Love this. Hmm … from my view, it looks like many in the chronic illness community lack strong, stable families of origin, including me. I’d love to read about how you built your community - and if less-than-ideal family of origin was an issue for you, how you overcame it to do that building work (ie, learned to choose friend prospects well).
On the rollercoaster(s) of caregiving - because I'm on number 2, I've navigated and learnt how to live in a paradoxical space that not many people will get, but you've managed to sum up quite a lot of it here! What may seem contradictory to others feels like thriving on my own terms. Thanks for articulating yours, so I can ponder more on mine.
How do you all get through the moments when the relentlessness of chronic pain and disability brings you to your knees?!
Hoping this community of people can relate…it can all be overwhelming even when you have love and support. The grief of losing a life and learning to live anew is my greatest challenge. 5 years in and still stumbling…a lot!
Love your post Kira and looking forward to more discussion about all the things!!
This is absolutely the question, and while I don't have ALL the answers, I have thoughts. May I please answer this in an advice-style column in the future (can anonymize!)? It is a HUGE challenge.
I’m screeching at your suggestions Diseased Dating and Malaise in Microbusiness😆😆😆. I am self employed, but I am let’s say somewhat inconvenienced by MCAS compared to those who have it in all its glory. My job is physical though, so I have to be mindful. I’m thinking of adding on some services like animal sitting.
I am SO EXCITED ABOUT THIS and I want to read it alllllll!!! My first interests are dating while disabled and how to have a micro business and also how to be so darn smart and cute while your neck is falling off.
“I have no debt. None. Nada. Zip. (Despite paying $200k+ in medical bills out of pocket while never making more than about $40k in my pre-disability years and definitely going to New Zealand and Mexico instead of like, saving. No major inheritances or robberies. Didn’t have a partner supporting me financially, either.)”
👆this is the part that discredits you. try living in your situation but you’re jobless, carless, and basically homeless.
keep your toxic positivity to yourself. you just make the rest of us feel shittier.
Wait, what? Her posts are the opposite of toxic positivity. She isn't saying 'hey it's easy, just believe you can do it!' She's saying things are hard, here's where I'm at, and here's a metric ton of my tips so that hopefully they help you too.
Love this. Hmm … from my view, it looks like many in the chronic illness community lack strong, stable families of origin, including me. I’d love to read about how you built your community - and if less-than-ideal family of origin was an issue for you, how you overcame it to do that building work (ie, learned to choose friend prospects well).
I love this question, and I'd love to write more on it—thank you for asking. It is definitely a whole-ass post!
Can you write about responding to the neurological, brain concussion feeling, sensory sensitivity, cognitive dumbing shittery that happens?
I love your writing. I’m in bad shape too and have been a long time. Disability is isolating.
It IS. And the most tenacious, funny, resilient humans I know are sickies. Sending you well-wishes!
Samesies, xx
Looking forward to reading!
Malaise and a microbusiness sounds very interesting!
On the rollercoaster(s) of caregiving - because I'm on number 2, I've navigated and learnt how to live in a paradoxical space that not many people will get, but you've managed to sum up quite a lot of it here! What may seem contradictory to others feels like thriving on my own terms. Thanks for articulating yours, so I can ponder more on mine.
Really needed to stumble upon this today. Thank you
How do you all get through the moments when the relentlessness of chronic pain and disability brings you to your knees?!
Hoping this community of people can relate…it can all be overwhelming even when you have love and support. The grief of losing a life and learning to live anew is my greatest challenge. 5 years in and still stumbling…a lot!
Love your post Kira and looking forward to more discussion about all the things!!
This is absolutely the question, and while I don't have ALL the answers, I have thoughts. May I please answer this in an advice-style column in the future (can anonymize!)? It is a HUGE challenge.
I’m screeching at your suggestions Diseased Dating and Malaise in Microbusiness😆😆😆. I am self employed, but I am let’s say somewhat inconvenienced by MCAS compared to those who have it in all its glory. My job is physical though, so I have to be mindful. I’m thinking of adding on some services like animal sitting.
Also the new name is CHEF’S KISS (and by chef I mean you because you have to cook 100 times a day)
I am SO EXCITED ABOUT THIS and I want to read it alllllll!!! My first interests are dating while disabled and how to have a micro business and also how to be so darn smart and cute while your neck is falling off.
Can't wait to hear more!
“I have no debt. None. Nada. Zip. (Despite paying $200k+ in medical bills out of pocket while never making more than about $40k in my pre-disability years and definitely going to New Zealand and Mexico instead of like, saving. No major inheritances or robberies. Didn’t have a partner supporting me financially, either.)”
👆this is the part that discredits you. try living in your situation but you’re jobless, carless, and basically homeless.
keep your toxic positivity to yourself. you just make the rest of us feel shittier.
Wait, what? Her posts are the opposite of toxic positivity. She isn't saying 'hey it's easy, just believe you can do it!' She's saying things are hard, here's where I'm at, and here's a metric ton of my tips so that hopefully they help you too.