HbSS+

A blog for my sickle cell journey. Main blog @w-a-h-a-l-a

[i-say-stupid-things]

psa: you actually are worth it. you are worth the trouble. you are not too much to put up with. your disability doesn’t make you unlovable. you’re not too much of a burden to “put up with”.

you are amazing and lovely and the right person will come and see just how wonderful of a person you are. your disability changes nothing about that

[autistic-rock]

hey hey

ily disabled people who don’t “do everything they can”

who don’t do all the things that would lessen symptoms

who don’t exercise when they supposed to

who eat aggravating foods or ““wrong”” amounts or don’t eat nutrition they should, or who don’t drink enough

who don’t take their prescribed medication

who engage in passions/activities that make symptoms worse

who do drugs/alcohol engage in other “risky” behaviors

who overexert themselves, who underexert themselves

ily if you “getting worse” & not doing everything you can about it. you perfect and valid and worth same !!! <3

[fibro-memes]

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[jenacat8-blog]

Being neurodivergent and chronically ill is crazy because you already have issues with executive functions and then your body hinders you even more. AND your sensory issues are heightened by the pain you feel.

[vasoconstrict]

I’ve been sharing my writing over on insta, here’s my first post on living with chronic pain and ocd.

[micahruiz]

i’m gonna start a revolution from my bed, ‘cause you said the brains i had went to my head - don’t look back in anger, oasis 

[Start ID/ A self portrait drawing of the artist laying under a blanket with a gang of pillows behind him. His face is partially covered, and he holds a stuffed animal of Lambchop as he sleeps. Above the sleeping figure, texts reads “I’m gonna start a revolution from my bed” with the artist’s watermark below it. /End ID]

it’s disability pride month. as i deal with a flare up and general increase in fatigue, i find this line resonating more than it does when i’m at 100% (which at my baseline, is still starkly diminished compared to someone with an average immune system)

i am grateful to live in a digital age where i can have a platform and organize, contribute to mutual aid, and find community support from online. i appreciate it as someone with a severely compromised immune system, who regularly attends meetings online that connect me to friends, queer community events, and recovery communities. i’m grateful to work from home, connect to therapists from home, and fundraise from home! 

we have been able to raise nearly $400 for esims for gaza, and i have done that from my bedroom. i pack all my orders and complete my commissions from my bedroom. i am grateful for the opportunity to do these things especially when i struggle to stay awake or i feel too weak to leave my bed. 

[mental-mona]

People who don't see you every day have a hard time understanding how on some days - good days - you can run three miles, but can barely walk across the parking lot on other days,' [my mom] said quietly.

― Jennifer Starzec, Determination

[feral-ballad]

Olivia Laing, from The Lonely City: Adventures in the Art of Being Alone

[chronically-mars]

I never truly knew the meaning of friendship until I became chronically ill and disabled. When my health declined I had people leaving left and right because I couldn’t keep up with other teenagers. I stopped having people check on me, I stopped getting invited to stuff, stopped being included, until I just got left behind. Now as an adult I found friends who check up on me, make sure whatever we do is accessible to me, always making me feel included, they are my support system.

Check up on your chronically ill and disabled friends, keep including them in stuff even if they have to end up canceling it. Being excluded for something you have no control over is horrible and no one should go through that.

[kiindr]

reminder that pain is pain. comparing it with others serves no purpose. no one’s pain is greater or lesser. different things affect different people differently. it is unfair to compare pain assuming that everyone lives their life in a parallel way.

[weltenwellen]

Andrea Gibson, "DEPRESSION [VERB]", Lord of the Butterflies

[puregrief]

"إنّي مرساةٌ لا ترسو. جُرحٌ بملامحِ إنسانِ."

[sweartrek]

[spooniestrong]

When you’re a Spoonie and you wake up from a 5 hour “nap” 😕

[lambsearandlavender]

Being on dating apps disabled is making me feel some kinda way. Just keep swiping left on person after person after person who loves hiking and only has pictures of them doing activities I may or may not be able to participate in on any given day.

[chronicillnesshumor-deactivated]

[introvertedx10]

[only-knives]

[ID: A tweet from Di @candidlychronic. It reads:

It's hard to rest when chronically ill/have chronic pain because you're never really "resting," it's more like "lying down so I don't get worse" vs rejuvenating rest like healthy people get. I'm not resting because I want to, I'm resting because I NEED to.

/End ID]

[chronicillnesshumor-deactivated]