight or maybe it's fibro, here's some anti-depressants, but no one ever ran tests. because i was young, fat, and "female".

this doctor changed my life. the damage of prior doctors was already done. I have crooked pinkies, no cushion left between the joints in my fingers, i have lost bone mass in my wrists from the inflammation, but now, i have it under control. my RA diagnosis changed my life. and it broke my heart to see this doctor who actually listened to me and care about me retire.

and so came the horrible task of trying to find a new PCP. my neurologist recommended me to someone. now. my neurologist is great. she's a very no-nonsense woman with terrible bedside manner but god is she good at her job and she cares. it's so clear that she cares so i don't mind that she's not the most congenial of doctors. because if i say "so i have this thing going on" she immediately jumps on it and tries to find out why. she's insanely efficient, too. i trust her.

so when she said "This doctor is extremely talented and knowledgeable. You might try and see her." i went for it.

and... i had a not that great first experience with her. i went to, we'll call her Dr. V, for my first appointment and annual physical where my bloodwork was excellent, i'm in great health overall despite my chronic illness. but i am overweight. and despite my cholesterol and blood sugar and all that good stuff being excellent, she probed me about my diet and my weight and my exercise habits and I was like??? "Honestly I put on this weight pretty rapidly and I'm not really sure why as I do eat a balanced diet, I tend to be a light eater in general, I'm relatively active. I didn't change anything major but I shot up a little over 20 pounds in the past three months."

To which she looked at me like i was lying to her. like. full on side-eye. but we didn't linger on the topic. she didn't have *anything* to say about this, and launched into trying to get me to let her give me a pap smear that I was not emotionally prepared for because I've never had a PCP try and offer gyno services and also, if anything ever so much as briefly touches my cervix and I'm in pain. It's always been a problem. And she was visibly irritated that I told her 'No'. So all of this was a bit wild to me because i have an autoimmune disease already like. should the unexplained weight gain not cause a little bit of concern? (I wound up talking to my Rheumatologist about this, who is like the mother I never had and took it extremely seriously and helped me out since Dr. V sort of no-sold me on this.)

Should the sensitivity of my cervix not make you raise an eyebrow??? But. It wasn't all bad. This was our first appointment and sometimes doctors come across weird or just have bad bedside manner. So the good-- Now, full disclosure, I had a cancer scare last year. A sort of delayed one, as we found the mass in my chest that could possibly be cancerous in 2018 while I was pregnant and unable to do much about it. I put it off because it scared me until last year and Dr. V, I brought this up to her, and she was *excellent* about this. She was very calm and able to help me get everything handled, scheduled all my tests and gave me feedback within hours of all my testing so as to not leave me wondering and sitting in my anxiety. So I was like... Okay. Maybe I just... Misread that weird thing about my weight. I'll give her another chance. So yesterday I had my annual physical with her. A lot has changed in the past year. I had an hysterectomy on October 22nd, where everything except my ovaries was removed. No tubes, no uterus, no more painful cervix. I started a new migraine medication (one I've mentioned on here before) that has been great but gives me weird appetite side effects (as in a don't have one and when I eat I get full basically immediately.) These are the major things that have changed. Now, mind you, I'm walking into this appointment after getting misgendered by the nurse even though my gender and pronouns are in my fucking chart and I don't get misgendered at my specialist's offices-- So I'm already annoyed. Dr. V sits down and looks at my chart and makes what I can only describe as a Stink Face and asks me, incredulously: "Did you just have a hysterectomy?" To which I said, in a very forced, chipper tone: "Yes!" And her response is not to ask after my health, but to very sharply, with so much judgment, ask me: "Why?"

Insert Red Flag Emoji Here. I was very taken aback by this and then explained to her all my various reasons which are all valid but honestly my answer could have been "because I fucking felt like it" like what the fuck do you mean *why*? It's my fucking body, doc. We go through the motions of some of the exam and she asks me how my migraine meds are working out and I say to her: "They're great. Life-changing. I have maybe one or two migraines a month at most now. The only real drawback is it gives me this side effect that makes it really really hard to eat and make sure I get proper nutrition and calories in so I can function. I'm never really hungry and when I do eat I get full immediately. So it's been hard." AND HER RESPONSE.... "Well don't you want to lose weight?" I cannot believe I had to look this woman, a medical professional, in the eye and say: "Sure but not by starving myself." Which she fucking ignored and went on to tell me how I'd needed to lose weight and I shouldn't be concerned because I'm losing it at a steady rate, if I've lost a little under 20lbs since I started these meds in July. The fact that I have had to *fight* the side effects to *MAKE SURE I DON'T RAPIDLY LOSE WEIGHT WHICH IS NOT GOOD FOR YOUR BODY* did not seem to register to her even though I straight up told her this. I have never felt more disrespected. I cannot even begin to explain to you how mad this whole experience made me. I got in my car after the appointment and screamed. The fact that she's treated me this way knowing: - I was a high risk pregnancy on medications that i have to take for the rest of my life that you absolutely should not get pregnant on (also i should mention she seemed offended I want to see an actual Gynecologist and not her for my gyno needs... Girl. Fuck your ego and your paycheck.) - That I have struggled with eating disorders in the past and had previously asked her to be gentle about that subject (I'm not a total pushover) - That I am a chronic pain sufferer who has to work twice as hard to maintain what would be considered a "normal" level of activity - That I'm a former athlete that does actually know how to take care of my fucking body I used to see a goddamn dietician I was a fucking *boxer* with a *license*. We discussed this extensively in our first appointment. - That my bloodwork shows I'm in great health. (A fact which seems to fucking annoy her btw.) - That I do not struggle with any kind of symptoms that could even be remotely related to my weight such as pain or breathing issues or heart health issues. All I felt, was a woman judging me for being small fat and doing what I want with my own fucking body. So anyway, I'm never seeing this cunt ever again and I will be giving that feedback to my neurologist because she gives a fuck.

[mcalhenwrites]

I'm having a rough time, and editing Seasons has been one of my only solaces lately. I've been wanting to work on other stories, but my heart just hasn't been in it. I don't think those side stories for Geckos are getting published in August, either. I don't even have them finished. I might work on them a bit this weekend during the lull. We'll see if I have energy?

About to get TMI and personal, though I don't want to get into some of it. I just know I want to make myself small and unseen and not a problem/burden, bc I sure as hell feel like one. I relate pretty hard to Shannon's character for a reason. :') (Right down to the suicide thoughts and attempts.) Anyway. My health plunged recently. My fibro has been in a real bad flare the past... Week and a half, I think? It has been excruciating at times. I call it my hugs of pain bc it really loves my upper back/right arm (all the way down from neck/shoulder to my fingertips). And I have no idea if I'm menstruating right now (I think I might be) bc I've been bleeding nearly every fucking day since I got an IUD inserted in late June. I've had these almost contraction-like pains but more focused on the right side of my abdomen. That's where I have a cyst that's nearly 3" in size, confirmed by an ultrasound the same day the IUD was put in. I get them frequently, but idk if it's the size of this one or the IUD or a mixture of both, but I'm having a rough time of things. I've called about it and thought the pain had eased up, but it keeps coming back. And yes, I do know what contractions feel like, so don't dare come at me for saying I'm describing something I've never been through. Financially, I just... I am struggling like hell and I'm so sick of it. I'm worn out from all this pain I'm in, but I'm still trying to do things like write (which is falling flat on its butt outside of Seasons), work my weekend job, keep things clean, run errands, and think of merchandise ideas for the tables I sell at. It's all complicated. Oh, I have been playing Wylde Flowers as a distraction too, though that kind of went weird when we had a tornado warning and I had to shut it off??? It was very unexpected, and luckily it didn't hit my area - well the derecho did, but the tornado was huge just very short-lived. Thank goodness. It was down and up again, I think. I thought I might deal with them less in Iowa but now I'm missing Kansas! Speaking of... the worst thing about this entire fucking financial situation is that I can't afford a house so I can get my dog back. My mom sends me frequent photos of him (and her dog too but I don't miss her that much tbh). He's such a good boy and I miss his sweet hugs and stinkiness. :( Yes, I miss him being stinky. Leave me alone. My dog is the best, and now that I work in a place where I see dogs and get to pet a few of them every day, I miss him even more. But he wouldn't adjust to apartment life. He's a pyrenees mix who weighs over 112 lbs right now, and he hates being photographed but will actually let my mom take them now if she says they're for me. ;A; Sweet boy! BEST BOY. God I miss him and he's turning ten in October and I'm afraid he's gonna get old and pass away before I get him back.

[polyamorouspunk]

Hey friend, im really glad to see you doing better. Ill admit ive been a bit worried about you as of late, just been too sick and tired to formulate any meaningful things to say. Im also getting better now, so i can say it now. You mean alot to me, since youre a friend and a big part of why I ended up joining my local punk scene and finding these people i feel at home with. I think the world would be a much bleaker and darker place without you in it, and i know id miss your presence, as im sure quite a few others would too. Ily /p, and i am biting you affectionately forever. Hope things can keep going well for you, world knows you deserve a break. Feel free to reach out if you need someone to talk to

<3

Thank you.

I’m not going to say that getting together with ⚡️ magically fixed everything in my life, there’s still a lot going on outside of that and details that need to be worked out and everything but the main weight of having this sort of back and forth hanging over my head after having a string of people act like they wanted to get with me or at least show interest in me only to then say that’s not what their intentions is gone for the most part now.

There’s been a lot of drama in my scene that I’ve been wrapped up in as well, nothing out of the ordinary or unusual for a punk scene, but I am starting to get a bit drained from the amount of shows and events. Better to be burnt out from social interaction with friends than from work or relationship drama.

I’m not feeling the best today, but it’s nowhere near the levels I have been feeling. I’m glad we were both able to find a home in a scene like the ones that we have, and I’m forever grateful that I found a dumbass of my own within the scene and she’s the fucking head of it all and her dumbass chose me of all people.

I can promise that things are better, I’m not in crisis mode anymore, and there’s a good chance I’m not going to slide back into crisis mode for a good while. I hate to say that my mental health has really been hinging on my relationship with ⚡️ because that’s really unfair of me to say but it has been. Being able to be with her in a much more solidified way has literally fixed like 90% of what has been wrong.

I’m feeling rather tired and sick myself today. I made an appointment with the doctor treating my fibro for today because last week I had a day where around 3pm my entire body started getting really sore out of nowhere, and then one morning I woke up with my legs already hurting and then the night before my birthday I nearly doubled the dosage of my pain meds and it was still hardly enough to get me to sleep, and today I woke up really sore and I’m still very tender and sore, but all he did was tell me to take calcium and magnesium so I’m just adding another pill to my nightly concoction. If it helps it helps I guess I just. You know. I don’t want to be u grateful because all things considered if one more pill helps that’s a very small price to pay vs upending my entire life or whatever.

This ask is at least a week old I think from when I announced that ⚡️ and I were back/more together, so I hope that you’ve been feeling better during that time and into now. Always good to hear from you.

[glittertomb]

Very personal but important question(s?) regarding chronic health issues and disability

So I’ve had fibromyalgia and Gastroparesis for about a decade now, and I try my best to self-manage these issues (in addition to the expensive meds they give me that don’t really provide relief), but it becomes severely difficult for me to work a full schedule, particularly when my job drains me physically, mentally, and emotionally. I spend my days off in complete recovery mode, absolutely bed-ridden, afraid to do anything social or physical, because I risk going into a total Fibro meltdown. Which is a nightmare, but I’ll spare you the details.

I’ve been considering applying for partial disability because I think working 3 or 4 days instead of 5 or 6 would be much better for most humans, honestly, but particular for someone like me who deals with chronic nausea, discomfort, and pain on the daily. I’ve been putting it off for ages though because I know that disability can be very difficult to get and a horrible process and I can’t work myself up to it or afford a disability lawyer to help me. I tried being a little more aggressive this past summer and collected “documentation” on my fibromyalgia in the hope of preparing to submit it, and literally all of my documentation says “fibromyalgia?” because apparently none of my doctors believe me after years of testing and thousands of dollars of office visits trying to get this diagnosis. To be honest, using fibromyalgia as my reasoning for disability needs was a dead end anyway because lots of doctors still don’t believe it exists, so I doubt the government would find that a good reason either. And I really doubt they would take the Gastroparesis seriously either, even though both of these conditions are dehabilitating at times.

So one of my friends recommended I go through the avenue of my mental health issues. At different points of my life I’ve been diagnosed with depression, anxiety, bipolar, ocd, adhd, etc, and who knows what the real answer is, but she’s a mess. I’ve been realizing over the past couple years that I’m very likely autistic, and that would actually explain a lot of these things, but the past 6 months have been crazy, and even though I’ve been working a bunch, I’m poorer than ever because of the rising cost of everything, so I cannot afford to get a formal diagnosis yet. But I know that I told my most recent psychiatrist all these horror stories about my anxiety, so I decided to get done documentation for her too, and guess what? Generalized depression and mild anxiety. Girl, huh? (Tw: blood and dermatillomania coming up) I showed her evidence of scars on my hands from picking my hands every night til I bleed everywhere, I described how I get overwhelmed and cry at work several times a week and often fight back panic attacks at work and in my private life, I told her than I struggled to fall asleep and stay asleep and only got collectively about a few hours every night, I told her that I literally could not socialize without using alcohol as a crutch but I can no longer do that because of my digestive issues so I self-isolate, I told her that I struggle to maintain eye contact and panic when people give me eye contact… so many stories like these. Mild anxiety smdh

So that comes to my first question cause I guess I decided while writing this that I have a couple:

1) How do you, as a female-presenting person, get a diagnosis for severe anxiety? How wild do my stories have to be without accidentally committing myself?! I have an ex, amab, who basically pulled a john Mulaney and was like, “I get nervous on planes sometimes” and he legit got a prescription for Xanax or one of those other big ones, and another who is on a dose of gabapentin 5x the strength of mine because he gets social anxiety sometimes, so this is especially frustrating that I can’t even get a dang proper diagnosis on anything after ten+ years of therapy, doctors, tests, everything.

2) What is the process like for getting an autism diagnosis and are there cheaper routes you can go that would still be credible? I’ve exhausted my expenses from years of jobs not paying my worth combined with money poured down the drain trying to get any sort of help with my kaleidoscope of issues, and at this point I’m too broke and demotivated and burnt out to figure out a way forward.

3. Has anyone been able to get partial or full disability who would be willing to hold my hand through the steps and keep me motivated? I know it’s a huge ask but I honestly get so anxious even thinking about the process that I completely shut down. At the very least, maybe you could explain what worked for you or how you would approach it better next time? I just moved far away from my support group so I’m feeling alone and even a word of caution or encouragement would help.

I know I’m not really as connected to this community as I used to be, but I’m hoping someone will get to the end of this and even a kind word or a smidge of sympathy/empathy would be nice. And please do reach out if you have fibro because I don’t meet many and it would be nice to have friends who can relate. Thank you for listening! 💜💜💜

[thessalian]

Thess vs A Return to Normalcy

Updates from the workplace, and the news is ... for once, not terrible.

See, turns out that Scruffman came in on Sunday, along with the other part-timer (who has been petitioning for more hours and I think she's going to get them at this rate), and really registered the massive dent I made in the backlog. Because seriously, that whole week we went from just under 300 to just under 150 and that was about 95% me. So we're finally back down to the low-mid double digits in terms of the size of the typing queue, and I have a feeling Scruffman had a general sense of, "Ooh. [Thess] did a lot. [Thess] should not have been doing that much, I know that."

Scruffman does not have the best communication skills, mind - especially not over email. He sent an email going, "Give me a bell ASAP" and actually included his number, which I have had stored on my phone for literally years, so I thought there was going to be something urgent and horrible. Because, you may recall, he was going to touch base with me today about potentially having to drag my poor fibro-riddled carcass over to fucking Hampstead owing to lack of bums in seats. I was concerned that this was going to be a call where Issues were brought up.

However, no, this was his way of saying, "I has a concern and want to make sure you're okay after the hours you put in last week". I didn't pull punches, either. He asked how I was doing, which is how he starts all telephone conversations, really, and I just told him, "I seriously overdid it last week". I could hear the gears turning as he was going, "Oh. Yeah. Oh, right" before moving on to the whole thing about the various unexpected absences.

So ... turns out that Violet, Goblin, and Temp are all out at the moment, though Goblin and Temp are apparently coming back on Friday. He's got Other Part-Timer coming in tomorrow, so it's really only Thursday where there might be a requirement for me to come in. But apparently that's only if Scruffman himself takes ill or something else goes entirely to hell. It was pretty clear that he was trying desperately hard not to make me go into the office, particularly after the couple of weeks I've already put in. He also recognised that I do more typing when I'm at home than I do at the office, and then surprised me further by going, "I don't necessarily mean overtime or anything!" like he very much doesn't want me to have to do any more of that either.

So the overall gist is, "Things are back to normal, we will try to manage things without forcing you on to public transport, thank you for all the help and we promise we're not going to make you do too much more of that!" I'm not sure what happens with my overtime - whether it's Time Off In Lieu or actual money, but I think I'll find that out when Head Honcho comes back from his own holidays ... or rather, when I come back from mine because he's away until next week and I'm off next week.

I very much need to be off next week. I haven't fully recovered yet. But at the very least my house is full of nice foods to have that don't require too much in the way of cookery. I did up a pork roast last night so I have leftovers from that. There's a roast chicken that's good in the fridge until Friday, which gives me time to do things with the leftover pork roast and with the duck legs and pork chops I got on sale with this month's grocery shop. But tonight, since I am exhausted (whoever was typing with me today also left me with the longer bullshit - thankfully there were no ten-minute atrocities but if I see one more placenta report this week I'm going to lose my damn mind), it will be leftover roast pork with mashed potato and an asparagus/tenderstem broccoli medley, with an appetiser of gluten-free mozzarella sticks (which, yes, still have the lactose issue but I have Lactaid so I can still have my breaded hot cheese) and possibly a salad. I did actually eat today! Okay, not lunch, but two pieces of gingerbread as breakfast went really well with my morning coffee.

[stardustedknuckles]

Well that's the second rheum to say "that's hella fibro" so I guess at this point I accept that I do in fact have fibromyalgia. There aren't many conditions that deal with muscle weakness/random pulling/contracting without joint issues and mostly I don't have joint issues. I balked a bit when she started in on how the best treatment is exercise (do you HEAR yourself) but then she said we'd try gabapentin so. I mean if that gives me any energy back then I'll be happy to put it towards exercise, but we aren't starting there.

I'm still not sure why neither rheum will take ANY labs, but. It's something.

[wasted-coffin-rotted-corpse]

Hey bitches I'm back

Used to be @Skeletal-Prince, Deleted that blog cause I got proper better after moving in with my dad. except... oops nevermind ig.

Call me Zai

I'm a trans guy but I use It/She pronouns. She/Her in like a drag queen way idfk

I have Fibro + CFS. not to mention AuDHD, OCD, and Bipolar, (+ cotards symptoms) If we're interacting one on one please use tone tags cause I'm stupid /lh

2. I'm Sol (☀️), He/They/Any, I'm genderfluid and agender, and I also use this account sometimes

I have some unspecified physical issues, Severe Social/General anxiety, Borderline PD, and C-PTSD. I'll probally post more helpful stuff sometimes, cause helping people can help me ignore my actuall issues /hj

TW + Shit:

I have a raging ED. Shocker, this blog is about it, and probs some SH stuff. I don't condone ED's, but this blog is the dumping ground for all my bad shit so... don't like it? block me. or report me. idgaf -Zai

however, being serious for a second, if you are in recovery, or if this could be triggering to you, please don't interact, all I can say is that I'm at my happiest when I'm recovering, and I wish you the best <3 -☀️

[colitisandme]

Larry

Firstly let me just say if Lyme disease was a place, it would be on fire, people would be running around looking for the sole fire extinguisher within 300 miles, everyone would be shouting at each other and yelling at their own reflections, windows in shops would be broken, puppies howling, babies crying, and all the residents would hear a loud alarm go off at 12 midday sharp, and upon that appointed hour, all who were outside would be chased by a very angry, hungry bear… for an hour…Oh, and none of the letterboxes would have house numbers on them, and every time you opened one it would fire a torrent of peas at you… I truly hate peas. In my opinion, they are the scourge of the vegetable kingdom and should be avoided at all costs.

I think Larry came to become my longstanding houseguest about 10 years ago. When I got bitten after bathing my now husbands dog. She had bounded joyfully into a dirty water lake and I had the honour of making her smell less like a gym sock. Whilst making sure Amy the dog got the best bath/spa treatment ever, I got bitten. By Larry. Hiding in Amy’s fur. Clearly he thought that residence de soggy dog fur was not upmarket or suitable for him, and he saw my uncovered pale leg as a step up in accommodation. Whatever the reason, he decided to bed in, take off his many shoes, and start unpacking his IKEA flat pack furniture whilst simultaneously calling up his buddies and organising a non stop house party from then on. I didn’t know it was Larry at the time, but what I did know with all certainty, is that I had 3 massive bullseyes on my leg, and my legs were starting to swell up like two overfilled sausages. The dog by the way was fine. Of course.

I hotfooted it to A&E after feeling like my legs were going to burst open. The only thing that would stop my legs exploding was a dose of IV hydrocortisone. I felt awful as well. Like I had caught flu and someone was using my body as their own personal thermostat. I think I had a few days antibiotics, I also know that I came out of A&E and went to a job interview a few hours later… after being pumped full of hydrocortisone and enough painkillers to stun a rhino. I can’t tell you anything about what happened during that interview, but for some inexplicable reason I got the job. Maybe they appreciated the wide eyed, dragged through a bush look. Maybe that’s the way to go for all future employment opportunities.

I actually asked to be tested for Lyme disease during my last hospital stay. My spine had decided it no longer wanted to be inside my body, and in my opinion was trying to forcibly escape. It had gone into a permanent spasm, and even though I thought I could massage my way through the pain, I ended up curled up in a ball, swearing, writhing on the floor and cursing the fact my door keys were in a place which was not sadly floor level. After I was admitted to hospital taking every single painkiller they offered me, and coming with new and fun exciting swear words to describe my pain level during ward rounds, my beloved husband and equally beloved and savvy mother had done their research and decided that I may have Lyme. At this point I had almost shouted house on the ‘Chronic illness’ bingo card, and I got the feeling that if they could, they would push my ‘please sit here and tell me what’s going on swivel chair’ through the door and out of the ward into the mouth of an awaiting dragon. They almost certainly viewed me with a mixture of exasperation, perspiration and furrowed expert brows. “It’s Fibro” they would tell me confidently. “It’s not” I would respond with my head in my hands… “course it is” nodded Doctor number 5…. “So you erm you know, keep doing what you’re doing and we will refer you to our head guy” only to find out it’s a broom in a cupboard. So I was apparently tested… begrudgingly… I can only imagine by Dr broom handle because when they discharged me, still gritting my teeth and unable to stand properly or move my neck, they basically yelled after me “it’s not Lyme byeeeeeee.”

Spoiler alert yes. Yes it bloody was. 10 years after this sodding Larry came to stay and continuing to decorate my insides with vibrant colours and exotic furs. Someone finally helped. By this point I was struggling. Now I deal with pain fairly stoically. I also deal with any of my many chronic illnesses with humour and positivity. It’s my coping mechanism. But I had points where I would be inwardly and outwardly cursing the b**ard who invented stairs because I would be losing my balance and turning into a human vibrator because my hands would shake. It also appeared that the entire bloomin internal Jess body orchestra had started off their winter season by playing flight of the bumblebee, using every single nerve point in my body as piano keys. They must have got rave reviews, because they have continued their repertoire to include brain fog concerto, and the hibernation symphony in C. And immune system knock out piano solo in D minor. Thank goodness for German labs, thank goodness for my wonderful Lyme specialist, thank goodness for my tenacious Mum and stubborn husband, for getting all the research together, for fairly sternly encouraging me to make the appointment and finally making me get tested.

I was so sure it wasn’t lyme. So,so sure. In fact when I got my super positive results for Larry, (who has now branched into his singing career singing all the hits along side his back up singers; co infections Bartonella, Babesia and Borrelia), I was in my friends car, going to dinner blissfully unaware everything was going to change. I remember vividly getting the email, and then subsequently going into a garbled expletive filled rant explaining to my startled friend why previous Drs have all the nouse and common sense of a grilled aubergine. I then looked at my report and my blood cells looked like furry creatures. Misshapen, fuzzy, furry looking alien blobs. I don’t know anything about what blood cells are supposed to look like under the microscope, but I can safely say they are not supposed to look like they are alive. Larry and his trio had had a field day over the past 10 or so years, it looked like he had grabbed my blood cells and then proceeded to try and sculpt them into another shape with all of his feet. It was horrifying. Truly horrifying. How the hell could they have missed it?

I am now acutely aware that Lyme is completely overlooked in the UK, and also in other parts of the world. It is misdiagnosed, mistreated, misunderstood. Research is underfunded and drs are woefully ignorant of the symptoms. Mine were and I am now a passenger in Larry’s super fun happy rollercoaster ride of pain, brain fog, gut issues, hyperactive or completely catatonic immune system, skin issues, joint issues, pain and fatigue. And there’s no sodding toffee apple at the end of the ride as a reward. It goes on and on until I am completely nauseous, confused, full of rage, tears and vertigo. It effects every cell, every muscle, nerve, neuron, and because it wasn’t picked up and treated, it’s now in the chronic stage, which is an absolute minefield to treat.

So nearly 6 months post diagnosis, here I am fighting. My ‘friendly drugs cabinet’ looks like a pharmaceutical wonderland. My schedule is bananas in regards to what to take, what to eat, what to bathe, soak, marinade, brush, rub, drain… I am on a concoction of functional medicine to try and will Larry and his trio into submission, I drink funky teas, I watch what I eat, what I drink, how I sleep… it’s hard work. The routine is hard work. I am tired, I get fed up and sick and Ill and sick of being ill. It is hard. It is relentless. But I will defeat that crafty son of a b**** and banish him out of my body. Because the choice otherwise is too much to bear. I refuse to lose. I refuse to let them have their own way for any longer. So yes it is exhausting and expensive (because Larry and his trio are not treated on the NHS) and yes my treatment cabinet is bursting at the seems, and yes the results from mould exposure means there is more to do, but I am officially serving Larry and his friends with their eviction notice. They are not welcome anymore and I urge anyone who may think their symptoms don’t fit the usual ‘diagnosis mould’ then please stand up for yourself, follow your gut, seek a second opinion, third opinion even. Be your own advocate. You are not alone. We are in this battle together. Don’t give up. I will draw up the eviction notices and you can bring snacks and placards. Let’s do this. After all our our disease may be invisible but we sure as hell are not.

[red-butterfly-project]

I just walked into my bathroom to weigh myself, feeling like shit because I'm having a fibro flare. I look over to see my beautiful black fur baby Luna. She's laying on my shower chair and meows at me. I'm not lying when I say it made me smile so hard that I actually felt okay for like 3 seconds. Cats are the best people.

[bishiglomper]

Sissy has been working so hard to clean up the downstairs. It was really bad. Like when my grandma had her own place, there was a tiny little horse path (like 8 inches wide) through the hills of junk and debris. We didn't even have a solid path...

I mean you could still see floor in some places. But the living room was really choked.

I thought for sure she was only going to be able to condense and tetris things more tightly. But it seems like she may be actually moving shit

I don't know what she's doing with it. But so far nothings piling up the walls.... 👀

I keep asking for jobs or if I can help but they say no. I practically beg just to make sissy coffee. They also come take the baby if she gets fussy. 🙄 (not crying. Just fussy.) Against my will, mind you.

Mom asked me to take care of a doom box the other day. I actually managed to do most of it.

I wasn't expecting to, honestly. The problem being we have too much shit that just doesn't have a home. But the bin was manageable. Mom was super pleased. And she asked me to dry and put away cups. There was a strainer full of other stuff so I did that too. She acted like I went above and beyond.

On one hand it's nice not to be expected to do things, it certainly makes the PDA quiet, but 👉👈 it would be nice to not feel like an entirely useless, mooching bum.

I know a lot of it is because I'm easily worn out and flarey. But Mom and sissy are too! I think mom works for a few hours and then goes to bed for a while. And then keeps doing that. Even after declaring bedtime. 🙄 And sissy is so emotionally and physically overtaxed. And that was BEFORE she started "babysitting" nearly every day. All day.

These people frustrate me

I've always let things go until they got a little bad but then I would get a bug up my butt and go into a major kick ass cleaning mode. Like whole ass get-ready-for-house-inspection cleaning.

But then people started sleeping in the living room. I feel my best at night. Also I get immensely frustrated and angry so I need to work alone otherwise I rage-quit.

And shit gets so bad so fast. By the time I want to do somthing about it, it's already paralyzingly overwhelming. Not to mention I just don't know what to do wth it. It's mostly sister's family's shit.

It's been years since I could work like that though. fibro and shit has gotten so bad since then.

But seeing the living room getting clearer.... seeing organized tables and shelves.... seeing a usable kitchen....

It makes itchy to do stuff.

I'm feeling hopeful and motivated instead of overwhelmed.

AND NO ONES SLEEPING IN THE LIVING ROOM

Niece practically lives at boyfriends, they've been putting nephew in my room on the bottom bunk. And sissy doesn't have the baby most nights, so she doesn't need the special chaise chair that makes cosleeping easier. 👀

Also I've had coffee tonight because I had a headache that wouldn't go away. So I'm caffeinated.

I dunno what to use this special, magical spoon on though. I do best organizing an area, with no bending down.

I'm gonna try to find something though.

I used to live for hearing people come down the stairs, stop and go "Holy SHIT" 🤣 it was the most satisfying praise.

Hopefully I can find something that'll at least gimme a "wow, sissy!"

But anyway all this is just so we can put our tree up and take all the "First Christmas " baby photos. We wanna go ham. Baby turns 6mos on Christmas eve exactly. 😁 fun times

[madgastronomer]

Allow me to suggest the work of Celia Lake, who writes cozy historical fantasy romances. Now, Celia is a friend of mine, I will say, but she's also a damn good writer. Off the top of my head, just the ones I can remember, there's a protagonist with fibromyalgia, a protagonist with an ankle injury that resulted in chronic pain (actually, the former is the mother of the latter), a secondary character who uses a wheelchair (well, he got to be a protagonist in a novella, but he's awesome whenever he shows up), people with PTSD all over the place (because WWI is one of the eras she writes in), an amputee, multiple cane users, a blind protagonist, a protagonist who is hospitalized and gets shit treatments... there's more I just can't remember. Also, she has a reasonable, low-plot-hole (actually I can't think of any) hidden magical Britain, and more variations in characters include multiple types of neurodivergence, Jewish characters, Indian characters, a Persian character, older characters, younger characters, queer characters (including an ace protagonist), and and and... and I haven't even finished catching up with her backlog yet.

I'm particularly pleased that one of the series is artisan-magic focused, so like, the magics that go into shoemaking, things like that. I love craft magic.

And she does solid historical research. What Jewish communities in Spitalfields were like in the 1920s, the history of theater, war profiteering in WWI, chemical weapons development leading up to WWII, and even what the weather was like on any given day.

There. I have enthused on behalf of a friend who is also a really good writer.

You can jump in pretty much anywhere, I started with Pastiche, the one with the protagonist with fibro (her name's Alysoun). Pretty much any given protagonist is also going to show up in other books, they're all interconnected, but at no point do you actually have to know about the background of Rhoe's brother who shows up on five pages of Carry On, and then turns out to be this super-important guy when you encounter him in his own book, in order to enjoy it when he gets name-dropped anywhere else in the series. There are places where one book has spoilers for others, if you're worried about that, she has a page on her site about reading order. As often happens, her first book was not her best, and that's ok, so maybe you want to jump in elsewhere, or at least if you start with Outcrossing, remember that it's a first book.

Also, she's an indie author, self-publishing ebooks, she works a day job, and she's coming out with like four books a year. And free extras. Because she's impressive like that.

Celialake.com, go look. I'll stop now.

I wish there was more representation of disabilities and chronic illness in fantasy, science fiction and action genres.

Not just a side character with 30 seconds of screentime. An important character that doesn't just exist to further the storylines of other characters. I want a character that doesn't get "cured" or healed. A character that stays disabled and/or chronically ill. A character that isn't afraid to ask for help. One that doesn't think they're a burden and doesn't try to hide their disability/ chronic illness.

I want to see how it affects them, not just know they're disabled/chronically ill and it jist never gets mentioned again. I don't mean it should be their entire personality but being disabled and or chronically ill can affect many parts of life.

I just wish there was more representation of disabilities and chronic illness that shows every part of it. Especially in fantasy and science fiction it's lacking.

[chaoscoffeeandbaddays]

I haven't forgotten. Since my last post, my sister boxed up all my stuff from my parents house so she can move in there, and under the cover of night without a word to me, dumped 5, yes FIVE, SUV carloads of my stuff in my driveway. And when I called her out on how shit that was to do without texting me, she sends this whole effing diatribe on how me being on a single income isnt her fault, me being a hoarder isnt her fault, me being LAZY isnt her fault. Apparently, leaving my stuff there when I was forced to move into a TENT was TAKING ADVANTAGE of my parents. I started moving stuff into a storage unit and even though Dad told me not to and that it could stay, I still did move out what I could fit in the storage unit. I continued paying board for MONTHS after I left because my stuff was still there, until Mum DEMANDED I stop. But yes, I'm 'taking advantage'. She decided she wanted to move in by the end of July but renovate first and I told her straight up that I had my first house inspection June 28th and couldnt move anything before then, I was still unpacking and cleaning my new house right up until the moment the agent arrived for the inspection. I even called in sick the night before and worked through the night to have it ready. My fibro and arthritis make me epically slow. I try my best but I cant just try the pain away.

Anyway, she 'gets' that I have pain but that doesnt excuse me 'making other people wait until I can be bothered'. I dont have a problem with her boxing up my stuff. So its out of her way. I dont have a problem with her bringing it over. I have a big problem with her not saying a word and sneaking over in the middle of the night to leave it all in my driveway. The driveway of my rental, on a main street where my landlord could drive past at any time. Just a simple text it would have been fine and she could have saved both our backs by not bringing the stuff that was to go in the trailer for the tip ( a trailer I couldnt fill with my stuff myself because it was still full of HER stuff).

Mum and Dad are putting the house in mine and my sister's names with a granny-flatting clause, so we can inherit the house while they are alive, not have stamp duty or capital gains tax on it, but we have to keep a roof over their heads the rest of their lives. It doesnt have to be THAT roof, we just have to house them. It surprised me when my sister said she wanted to buy ME out because she had always been clear that she didnt want it. But I'm glad because I could no longer live with Dad and wasnt in a position to buy her out. She asked if she could not pay me out until next year when she came back from Japan and I was like "hey thats fine" she was putting a lot of money to the renovations before moving in so why not have her being able to live rent free for a few months to save up for a nice holiday before having to buckle down under a mortgage. See, once the house is in joint names, if one of us is living there, the other is entitled to their half of the rental value. But she's my sister, I wasn't going to ask her to pay rent to me just because my name is on the title. Besides, I knew it would take me a long time to finish getting my stuff out. I even offered to leave the bed, TV, and a couple of cabinets, so my old room would already be set up as a guest bedroom. She never said no thanks, she actually said "ok, cool." Then, when she dumped everything here, it included those things, things she KNEW were never coming here. But I digress. Half rent for my parents' place would be about what I'm paying for rent in the tiny house I'm in now. It would make my life so much easier. I would be able to afford the physical therapies that I haven't been able to in a long time. It would do wonders for my life and my health. But it was money I wouldn't have had anyway, so I could wait another year to get my health back on track, if it made it easier for her. My only sister.

She doesnt think she's done anything wrong. And is now saying she doesnt want to move in there and she'll tell our narcissistic father that I'm coming back. I dont think that apple fell far from the tree. I cant get it through her head that ALL SHE HAD TO DO WAS TEXT ME TO ASK WHAT TO BRING AND WHAT TO PUT IN THE TRAILER INSTEAD OF SNEAKING AROUND. Now, according to my father and her partner, I'm the one in the wrong. Because I said that's shit and disrespectful behaviour and if she doesnt have enough respect for me to send me a simple text message, why should I give up a year of rental income that's almost as much as I earn in a year. Oh that's right, because it's not HER fault I'm poor.

[sicklyscribe]

hey so im sorry if you're not comfortable talking about this, but how did you get diagnosed w fibromyalgia? My mom suspects she has it but she keeps getting dismissed by doctors who think she's exaggerating etc

I’m fine talking about it!

It took me forever as a child (10 years) to get any kind of chronic pain diagnosis beyond “growing pains” and I was so happy to be acknowledged that I didn’t want to accept the fact that the diagnosis didn’t make any sense. I was told that my fallen arches/flat feet caused my leg pain, since at the time my pain was only in my legs.

That changed! I didn’t want to accept that I had full body pain, so I ignored it. I didn’t seek care for it.

I got diagnosed with fibro kind of by accident, so I don’t know how to give the best advice to your mom other than what I have heard other people say: ask for a written record of the visit so she has documentation of every time she was denied treatment. I have heard that this question is very helpful in convincing/lightly threatening doctors to take you seriously.

For me, I went to my doctor because I was worried about numbness in my toes and she sent me to a foot doctor. This guy found nothing wrong and during the visit I mentioned my flat feet and my chronic pain and flat out asked “does this explain my leg/hip/back pain” and he said “no. It does not.” since he didn’t see any long term damage externally or in X-rays. HE was the one who referred me to a rheumatologist.

Rheumatology mostly deals with autoimmune diseases, which some people think/thought fibro might be, so they are a likely place for prospective fibro patients to be sent. The truth is that no one really knows enough about the condition to be comfortable in diagnosing it except for docs who might turn out to be wrong (there are other chronic pain conditions very similar to fibro!) or pain specialists, but as far as I know in the US I think you need your diagnosis before you go to them? I could be wrong. Basically no one wants to be wrong so they’d rather tell you YOU’RE wrong about your symptoms.

I was lucky enough that ALL of my comorbidities and symptoms are in line with fibro and I have NO alternative markers for anything else (except for a little bit of scoliosis). It made the rheumatologist very confident in her diagnosis since I’m basically a poster child for fibromyalgia, but other people aren’t as lucky.

One other thing your mom could do is look up fibromyalgia buzz words that describe her symptoms. The way that I describe my pain is VERY different from how the medical textbooks describe the same pain, and if she uses those descriptions and terms a doc might be more familiar with then maybe a lightbulb will finally turn on for one of them so they can help her. Things like “constant sunburn” “flu-like body pain” or “exercise is tolerated but not helpful” “appearing/worsening after physical or mental trauma”.

I still don’t know why my toes are numb but. whatever.

[thessalian]

Thess vs Untenable Situations

Temp’s doing it again and now I’m going to have to say something. Honestly, if I were not disabled, I would shrug and get on with it. I am trying to shrug and get on with it, because getting it to change long-term is difficult to impossible without a lot of babysitting Temp’s typing queue. However, I am disabled and today was hell on more than just a pain perspective. Because fibromyalgia isn’t just pain.

Last night was a broken sleep night. I woke up every couple of hours or so, partly pain and partly For No Apparent Reason. (That’s not even counting the spam call I got about an hour before my alarm was due to go off.) Before the fibro, this would have been annoying but bearable. But it turns out that fibro fog plus sleep deprivation kicks off intense amounts of dizziness, light-headedness and nausea-inducing vertigo. It’s hard to work through that kind of shit, especially when it comes on top of pain, but I figured I could cope so long as I wasn’t overwhelmed with long-ass shit.

(I mean, also it would have been nice if I hadn’t had to dig up three separate sets of results to be sent to three separate parties over the course of the day, but that appears to be my sole and solitary job because of course I get all the shit-work. So never mind.)

Anyway, point is that on top of the digging up results and the usual day-to-day stuff, Temp was cherry-picking basically all day. The last bit I couldn’t even deal with because given the last lot of long complicated bullshit she lumbered me with, I didn’t have time to do yet another of this one guy’s overly long dictations that she will avoid like the plague given the slightest excuse. So she’s going to have to deal with that in the morning. But I got basically everything else. And obviously I was slow as fuck because I’m having trouble focusing on so many levels. Pain breaks focus. Sleep deprivation breaks focus. Dizziness breaks focus. Vertigo makes it hard to see words on virtual page. There are bad days and there are bad days, and this one was a bad day on so many levels it’s kind of ridiculous. And yet there she is, leaving all the long stuff for the person with the neuropathic pain condition with absolutely no thought of anyone but herself.

So the wording I’m thinking of is this:

Dear [Scruffman],

I know we’ve had the conversation before about [Temp] leaving the longer, more complicated dictation for others to deal with. Unfortunately, this continues to be a problem. As I understand that it’s difficult to ensure that she consistently takes dictation from the typing queue in chronological order instead of skipping those she feels unable or unwilling to type, under ordinary circumstances I would probably leave this lie. However, my experience with her doing this [today] has underlined the problems with this in terms of my disability status. I was having a particularly bad day [today], and while the pain was one issue, the more problematic part of it was the dizziness and vertigo I was experiencing for the entirety of the day, which made it difficult to type even the simpler reports. Being left with large blocks of longer and more complicated dictation made the day a struggle, both in terms of productivity and in terms of my health. I am unsure as to how best to resolve this; some days I can manage perfectly well with larger blocks of longer dictations, but I struggle with them on bad days, and it’s impossible to predict which days will be bad ones. I wonder if we could discuss what steps we might be able to take when I’m experiencing particularly bad symptoms to keep the division of the longer dictations more equitable. I am happy to do my share of the longer dictations even on bad days, but large blocks of longer and more complicated dictation left at the the top of the queue because [Temp] has taken only the shorter ones is becoming more of an issue. If required, I can provide screenshots of this.

Regards, [Thess]

I may have a bash at it some more later. Vertigo is not conducive to formal work email format. But I am going to have to say something because this is becoming untenable and it’s a disability accessibility issue now. I mean, it always has been, but I have to do something. If I have another day like today, when I’m slow as fuck because I cannot focus through pain and vertigo, I am going to lose my shit.

[inklingofadream]

I have fibro, and I've had pretty good luck with being referred to a rheumatologist (to help with ruling things out since it's a dx by elimination but also to id the worst problem areas when he sent me for xrays) and then to a physical therapist. Movement and strengthening exercises can be really helpful, but most "beginner" or "easy" workouts online are written for abled people, I couldn't do them either due to them being too intensive and/or because they required much better balance than I had anymore. Physical therapy has set me up with a daily regimen of exercises I can actually do (even if they're slightly comical- it's a real boost to the ego when someone walks in on you panting from doing an exercise that to an outside observer is just sitting next to a yoga ball lol) and regular appointments, gradually tapering off, that help with more intensive stuff under supervision.

In general standing is harder when your muscles are weaker/your posture and stuff is suboptimal so stuff has to work harder to keep you upright, and strengthening them can help. If part of the problem is muscle tension that might also be a good target for PT. This is the best online explanation I can find of the single exercise that helps my pain the most, I do 3 sets of 10 every morning and evening.

(caveat that me/cfs is a different animal wrt physical activity- a lot of my fatigue turned out to be related to a cycle of pain to depression and insomnia to exhaustion to increased pain, but doing mild PT type stuff and making it worse it a big red flag)

You've basically got to keep banging your head against the wall or swapping doctors until someone listens unfortunately. My PCP eventually prescribed me daily gabapentin, which I take the maximum dose of, and diclofenac to use as-needed (it's like... basically ibuprofen but More as it was described to me). The rheumatologist had more experience with daily pain management meds, so he took me off the diclofenac because it wasn't doing much for me and prescribed daily celecoxib instead, and I've had pretty good luck with that combo thus far. Finding specialists who'll take non-elderly patients was a huge pain even with referrals, and in my experience any given doctor has like... a totally different understanding of what's available to treat chronic pain.

Also if your dr is dismissive and you can't get an appointment with someone else, try bringing a friend or family member with you as an advocate- especially if it's someone who sees you often enough that they can attest to seeing you in pain/wiped out frequently. Double points if it impacts them in some way, sometimes doctors care more about abled people being inconvenienced or concerned than disabled ones being in pain. I've made much better headway with my mom saying she (and a variety of other "real" adults like my grandma instead of just presumed-hypochondriac-because-young me) thinks I need to be checked out for fibro or arthritis than saying the same myself. I literally once repeated myself six or seven times to a neurologist and he only actually listened when my mom said the same exact thing.

people with chronic fatigue—how do you manage the fatigue when you have a lot of things to do?

my doctor thinks I may have fibromyalgia but she’s been overall pretty unhelpful/dismissive, and I need a few tips for figuring out how to conserve/boost energy as I finish the semester and prepare for a busy summer. Caffeine doesn't help me because of my ADHD, and sleep rarely helps.

Specifically, is there anything that helps energy while standing up? I don’t have any issues with walking, but when my fatigue/muscle and joint pain/muscle tension flares a lot it makes standing up pretty exhausting, so outside of making myself go to classes when I can I pretty much stay in bed or on the couch as much as possible, but that’s not good for my grades or my mental health.

Any help is appreciated!