claracosmia
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Health updates & some realest real talk ever: TW crying
🕑 Added 2018-10-10 12:00:00 +0000 UTC (FYI there's a slightly cut down version in the video description bcs of char limits, but the kinda rambly version is here)This clip wasn’t really planned. Somehow found the courage, half delirious, to impromptu share this snippet. (I do have plans for a whole video series on my health issues & helpful tips I’ve discovered, but I’m not financially stable enough to make those types of videos right now, but hopefully soon). Disability isn't always inspiring, in reality it's this. 80% of the time.
For context I have a high pain tolerance (before this condition and more so after), attempting to move gets me to about an 8-10 on the pain scale during a flare and i can't do anything basically but swear sob, and then hope I don't get into a puke from too much pain loop/somehow manage sleep before the 40 awake hour mark
I've been trying to share more of my health issues, to help raise awareness and let others know they're not alone, over the last year but this was a MASSIVE leap outside my comfort zone. Normally I like to release uncomfortable things to a smaller, more close-nit group (like snapfam, or patreon fam), but I guess I knew if I didn't just jump in I wouldn't do it so... biggest platform first I guess haha - originally had just shared this video on my Instagram story, late last week but now that I'm a bit functional again I really needed to share it here (even though I'm sure a few of you already saw it)
I couldn't believe the response I got. Sometimes social media can feel akin to screaming your deepest insecurities into a void & sometimes connecting with one or two people. But within a few hours of my post I had hundreds of messages between comments & DMs. Ironically I didn't have the energy to reply for obvious reasons but just know that it meant so much to me, every single one. I read some out loud to my mum & I didn't even get half way through the first message before we were both crying I will be coming back to these message often, when I need a pick me up, here's the post:
https://www.instagram.com/p/BoS0CQdBz_m
So to my fellow spoonies, because there are so many more of you following me that I had any idea of:
- There is no right way to be broken/sick. Firstly, prioritize healthy mental habits over how you think you should behave, Esp if it's so you don't make other people uncomfortable. & count the freaking wins, go overboard, congratulate yourself for getting out of bed (or for resting when needed if you stayed in) You're very not alone, your pain (mental or physical) is valid/real, & I believe you. There's even a massive online disabled community I'm only just discovering, hashtags are an easy baby step to finding more like minded people.
- DO NOT compare yourself to people even if they're disabled, everyone's ability has zero todo with yours.
- & finally whether you see this as a burden, a battle, a non-consensual life buddy whatever, it's never black & white. If you give up for a second it's not all over. You can "give up" struggle for a time day & that doesn't mean you're giving up forever, even if you lose 'ground or progress you fought tooth & nail for, & it feels like everything was a waste-you're ever going backwards bcs you're still here today & today is forwards from yesterday
For my healthy peoples:
I wish I had the self care skills I have now, when I was a bit healthier (always been a spoonie, haven't always been disabled). The amount of torture I put myself through, pretty much needlessly, is nuts. I thought if I wasn't constantly pushing for 300% I might fail at something... Majority of my degree was a nightmare. For fucksake people it's okay to take a break, it's okay to say no, you don't have to prove yourself or do anything to make other people comfortable. Everyone is responsible for their reactions to situations in their life, it's not anyone else's issue.
And as for giving words of encouragement to chronically disabled/ill individuals, there are lots of videos on YouTube with what to say/not say to disabled folk (here’s one https://www.youtube.com/watch?v=7bg-Nq7_zFI ) but for me personally the main thing is just: listening with empathy, not sympathy, be up front, & if in doubt just ask 'is this okay to say’ etc.
No one likes to be a pity case haha, but you also don't have to beat around the bush. A response of “wow that sounds so awful” after a massive word vomit is super acceptable, I'm not expecting a solution. Just treat me like a human, don't suggest a cure, & believe me.
Also for instance there's a huge difference between I hope you get better soon & I hope you feel better soon. The first is like if you told someone with a terminal disease to get better, chronic illness isn't a transient illness, so even though I know the person means well it's easy to feel like... well why can't I get better? maybe I didn't try hard enough didn't stand on my head at the full moon & throw a raw egg north like Susie's cousin said she did & it cured her fibro so.... Yea
BUT the worst of my pain/symptoms isn't consistent. & most chronic illnesses have waveish patterns. Flares, or periods of worsened symptoms (brought on by something (like a food or wrong activity), or just completely random, also fun), & then a hopeful return to what that persons baseline is... THAT MEANS THE WORST DAYS ALWAYS. GO AWAY EVENTUALLY, a flare could be a day a month who knows, but they always ease up. So that's an easy way to help me when I'm in a flare, is reminding me that as much as this sucks & feels like l can never do anything again, they eventually pass.
as long as you mean well & you’re not asking me things like five seconds of Google can tell you, we good
Another way is to help dispel negative beliefs we can slip into easily, either by guessing common ones, or again, just asking. Like what is upsetting most to you about this, or what worsens anxiety, what worries you etc.
For me I am constantly battling feelings of guilt, uselessness, loneliness, Isolation, anxiety & any small comment that eases any of those is always appreciated (like hearing I made someone smile or their day better, I'm not alone, those kinds of things) & finally It's a fairly known faux pas (and tbh pretty Insulting) to try & suggest a cure or treatment randomly to someone with a chronic illness or disability (again, I know these come from a place of caring so don't feel bad if you've said it to me) I mean for many reasons, but mainly since it Implies that said person has not tried everything In their means to get themselves better.
Which obviously feels shitty, no yes I puke from pain on a weekly basis, am almost 30 but can't live alone, had to give up 95% of my passions & joy sources, & have an expensive degree I worked my ass off for gathering dust (next to 40k student debt) JUST FOR FUNSIES/alithesarcasmintheworld Now personally I'm not against this as much as other people with disability I've come across if It's approached the right way bcs like I dunno l'm desperate so If there's a tiny chance I can at least look into it but PLEASE be respectful. Best bet is to ask if they want suggestions. Or at the very least phrase it just as info eg "don't know if you were looking for suggestions or not but I had blah blah & tried blah blah & it did blah blah, not sure if it applies to your situation but just put it out there" etc
Comments
Sending you love my fellow spoonie, you're a warrior ❤
Thank you for sharing. I care for a wife with fibro, and I have a fair share of friends with EDS-hypermobile. Any care and self-care tips are much appreciated!
