I'm so tired of this medical fuckery

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.

[chronicillnesscaneffoffplease]

Taking the words “inspiration” and “resilient” from doctors, nurses and allied health professions indefinitely. So sick of this shit.

[chronicillnesscaneffoffplease]

Everything sucks and is awful. In so much pain from nothing. I’m so overwhelmed.

[brionysea]

everyone's all about queer subtext until it's aromantic or asexual

[chronicillnesscaneffoffplease]

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.

[identitty-dickruption]

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

[chronicillnesscaneffoffplease]

Physio a few days ago: so have your pots symptoms been worse recently?

Me: nope don’t think so

—

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.

[chronicillnesscaneffoffplease]

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.

[chronicillnesscaneffoffplease]

Physio a few days ago: so have your pots symptoms been worse recently?

Me: nope don’t think so

—

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.

[chronicillnesscaneffoffplease]

Screaming. Crying. Throwing up. Changes to my care team ahhhhhhhhhhhhh.

[bisexualbaker]

Tips for baking with arthritis and other hand-related chronic pain

With some changes to techniques, a careful selection of kitchen tools, and tips from fellow bakers, the joy of baking can live on.

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.

[bisexualbaker]

As this link nears five hundred notes, I'm just... very quietly touched at how many people are sharing it. Whether they need it themselves (or think they will someday), or know someone else who might need it, the fact that all of them are sharing the sentiment of "I want the people who love doing this thing to be able to keep doing the thing that they love" is... yeah. It makes me happy.

[chronicillnesscaneffoffplease]

Why does everything I love hurt my hands?

[chronicillnesscaneffoffplease]

Meal prepped too close to the sun (shoulder nerve pain. In my good shoulder).

[chronicillnesscaneffoffplease]

Okay the soup was worth it. Hot damn that’s good soup.

[chronicillnesscaneffoffplease]

Meal prepped too close to the sun (shoulder nerve pain. In my good shoulder).

[chronicillnesscaneffoffplease]

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.

[chronicillnesscaneffoffplease]

They should invent knees that don’t hurt.

[chronicillnesscaneffoffplease]

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.

[chronicillnesscaneffoffplease]

It’s just me and my heat pack against the world

[chronicillnesscaneffoffplease]

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.