24 | she/her or they/them| aroace | PCOS | POTS | | persistent iron deficiency | gastroparesis | much joint pain for hypermobility reason we have discovered, it was hEDS all along lol | bladder fuckery of some undetermined kind | also migraines :(((( | reasonable accomodations are reasonable!!! and legally required to be provided!!! | feeling some hope (and also much pain) in this chilli’s tonight.
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Everything sucks and is awful. In so much pain from nothing. I’m so overwhelmed.
#in a down phase atm I think#contemplating new diagnosis has got me grumpy AF#not enough to have connective tissue disorder with 20 comorbidities#let’s invite paternal autoimmune issues to join the party#I’m at the end of my tether. yes I have new meds. and they work. which further confirms the autoimmune fuckery hypothesis. only downside is#my weak-ass stomach can’t handle NSAIDs so I have to shove it up my butt instead#that’s been a bit distressing. and so many public holidays. and things not going to plan. I’m overwhelmed.#I need to do my fucking work but pain and public hols fuckery is not on my side rn#worse fatigue. weird pain yesterday. weird tightness in my foot today. split skin under one of my toes.not being able to sit on chair#painful itchy. everything bad bad bad. nausea. feel awful. stressdddddd.#the ups and downs of chronic illness#I so scared for the concept of dma’s if it does turn out to be seronegative inflammatory athritis#but hey it’ll be the first condition I can actually halt progression on#I wish people understand that sometimes chronic pain is like everyone is screaming what’s wrong/hurting at you. at the same time. and you#gotta wear earplugs to make it through the day. but sometimes that doesn’t stop someone steaming right in your face and you getting no#reprieve. I’m trying to mask so much shit here. it’s#it’s not great atm. scream
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everyone's all about queer subtext until it's aromantic or asexual
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Shoutout to the main receptionist at the hydro pool I go to. My sister was visiting so I got her in at the same time (I’ve done this before with my mum). When she went to show her student card for concession, the receptionist was like, “honestly? I just charge everyone the concession rate. Everyone who’s here (at the hydro pool) is here for a reason.” We stan a queen. Given things like NDIS plans and health care concession cards are out of reach for a lot of people, I think it’s lovely that this receptionist acknowledges that and tries to make it as accessible to everyone. We love to see it.
#the ups and downs of chronic illness#tales from the hydro pool#disability#chronic illness#idk it’s just really heartening to see people work within systems to try to help people#and I know she’s studying med/something med related. gives me hope
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chronic fatigue is just a never ending cycle of “maybe I just need to push myself harder” -> flare up -> recovery -> “oh now that I can do stuff again I need to make up for all the time I spent resting” -> flare up
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And/or PEM. I’ve had my moments over the last few days since overdoing it on Wednesday, but today has been proper rubbish. Woke up. Breakfast, sat down with some tv and my knitting for a slow start to the day. About 2hrs later, felt bad enough I had to go have a lie down (normally knitting might exacerbate pain, it rarely gets me fatigued like this). Made and ate lunch. Lie down. Get dressed. Lie down. Do 0.5 chores (put a few dishes away, popped a load of laundry on). Lie down. Lie down. Lie down. I had things I wanted to do today. But. Lie down. God I wish I had energy.
Physio a few days ago: so have your pots symptoms been worse recently?
Me: nope don’t think so
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Me of today: okay actually based on the severe pre-syncope and horrible fatigue and weakness I’m feeling…. Maaaaaaby physio was onto something. Damnit.
#fatigue#the struggle is real#ups and downs of chronic illness#took pain meds that sometimes help fatigue so maybe thingsll look up#regardless I’m pretty much moving from bed to couch and back again#gonna rest even if I hate it#the temperature dysregulation is a dead give away for PEM. love it being a balmy 25C and I’m wearing winter clothes and heat pack and#all my blankets feeling like I’ll never be warm again#gah I want to bake ://///// I want to craft ://///////#pain is so easy to deal with in comparison. I haaaaaate fatigue
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Physio a few days ago: so have your pots symptoms been worse recently?
Me: nope don’t think so
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Me of today: okay actually based on the severe pre-syncope and horrible fatigue and weakness I’m feeling…. Maaaaaaby physio was onto something. Damnit.
#the ups and downs of chronic illness#postural orthostatic tachycardia syndrome#dysautonomia#physio was good. re my issues with loosing people in my care team. I have an appointment booked with an EP who specialises in fatigue!#so I’m hoping that’ll be good#and there’s a great person for hydro that I’ll be handed over to closer to my program review time (it’s a quarterly thing)#I just am really struggling with fatigue atm. not sure why. we love /sar#anyway time to sleep I think. not that it’ll help ://///
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Screaming. Crying. Throwing up. Changes to my care team ahhhhhhhhhhhhh.
#this post brought to you by my EP leaving the clinic#same place where my great massage person is moving on to be a physio (yay for her rip for me)#so maybe I just take a clean break with them. I see neuro physio at a different place and they can prolly hook me up with people#just. the unexpected call. and I just froze at the options of rescheduling. seeing a physio in the interim. or going on the EP wait list.#at least they gave me a decent ammount of heads up#unlike some medical practices cough cough#(when the uni clinic calls to cancel your appointment. and you ask to reschedule. and only then do they tell you your GP of two years#is actually leaving before the week is out. shoutout (derogatory) to that receptionist too. they’re part of a student group known for#really fucked up things. so love having that guy entangled in everyone’s medical info)#I’m just tired#my EP was really great for hydro and I’ll always love him for how he’s approached that with me#but whenever we try trasition to more land based stuff I have fatigue issues and it’s been hard working around that#I do think the neurophysio place will probably be a bit better on that. they already have been.#I hate how much this kind of things derails me. alas autism#the ups and downs of chronic illness
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I luckily haven't had to deal with much chronic pain or hand pain yet, especially with regards to baking (crochet is another story). That said, these look like some pretty solid tips! There's also some in the comments section.
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Why does everything I love hurt my hands?
#the ups and downs of chronic illness#hypermobile ehlers danlos#hand pain#just compounding hans stuff atm#Christmas knitting and making cookies and cleaning and owie#starting to dream of having a stand mixer lads#with a dough hook#you’d think the fine icing would be what’s fucked my hands but I think kneading the dough did more damage#I should have been wearing my braces more#doing nerve glides bc my friend is on me re not trashing my hands (mutual pact)#but my flared dizziness is making some of them a bit tricky#in another life the flesh is strong and spirit willing I run a cozy little bakery and make things#alas doing#double batch gingerbread nerfed me#haven’t even decorated all of them. been pacing them out over a few days#anyway I hate when my hands limit me. everything involves hands#complaining about hands on tumblr involves hands#silly phone game as distraction needs hands#honourable mention to my GI tract tor runner up body misery atm#had eggs (bc icing) and so extra yolky scrembly eggs for dinner a few nights ago. I live in regret. olfactorily.#oooh the sulphur farts are bad
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Okay the soup was worth it. Hot damn that’s good soup.
Meal prepped too close to the sun (shoulder nerve pain. In my good shoulder).
#it’s just a regular veggie soup but I think bc I sweat the onions down first it’s sweeter than usual#garlic + onion my beloved#soup my beloved#gastroparesis my beloathed#I’m a bit concerned about the holidays food wise#my gastroparesis has been flaring since my norocrypto stomach he’ll#and like tasting the smoothie you had 5hrs ago is not a great sign#so I’ve been trying to keep it simple#holidays can be tricky in that regard
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Meal prepped too close to the sun (shoulder nerve pain. In my good shoulder).
#had a bunch of things that needed using up#made a stir fry with tofu#(also enjoyed for lunch(#)#grated some onion to freeze (I had a shittonne of onions)#and now got a pot of veggie soup slowly simmering away#I’m also hoping to get onto my Christmas baking tomorrow!#gonna experiment with natural food colours for a friend so that’ll be fun#blue spirulina powder seems like magic#but I’m gonna get myself a drink and have a rest now
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Things that made my year better, in no particular order:
Getting a lotion wand
Neuro rehab specialist physio
Rediscovering stewed fruit
Rediscovering apple rhubarb crumble
Going back on iron tablets
Starting anti depressants
Being more open about my neurodivergence and EDS
Letting myself be silly goofy (aka unmask a bit) around friends more
Cultivating a little garden
Trying more soup recipes
Travel (I love vaccine technology! Did me an absolute solid)
Having a really good sleep hygiene routine
Hydrotherapy friends
Trying some new hobbies
Making time for the library
Baking more (box mix ftw) and sharing with friends
Making my hair purple (feat. my siblings being good at hair)
It’s not been an easy year by any means. Thesis writing, an intensive, fieldwork. A major health relapse in the middle of the year. Expected and unexpected family losses. Grief. Rough times for friends. But it’s also been a good year. May next year also bring good things.
#the ups and downs of chronic illness#chronic illness#gastrointestinal fuckery#hypermobile ehlers danlos#fieldwork ‘24#a retrospective#I get maudlin at this time of year#but it’s good to think that so many things this year made the year better#my loose goals for myself next year is to try make it to more local theatre/ local music#and to try more new recipes
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They should invent knees that don’t hurt.
#the ups and downs of chronic illness#hypermobile ehlers danlos#my knee is still cranky from my fall on fieldwork#and the humidity withdrawal#my whole body is :///// from the combo of very bad bug trifecta#not having done any hydro for the last two months#(and I know I’m not cleared for the pool til new years. hopefully)#and generally feeling blah and not moving as much#I feel like that comic#what do you want for Christmas? dragon#oh… that’s a bit tricky-anything else?#cure all my chronic pain!#oh…. what colour did you want that dragon?#(the answer is purple ofc. but I would like no pain too)
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It sure is something when your bowel movements are so painful and distressing that you have to self soothe by rocking back and forth and making weird noises while doing them. Real fun thanks body.
#gastrointestinal fuckery#the ups and downs of chronic illness#I mean the good news is this is mostly normie GI illness induced#I picked up a smorgasbord of pathogens in the tropics. alas#came back with not 1 not 2 but 3!!!!! tummy bugs#cryptosporidium#norovirus#and some bacterial thing (which did respond to azithromycin)#so I’m currently not doing as badly as I was the first few days#but I am basically isolating bc my symptoms haven’t resolved ye#and the travel doc has started paperwork for the one drug that might help the cryptosporidiosis a little#if it’s still an issue in another week or so#the norovirus has def put me in a gastroparesis flare. love eating 1 sausage roll and regurging a bit of it 8hrs later#stomach was bad idea. why evolution why
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It’s just me and my heat pack against the world
#the ups and downs of chronic illness#gastrointestinal fuckery#fieldwork ‘24#I seem to have brought a tummy bug back with me#straight up wasn’t having a good time yesterday#early flights + turbulence + upsetti spaghetti stomach was an interesting experience#is it good that I have an overly tight pelvic floor? no#is it helpful specifically in this instance? yes#I’m feeling a bit better but also pretty wiped#that being said it’s been bit of a stressful end to fieldwork#had to change one leg of the journey at short notice due to a road blockade#had a fall on smooth pavement 2 days before leaving. v salty at myself for that one#and it was my non bastard ankle too#and then tummy stuff#anyway I’m resting and watching trash tv but it really is just me and my heat pack against everything else rn
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Advantages to being in the tropics:
My joints are pretty happy with the humidity- yay less pain on the daily!
My nails are growing ridiculously fast I feel.
Dry skin issues (nose, ear, hands) have cleared up. Yay moisture!
I’ve been pretty lucky re migraines so far.
Food has also been working out okay. Which is good. More meat than I usually eat, but I’m doing okay. Lot of soft fruit which is divine.
Disadvantages:
You know you drink a lot of water. But when all you can drink is bottled water you get a pretty ah, visual representation of how much you’re really drink by the waste you leave behind. It’s a looooot of water bottles. We keep leaving these little “water bottle graveyards” in our room.
It’s hot. Humid. My pots has been a little fussy, and I’ve upped my am meds to give me a bit of a better chance. Get a bit woozier than normal, but not having as bad a time as I thought.
Sweating like a pig with ASF (African swine fever). About as pink as one, too.
Swollen legs most days with blood/fluid pooling. Bit irritating. I do have compression socks I should be wearing,,,, but hooooootttttt.
Sunburn (my own fault). Needed to remember that being on photosensitising meds means to cover up more, despite sunscreen, even if the singlet feels cooler. Between covering up, umbrella, and spf 50 I’ve not had a repeat incident.
A few mozzie and bug bites, but really not that bad.
On the whole I’m having a great time. Yes it’s a little tricky and yes it’s a bit uncomfy but it’s so much fun and I’m learning a lot.
#the ups and downs of chronic illness#fieldwork ‘24#have to say#the whole EDS pale translucent skin stuff really stands out when when you’re the only white people in town#are you married count: 2#are you Christian missionaries count: 1#cool new foods count: 5#only a week til we start the saga of heading back home#just a car and a boat and a plane and another plane and another plane. it’ll take us 3 days#but I hope to come back. it’s really nice here#no cholera no malaria. vaccine win!
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POTS at home: ooh yeah, I should drink some more water
POTS in the Pacific: water. MORE WATER. always MORE WATER. WITH FULL STRENGTH ELECTROLYTES. MORE. WATER.
#the ups and downs of chronic illness#fieldwork ‘24#I did not drink enough water on day one due to all the air travel#I def had to triage that first night#since then I’ve been doing pretty well on the hydration front#sweating like a pig with asf but what can you do#evaporative cooling towel my beloved#I do not feel great about all the plastic waste we are making with disposable bottled water but I also do not want to get cholera. so.#foods been surprisingly okay! but very westernised here#I would really like to be specific about where I am but it’s also a bit doxx-y#and I’m not about doxxing. only doxycycline.#but I’m having a lot of fun and while hydration management is a bit all consuming#my joints are really vibing with the warm humid#so you win some you loose some
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