#cci

[nightingales-cottage]

genuine question for my chronically ill friends - how do y'all cope with medical burnout when you quite literally don't have the choice but to keep going to appointments and take your meds and do your feeds etc,?

i just want to cry, i am beyond tired, i don't want to book and go to my appointments, help.

how do you cope?!

[unstablemotions]

Help Save My Cousin's Life 💜

My 25 y/o cousin Line, known as @nebulow online, needs for surgery for Craniocervical Instability (CCI). This is her last resort as she's been deteriorating fast. She's also diagnosed with Congenital Muscular Dystrophy (CMD), which will kill her if her CCI isn't treated.

Here's her Fundraiser

Any amount helps!! If you can't donate, just reblogging/liking this is a help 💜

[mushroom-music]

hello fellow cripplepunk peeps! I’ve been having a bit of a bad time lately with symptoms that are new to me (neck pain in multiple places, bad migraines, dizziness, random weakness, etc) . upon doing some further research, I think it might be craniocervical instability, given that many of the symptoms match and I am also hypermobile (so higher risk).

I’d like to pose this to a doctor when I go to get it checked out, but I’ve never posed my own ideas before, I’ve always went with what they told me (at least until the next one had a different diagnosis lol). any tips on how to put this idea on the table without seeming uneducated? I’ve really done a lot of research and I don’t wanna be shut down, esp if this could be the cause of the increased migraine frequency I’ve been experiencing. If any people with diagnosed CCI could give their input on what they think it is or how to deal with doctors not taking you seriously, that’d be greatly appreciated!!

[virtualmosshroom]

the unique experience of having to hold the back of your head when you’re finishing a drink bc you have zero neck stability and forgot to grab a straw

[five-thousand-loaves-of-bread]

anyone with cervical spine issues when neck have extra symptoms (hurt dizzy etc), often also suddenly get. very sleepy tired

can’t stop yawn n struggle stay awake n need go bed n sleep

even if got good night sleep

like is that combo A Thing

specifically not just brain fog - brain fog happen but specifically talking about so sleepy need sleep right now

[the-cryptid-next-door]

I have *slathered* my neck and lower back in CBD balm to find the single iota of comfort I can put my grubby little mitts on. I am clinging to it for dear life and hoping that it will be the gateway to rest.

So far, I've been so fuckin' fitful my cat is mad I'm not following the protocol of lay down>close eyes> don't move for hours. I have been flipping like a pancake. Send more CBD balm and a little treato. I'm being so brave 🙃✨️

[nightingales-cottage]

Neurologist today, i am STRESSED

[thelastwhimzy]

since my SMOs got repaired this week, I wanted to show y'all how much they helped my walking! here's a video, is going to post it and add text but tiktok is going down in a few hours so I'll probably post and edit it on insta instead:

it's not a super obvious difference and I think that's part of why it kept getting missed but I found out that I probably have foot drop! I didn't think that I had it before because I thought that it meant not being able to lift your foot at all but I guess there's varying degrees depending on the person / severity. I'm not sure how noticeable it is, but I definitely see it - in the second clip, I am wearing my regular shoes and when I step there's a moment where don't lift my foot up correctly. I guess it's also called toe walking? it's common in autism and I always thought that meant being on your tippy toes but it does not LOL

but yeah I'm pretty sure it's because of neuropathy / spinal issues but there is a possibility that it's something I've dealt with my whole life. I always thought that the reason why it would drop down like that was because I was used to pointing my toes and that since I can a manually lift my foot up if I try that it's not an issue 😭 after a day of walking with the SMOs on I can see a huge difference in my stability! very happy about it TBH