blog

07.10.24

sleep on it


tw/cw: chronic illness, depression

Hi, there isn’t really a message to this, I’m kinda coping since that’s all I can do. A bit of an update? I’ve been feeling blocked with making things because the most important things I’ve been thinking about lately aren’t wanting for solidification in writing. Think I need to put it down anyway.

Something I was struggling to reach for in my [disability and sense of self] blog post was the idea that things being really hard makes believing you can do them harder. The perception of self builds to one able to achieve less. And the world grows smaller, and the allure of giving up and resigning to the worst pulls. I have been feeling this very much lately. Depression is warm, a cradle that unravels thread on belief and gently whispers lullabies of the easiest path. You know, give up, sleep forever. Having chronic illness in the picture complicates what recovery looks like. It and depression are two separate things, but they get along well.

I feel like I’m being pulled in too many directions. The fatigue is killing me trying to live with what I feel is a reasonable daily load. It’s not something I can just ignore anymore. Instead I need to rest, adjust my expectations, get in tune with what a new capacity looks like. Of course meeting this is something that varies daily with management, but rest or no, enjoying living has been rough. Without enough rest: I don’t feel energised enough to enjoy or focus on anything more than very little. When it comes to getting all my needs met/meeting needs - physically, emotionally, socially, for community - it’s so hard to be there for it. With rest: I need to be drastically reducing the scope for what I’m able to do without feeling like shit every day. And I can’t want the same things. The fatigue doesn’t always clear with rest. I’ve been getting a few hours after I wake up before my eyelids get heavy.

Depression, hey? Getting out of it’s a slog, but I’m familiar with the protocol. Try lower the bar for what a win looks like and take joy in the little things. Anything to fight against sinking into the Sleep Forever tar-pit is a win. Unfortunately, I have the Sleep A Fuckton Disease. I have been doing so well this year and it feels like it’s falling apart. [The realisation(requirement?) that I can’t exist in the world the way I want clashes with the need to cling onto any strand of want to stay afloat.] I’m trying to keep my head above water and I feel like I’m being met with more water.

The obvious, hard answer, is to keep trying regardless. I’ve always believed the beautiful and unavoidable truth of mortality asks only that one thing. To try the best you can, you only get one go, etc. etc.
It’s hard. What does my best look like? Whatever my best is at the moment doesn’t feel great. I feel like all I’m left to do is navigate the compromise. Or, keep pushing despite my capacity and tolerance giving way for the sake of achieving something greater than fatigue. Neither are ideal. It’s the grief. I’m grieving that this may just be forever. That it’s so hard!!!! That happiness is hard to find. If things do improve, eventually, if I’ll be able to fill to the hole where my expectations used to be.
I just want to communicate and understand and be understood and relax and be and I can’t be anything more than breathing right now and it hurts. I’m grumpy and brain fogged so often! I don’t want that to be who I am!! Especially around my loved ones. I don’t feel I’m able to give the energy the love deserves right now and I can feel myself shrivelling up in the sun.

The best thing, (or worst thing, depending on how you look at it,) is that I still remember what being okay is like. I can see it some days, for hours at a time, before getting whipped back around from fatigue/other symptoms. I can see it and it’s beautiful and I want to be there for it. It’s muddied, but it’s there. I’m learning what rest looks like. I’m trying to put my energy into things into the world around me. I walked home the other day in a flash thunderstorm, in the hail, with my purse and laptop bag and a bag of groceries and a pack of toilet paper and I was drenched and I couldn’t stop laughing. I got home, slogged all my stuff down on the floor, shed my clothes (drenched), and slumped onto the couch. Even though it’s hard to see, I want to keep going, I don’t want to die.