Periwinkle

She/They. Chronically ill/disabled. Colombian🇨🇴 in Germany. Summoning demons in my free time
#EDS #POTS #RareDiseases

[Periwinkle @PeriwinkleWink]

Non-disabled people have very unrealistic expectations of what medicine can and will do for them if they get sick. Media portrays quite a false idea of how medicine and hospitals work. It's heartbreaking to see how many people are finding out the hard way.

[Joanna No Banana @JoannaNoBanana]

I don't know which chronically ill person needs to hear this but cut your hair.

It's so much easier to take care of brushing and washing it when it's shorter.

Friendly reminder that you can start with just cutting a little bit off the ends at a time.

[Periwinkle @PeriwinkleWink]

The idea that EDS is "rare" is holding back resources for many people. At least in Germany EDS is still very rarely diagnosed and the treatment options are very limited. Imagine how many could access basic treatment options if there was more awareness about it.

[Periwinkle @PeriwinkleWink]

Ever since getting diagnosed with an actual rare disorder I've come to realize how silly it is to think EDS is rare. I come across incredible amounts of people online and IRL with hEDS, there's tons of information, papers, groups. Only doctors "have never seen a patient before".

[María Richardson @_diatoma]

Sí! Many say there’s no or little #MECFS in Mexico. The diagnosis is almost inexistent, there are no ME experts, resources are more limited, few people could afford to pace even if given that advice. I fear the worst and dont have the spoons to advocate more institutionally.

[Disabled Doctor @DisabledDoctor]

I think the one thing most non-disabled people fail to recognize about the medical system is that as soon as they get sick, and I mean big sick, they most likely won’t be able to get adequate care unless their condition is common and obviously treatable.

[collagen machine broke @chronicallybeee]

huge emphasis on this.
i think a lot of non-disabled people think that if they develop a disability, there is treatment and doctors will know what’s wrong and help them.
i don’t think they consider how difficult it can be to even get a doctor to take you seriously

[Joanna No Banana @JoannaNoBanana]

Chronic illness culture is pushing yourself too far on your better health days because you don’t know when is the next time you’ll feel like this again.

[Joanna No Banana @JoannaNoBanana]

Chronic illness culture is waking up with symptoms many people would rush to the doctor for and thinking “oh wow! I’m feeling relatively good today!”

[Candace D. @DiaryofaSickGrl]

Doctors: Hmm, everything looks fine. Come back if you die though.

[cat😷🍉🇸🇩🇨🇩🇧🇩 @mercurial_moons]

“You only live once”

Exactly and I’d like not to spend it suffering from severe, constant fatigue, thanks.

[Periwinkle @PeriwinkleWink]

Had a 250mg infusion on Friday, then 100mg on Monday and I was discharged today. Ever since arriving home I'm feeling extremely weak and exhausted. It seems like these aren't normal side effects, I have zero experience with corticosteroids so I don't know what to expect.

[Periwinkle @PeriwinkleWink]

Fellow chronically ill folks, has anyone experienced severe fatigue, joint pain, muscle cramps and weakness while on #corticosteroids? I just came back from hospital after receiving 2 big doses of methylprednisolone over the weekend and I'm getting worried.
#NEISvoid

[Periwinkle @PeriwinkleWink]

I really hope they aren't that careless in this hospital. I wasn't even supposed to stay inpatient for so long. I didn't even stand a chance, the other patient was brought into the room during early morning hours while I was sleeping so deep that I didn't notice her arrival.

[Periwinkle @PeriwinkleWink]

I just received a dexamethasone infusion and they just put a patient with an active infection in the same room I'm in. When did doctors forget basic science around pathogens and their transmission?

[Periwinkle @PeriwinkleWink]

The neurologist was here today and performed a lumbar puncture. Nobody is wearing masks and no one is giving me information about her status because of privacy reasons and so on. If I happen to catch anything I'm gonna lose my shit.

[tanja.rollifraeulein.de @RolliFraeulein]

Diese ganzen Behinderungsexperimemte geben euch vor allem eines nicht: die Langzeitperspektive.

Es ist etwas VÖLLIG ANDERES für 5 Stunden im Rollstuhl zu sitzen oder nichts sehen oder hören zu können oder es jeden einzelnen Tag, jede einzelne Stunde zu erleben.

[Fiona Robertson fionaswriting.bsky.social @FionasWriting]

I'm so excited to finally be able to share this with you all. It's a zine, with poetry and practical tips for newly sick and disabled people. Let me tell you about it!

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#NEISvoid
#DisabilityCommunity
#ChronicIllness
#WritingCommunity
#PoetryTwitter

[J. Logan Smilges @jlsmilges]

In case anyone needed a crash course