#I feel stupid for buying a festival badge I've barely used at this point

[cookinguptales]

ooooh love that 4 am chronic illness venting

sometimes I think the worst part about having a chronic illness is accepting that, in many ways, it will never be as good as it is now. I can be in awful pain, I can be exhausted, I can be barely functional at work and I still know things are only going to get worse. like. god. if I'm this bad at 34 how the fuck am I going to be when I'm 50?

I couldn't even get through one film festival. my hormones have been acting up since I got back to Philly, probably brought on by all the travel and stress about work, and I spent a solid two weeks with my ribs and hips dislocating and the first three days at the festival were just me being in so much pain that I would go to the restroom and cry between movies.

that's what having a good time apparently looks like these days!

and then my ribs start calming down just in time for a heat wave. 85 degrees. god knows I can't go out in that anymore, because this body can't do fucking anything right. okay, fine, whatever. then my period finally comes a week early, seems about par for the course with whatever the fuck is going on this month, and the endometriosis is so bad that I could barely get out of bed yesterday, much less make it to center city.

so in the end, I have so far made it to 4 of the 10 days of the festival, and I don't have much hope about the last two. I have to come to terms with the fact, now, that maybe I can't even handle film festivals anymore. I can't handle going into the city and sitting in a dark room for a week now???

I feel like I've wasted all this money on something I was really excited about, because I used to really love going to the film festival. but have we devolved to the point where I can't even do this anymore?

like I know that this month is irregular, for several reasons, but I can never depend on a month to be regular anymore! I can't plan a trip three months in advance because I don't even know how I'm going to be three days in advance anymore! do I just give up on making plans in the future? do I give up on looking forward to fucking anything anymore?

and I know that the mood swings are part and parcel of having pmdd (I had ~three~ panic attacks yesterday) but also like. god. at a certain point how can you handle balancing work and trying to have fun while your rib is literally sticking out of your fucking back. you can feel it! when you touch! my back!

and at what point does a mental breakdown become inevitable, dealing with that kind of pain? when you're also dealing with about five different work deadlines and you still want to make art but you have no time for it and when you finally have time, nothing you write is any good.

all that and I'm supposed to have fun, too? I feel like every time I carve out the least little bit of fun for myself this october, the month I am supposed to enjoy the most, I spend the next three days paying for it.

I feel like I just. I'm at the point now where I physically cannot leave the house ten days in a row anymore. I can barely handle three days in a row. I'm not even doing anything. I'm just sitting there, but apparently the act of taking a bus to a building and sitting in that building is too much for me now.

I know I've been kind of irritating to be around for the past few weeks, but I am just exhausted. and today I'm finally clearing the joint pain, I'm finally clearing the nausea and inability to eat (which of course makes me sicker), and I'm just. I'm so fucking tired. I can't even enjoy not being in (as much) pain for a few days.

and of course trying to scrape all this together, I haven't been able to clean the house, so it looks like shit and I feel like shit about that, too.

I don't know. some days when you have an incurable illness that you know is just going to get worse over time it's just. I don't know. it's hard to have any hope at all. I feel like I'm going to die alone in a filthy house because I don't have the energy to be a real person anymore.

like I go visit my parents and I'm always so glad to get home because I love them but I also need my space but there's always that realization that like. oh right, living alone is really fucking hard. some days I can barely even feed myself. I feel so useless.

I know that withdrawing from my friends is probably the opposite of what I should be doing right now, but it's also. I don't know, sometimes I feel almost ashamed to let them see me when I can't even pretend that I have my life together. like usually I can at least pretend that my body isn't weighing me down too much. letting people see me when it's very, very clear that I am hanging on by a thread feels far too vulnerable.

I guess some piece of me feels like if I let people see the awful underbelly of what it's like to actually be disabled, they'll be disgusted with me. like. sometimes disability is just we have to walk a little more slowly at the museum or I can only eat certain foods when we go out or I get way too chatty because I'm exhausted and I lose my filter when I'm exhausted. but sometimes disability is not showering for a week and a living room that's covered in garbage and unpacked suitcases and sitting in your bed and crying for hours. like. there's nothing glamorous about it.

I feel like I have to work so hard and pretend so much to even reach "tolerable" to other people but I'm not even tolerable to myself right now. even on my best days, when I can go out and hang out with people and pretend that I'm okay, I know that I will be going home to a messy house that I will never invite people to because it's embarrassing to admit that I live like that, not because I want to, but because I have to.

but I can't even do that anymore, I can't even go out for a few hours and pretend that I'm normal and well-adjusted and not at all a burden to my friends and my family and my community.

I don't know. I don't know. I'll be okay. I always end up okay. but I feel like having a chronic illness means mourning a thousand different opportunities you had to give up because you were home puking or whatever, and right now I'm mourning a film festival.

or at least the me that could go to film festivals.