Gene

she/him chronic illness focused sideblog :}

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Brief intro post:

I'm Gene, I use she/him or he/her pronouns and this is my chronic illness specific sideblog. I won't be sharing my main blog here.

I have a variety of neurological, physical, and psychological diagnoses and I'm an ambulatory mobility aid user as well as a part time student. I live in the middle of nowhere midwest and volunteer for my local animal shelter when my body allows.

I don't really use this account to interact with people, and I have no specific DNI beyond the obvious (bigots, TERFs, etc.). Also radqueers and transID people, please. I don't want to dig into that here, and it all makes me insanely uncomfortable.

I'm okay with dms, but I may not respond 👍

If you think you somehow know me IRL, no you don't.

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A while ago my bsf had a health scare and isnf it messed up and awful that I was almost disappointed when nothing ended up being wrong??? Idk for the week where he was stressed about it it felt like I finally related to him in a way I never have and then he turned out to be fine where I didn't and it went back to normal and I was still sick and he was fine.

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My mental state is very fragile at the moment and I'm doing far worse than everyone around me thinks but I only have to hold out for two more weeks until my doctors appointment. Then, I'll be allowed to be visibly unwell.

My therapist told me she thinks my outlook on my life is bleak and pessimistic. But I don't know how I'm supposed to be any different when chronic illness has me constantly braced for something new and bad to happen or develop. I'm always waiting for the next thing I enjoy to be taken from me by my physical health.

I'm afraid that the second I let myself be hopeful I'll have that hope crushed just like it has been every time in the past when it comes to my physical health. I've only ever seen myself get worse physically, why would I expect my health to get better? I don't even know where that would begin or if it's possible.

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Got a detachable shower head. Quality of life improved.

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I wasn't ill only a few years ago (or it wasn't bad enough for me to remember it being there), so I distinctly remember being able to do certain things and enjoying doing those things. Then I try to do them again and send myself into a crash or pain flare and realize how much this illness has taken from me as I've progressively gotten worse.

A few months ago I went ice skating with my best friend because I remember doing that back in like 2022 and having fun. We ended up leaving after 45 minutes because I was bright red and dripping sweat and visibly trembling and felt extremely ill and dizzy. That was not a good night.

He's great, he sat with me in the lobby, got me hydrated, and ate candy with me while I cried, but it like a kick in the teeth. It's one thing when it effects my daily life, another when I have to grieve the fact it also effects something as simple as quality time with my loved ones.

It still feels like a trivial thing to be so upset by. It could be a lot worse, I know this, but I can't help being upset.

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I hate those 'TMI' type of symptoms that I feel so humiliated by I don't even feel comfortable admitting them to medical professionals. I feel so much shame constantly. Stuff like incontinence.

It makes me scared to go in public sometimes and is genuinely so viscerally upsetting and humiliating for me on days when I deal with it.

Like my best friend is the most supportive person I know, and only recently did I admit that those symptoms were something I struggled with and needed to vent about.

I wish people were nicer as a society and more sensitive about these things and talked about them more in relation to disability. I've felt extremely alone in this sort of struggle for so long now, especially being young.

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New fucking symptoms gotta hit at the worst damn times. Had a hell of a time these last few months with new pain showing up and now we've got fuckass miscellaneous allergies and itching. I'd throw things if I weren't stuck bedrotting after my little stunt today.

Its not fair did I not already have enough going on? And I'm not even possibly meeting with a specialist to MAYBE get diagnosed with something for another month. If I didn't have that appointment to look forward to I'd have done something stupid by now.

Fuck dude let me out of here I'm in health purgatory.

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Venting, sorry.

Self sabotage when it comes to my disability is so hard to overcome because what's harmful to me looks like what productivity looks like for abled people.

I spent an extra hour out of the house today. People congratulate me on this as if it's a positive, and I guess to them it is. I'm being useful.

But in reality I'm fully self sabotaging by purposefully doing things that can/will trigger a pain flare or cfs crash. I'm not sure why I do this, but I've done behaviors like this for years now, and theyre only encouraged by the able bodied people around me.

I'm probably going to be in horrible pain tonight and have to stay home tomorrow to recover. And when I'm inevitably in pain, I'll likely stall taking painkillers and drag out the experience far longer than necessary.

But as far as an outsider can see, today was a step in the right direction. I need to unpack this with my therapist when I see her tomorrow.

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Sometimes I catch myself getting really spiteful and resentful of people around me who participate in physical sports and hobbies.

And then I have to sit down and remind myself that their life experience is very different from mine and sitting at home hating them for being able to do things I can't does me no good but GOD DAMN IT I feel like an angry old man shaking his fist at the youth hanging out on his front lawn.

Its hard to not get caught up in fomo or jealousy when I'm reminded by my peers just how much I'm missing out on when I'm basically a highschool dropout, haven't had a normal classroom experience since early middle school, and can't even fathom being able to do any sort of sport like everyone around me seems to be doing.

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No tell me why able bodied people like to mansplain to me why the word 'retard' or 'cripple' isn't offensive like be SO fr how can you sit here. Look me in the eye. And try to convince ME that me, someone disabled, telling you not to say that shit is somehow wrong on my end 😭

Genuinely had my younger brother defend his usage of the r slur by saying 'its a medical term' and I really, really wanted to throw my head into a wall.

For the record this isn't about disabled people saying those words, its about neurotypical/able bodied people saying those words. I have my own opinions on both of those words, but thats irrelevant here cause I dont see any utility in infighting when the vast majority of people using those words can't even claim to be reclaiming them.

God i dream of having as much confidence as bigots seem to have Jesus christ the lack of self awareness is astounding.

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I had an abled-bodied friend straight up tell me cripple isn’t a slur even after I showed them how it was. 💀

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I hate when mfs think marginalized people using/reclaiming a word in reference to themselves is an invitation for them to also start saying it

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No tell me why able bodied people like to mansplain to me why the word 'retard' or 'cripple' isn't offensive like be SO fr how can you sit here. Look me in the eye. And try to convince ME that me, someone disabled, telling you not to say that shit is somehow wrong on my end 😭

Genuinely had my younger brother defend his usage of the r slur by saying 'its a medical term' and I really, really wanted to throw my head into a wall.

For the record this isn't about disabled people saying those words, its about neurotypical/able bodied people saying those words. I have my own opinions on both of those words, but thats irrelevant here cause I dont see any utility in infighting when the vast majority of people using those words can't even claim to be reclaiming them.

God i dream of having as much confidence as bigots seem to have Jesus christ the lack of self awareness is astounding.

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My cane clip for my belt arrived!! Gonna be super helpful for when im volunteering and need to set down my cane a lot but definitely still need it on hand.

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Ive kinda been a depressed sack of shit lately and I feel like I must be insufferable to be around when I'm like this, you know?

Like all my support people are so lovely and I love them so dearly but how they find my company enjoyable when I'm miserable and in pain and whining about it constantly is beyond me. I feel bad about it but some days I genuinely can't help it when I'm upset and fatigued.

Anyway um shout out my best friend for putting up with me as my physical condition has gotten worse over the last few years. He's been my rock. I don't know if I'd be able to do it if I were him, but I'm grateful for him. I genuinely might not be here if he weren't there for me even when I have flare ups and crashes.

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I just used a shower chair for the first time and. Genuinely life changing.

The reality of physical disability when it comes to showering for me was that I couldn't remember the last time I was able to fully wash my body. Showers have been a 'get in, do the bare minimum, get out and let my legs rest for hours afterwards' kind of thing for the last couple years. I've felt gross about it for just as long, but with how easily I tire myself out I just didn't have the spoons to do more without taking myself out for the day.

With the shower chair I was finally able to like.. fully take care of myself. Use body wash, scrub my skin without exhausting myself, feel clean, and its starting to dawn on me how much I was struggling even just a week ago.

And my legs don't ache at the end. Shower chairs are magical apparently. Still dont feel great about the fact that I need one, but holy shit this is so much easier than what I was making myself go through before.

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Im realizing how much suffering I just. Don't HAVE to experience that I thought was a necessary evil and now forcing myself to push through that suffering feels very unappealing.

Like just a week ago powering through the exhaustion and pain of going up the stairs felt empowering. Like something to proud of. And now it just kind of hurts and not much else because I'm realizing my pain isn't really necessary.

Using a cane these past few days has made me feel like a feral kitten eating fancy feast for the first time and it's kind of shaking up my world view.

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My best friend helped me add stickers to my new cane <333 I really enjoy the raptor on the handle.

I'm planning to customize my own wrist strap thingy cause the one the cane came with isn't working for me. I'm thinking I'll use like... a friendship bracelet pattern for it.

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I feel physically sick I think my mom is embarrassed about me using a cane around her in public. And it hurts. Really bad.

Like I get it shes scared of social repercussions considering I am (from an outside perspective at least) able bodied most of the time but GOD judgement from her however well meaning hurts.

Um I need advice on how to talk to her about this. Because I'm genuinely crying and I feel awful but I know she's well meaning. It hurts extra cause I think she's got the same internalized ableism that I've been grappling with internally.