Category Health

6 posts

The Feelings Part 3

I’m trying to see this period of my life as a good thing – an opportunity to unpack the trauma I’ve been avoiding and do the healing I need to do. I want to be able to take this mystery condition that I still have zero answers to in stride and not be angry and grumpy and depressed about it, but I am not there yet.

So much of my day to day is currently consumed by pain and fatigue, it’s impossible not to get upset and discouraged about it sometimes. But I am also learning some good things, like:

  • I am extremely loved and cared for by people I’ve never met (thank you, holy shit <3)
  • I am really good at choosing my family and have a strong community
  • I have the capacity to be more present with people I care about

I feel guilty and self-conscious about being so open with the giant trigger that is living my life with a ghost disorder that also constantly reopens trauma. I feel guilty for making the decision to step back instead of plowing through, because on some level I still feel like I deserve to suffer and actively choosing against that feels like blasphemy.

So much of my CPTSD is manifesting in my body and my instinct is to take all of that angst out on myself instead of understanding that none of this is my fault. I worry that by being open about the infinite layers of pain that come in waves is too much and that I’ll just wind up drowning people in my whirlpool of depression. But then people reach out to me to say that my candidness is helpful. My community immediately reminds me that I don’t deserve suffering and taking care of myself is the right thing to do.

So I’m trying to keep that perspective: I deserve to take the time to heal and get better, and doing so doesn’t make me an awful terrible selfish person (fundamentalism is still clacking around).

I’m discovering a lot of very specific traumas that this whole illness is sitting on: There’s medical neglect and anxiety, and then there’s the deep seated fears that resting will get me in trouble, that I am a nuisance if I can’t do what I usually can, that I did something to deserve this, and that I’m useless because of it. Doing The Work of trying to heal 18 years of bad experiences while sick is exhausting, but I’m trying. I think in some slow small ways I’m succeeding.

I’m still getting eaten alive by brainfog and anxiety and the grief that accompanies realizing that I really am disabled and I really do need help, but I’m Doing the Work, and I’m asking for help, and even on my worst days (like today when nothing touches the pain) I can tell that I am loved and I will eventually be okay. It might be different, it’ll take me a while to get there, but I can at least imagine getting there, and that’s progress.

The Feelings Part 2

I’m feeling many ways about my disabling illness. There’s a good bit of anger, a lot of exhaustion, 6 feet of grief, and a lot of anxiety around whether or not I’ll get better.

There’s a part of me that has resigned itself to this new normal and a part of me that really wants to fight it. But the biggest part of this equation is my complete exhaustion.

Cortisol labs were inconclusive so I have to do the entire test again and follow it with an 8am blood draw to confirm whatever the results are from the spit test.

My doctor did say that it seems like I have IBS (shocking I know) so she gave me some Omeprazole and Dicyclomine to help with digestion (and I have since eaten 3 meals without feeling nauseated!) and Banophen so I can sleep. I’m hoping with rest and the ability to digest food my body will calm down a minute but I’m not sure. Everything went extremely downhill after my endoscopies and I don’t think my body has recovered from that trauma.


I still feel very lost. I’m trying to focus on making art because it helps, but I miss school, I miss all the things I was doing on campus. Being relegated to the couch all day because I ran an errand the day before is really demoralizing and upsetting.

I’m very sad because I feel like I’m missing out on so many things. I feel like I’m letting people down when I flake because my body just decided to quit at 4pm. I’m sad I can’t be doing all the things in all the ways I want to be. I’m sad that this is so hard and it takes such a toll – not just on me, but on everyone I care about. I wish it didn’t. I wish I could live my normal life but instead I don’t know that I will ever get that back and it’s terrifying. The FOMO is hard and real and I don’t really know how to cope with it.

Having an invisible disability on public transit is really hard. I know I look healthy and young and spry, so I don’t sit down when I should because I don’t want to deal with people judging me, despite the pain. I don’t want to ask for help because I look like I shouldn’t need it. I still try to do as much as I can by myself because I don’t want to believe I’m not well. Which is really counterproductive.

I realize that I need help if I’m going to make it through the recovery process without drowning in debt or dying from financial stress, because being sick like this makes looking for a job completely infeasible.

I live off my patreon, the podcast and a side gig which totals to about $900/mo….in the most expensive part of the country. 75% of my income goes to credit card bills and the rest is divvied up between transit passes and groceries. There are supplies that I need to make cooking and baking (mostly bread and hummus) possible so I don’t have to take a bus to buy a very small very expensive loaf of gluten free bread, but I can’t afford those either.

If you’re interested in helping me survive this terrifying journey there are a bunch of different ways to throw money at me and get varying levels of art in return (along with my undying gratitude):

  • Support me on patreon! Patrons get access to download the files and behind-the-scenes updates – there’s currently an exclusive video of me reciting this poem. If I can reach $1k/mo on Patreon I will be able to sleep better at night and not feel like I should skip eating to save money.
  • I listed some of my paintings for sale on Etsy
  • I have an amazon wishlist of supplies that would make my day-to-day easier and enjoyable.
  • I can be cashed or venmo’d a cup of coffee or gluten-free groceries.
  • If you need a professional cat-herder to help you organize remotely or set you up with WordPress, I’m also looking for work.

My plan right now is to lean into art and let that bring me life while I continue to play this constant testing and waiting game of 3rd dimensional chess.

The Feelings Part 1

Shit has been rough.

Up until last week I was able to use school as a distraction from the mystery that is rampaging my body. I sent out letters to everyone over last weekend saying I’m dropping out but staying around until the end of the month to tie up all the loose ends. I have since lost most of my fucks for meetings which is both good and bad. Good because it keeps us moving along and productive, bad because I forget that this is entirely new territory for the rest of the student cabinet and I want to be much more patient than I feel like I am. Although, people have been thanking me later for my tension diffusion skills so maybe I’m just really hard on myself.

I am really hard on myself. I’m even harder on myself now that I’ve dropped out of school, as if dropping out somehow nullifies the health issues that required this decision in the first place. I’m not instantaneously better after removing the stress of school (which is obviously a ridiculous expectation), and I feel like I’m getting worse. But is it worse because it’s worse or worse because I’m finally staring at it?

I think some of this is that since since I’ve removed my consuming/enabling distraction the only option left is to look this problem in the face and confront how bad it really is.

I feel like I am losing so much that is important to me. Even though it’s my decision, it doesn’t feel like a choice (which in a way is its own progress). I’m so tired of fighting for e v e r y t h i n g only to have it fall apart.

I’m losing my memory, and it’s gaslighting. I can’t remember a story I heard, or a story I told 10 minutes ago. I can’t remember words or how to give directions clearly, I can’t remember where I am in space or what I was going to do 10 seconds ago. I’ve always had this occasionally, but it’s been really bad lately. I’m frustrated with myself because I see these things happening and I am unable to stop it. I can’t remember the word that’s on the tip of my tongue, my body and my brain are so disconnected right now.

I haven’t slept well in ages, which is likely a contributing factor to the memory and spatial reasoning. I’ve also been in a CPTSD flare for months that is really hard to come out of, because the dietary restrictions I have now taste like the cult. I want to take the test for a motorcycle permit but I don’t feel like I can rely on my memory for a quiz right now. That’s how deep in brainfog and fatigue I am.

Meanwhile, every single test we’ve run so far has come back normal. I have lovely, photogenic, nonproblematic organs that literally cannot digest food without immediately making me nauseated if I forget to take an enzyme.

As much as I hate it, my body is at least proving dropping out so I can navigate this shit was the right call. I have so much anxiety about all of this too, but that’s another post entirely.

Pause

I sent all the emails on Friday that told everyone who needed to be told that I’m dropping out for my health.

I’m too sick to be in school and on campus so I’m dropping out. I have been stuck in a shame fueled depression since I made this decision even though I know it’s the right one. School has been so hard but also so good. I miss it and I feel lost. I have other projects but my depression ate my motivation and I need it back.

Most of last week I spent trying to come to grips with it, and talk about it in a way that wasn’t utterly depressing. Everyone at school has been super supportive and not angry at all, which is the anxiety that was eating me alive. But I’m still really sad and really devastated about it.

I don’t have the energy to get into those feelings right now, but the words will come soon.

Semester No. 5

My semester begins tomorrow. I’m very anxious. My body has been tense all day…all week, really. I’m not anxious about my classes – I’ve re-evaluated them thrice now and I’ve taken my health and spoons into account so I’m only doing one in-person class (US Government), and two online classes (English 5, and Cultural Geography) in addition to my Student Government & Laney Queers organizing and my independent study (which is essentially writing down what I learn in the student senate).

I’m anxious because this is the first week of school and on Wednesday I get snake cameras and sedation instead of doing fun Welcome Week activities, on Tuesday I meet with my department chair and have my first class while on a liquid-only-diet and then get to drink the colon cleanse “juice”.

I think I’m more irritated that my first week as a senator is going to be interrupted by being sick and there’s nothing I can do about it than anything else. I’m realizing a lot of my life is going to continue to be interrupted by being sick and there’s nothing I can do about it and it’s really just…. quietly devastating.

That knowledge hangs on me like a heavy jacket twice my size. It’s with me every moment of the day. It envelops me when I struggle to put together a meal because I can’t get out of this fatigue and brain fog regardless of how long I close my eyes. I’m quietly haunted by my own ghost that I can’t figure out how to release.

I don’t know how I’m going to get through the next semester. I don’t know if my body will hold together or if I’ll have to drop out. Everything feels so precarious and I’m so so exhausted.

So tonight I managed to make myself some Gluten-Free low-ish-fodmap peanut butter energy bites so I can at least have something to munch on during the days I can eat solid food. Doing post colonoscopy Kieryn a solid.

ha.

more misc

It’s snowing, I’m in a sweater, leggings, fluffy socks, and a warm blanket and I’m still cold. I braved the weather to get food.
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I started a fairy porn tumblr and theoretically increased the amount of comics I draw per week.
I had a lot of unexpected social but ended up getting rid of the PVC pipe from our greenscreen project/holder thing, finally. Apparently people LOVE free PVC pipe.
I moved the xbox back into my office and realized it hates me trying to play multiplayer ME3 in a party, but it’s still great for watching Futurama.
I was a lot of up and down this week, but that was okay. I also did a LOT of little things – taking things to the thrift store, recycling, etc…
Playing more minecraft and streamed some of it. I even figured out how to breed chickens and pigs.
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I’m waiting anxiously until I can schedule my last HPV shot at planned parenthood, and then I will be IMMUNE. I will also go to the DMV and renew my license and take a new picture where I don’t look like a homeschooler who has no idea what to do with their hair.
Need to remember to vote on Tuesday.
I realized, now that I’m actually old enough to vote myself, get-out-the-vote campaigns don’t matter as much to me as they used to, which I think is weird, but I guess it’s because I know I’m going to vote, and as long as I can vote I’m not concerned about getting other people to vote on my behalf.
I also got some rum and whiskey on Halloween (and also I got candy because I wore my fox costume to run errands over lunch and it was awesome), which means I’ll have something to help me watch the election results.
Mostly I’m writing this boring ramblyness to keep myself awake, but I’m hitting publish, so it only realllly worked for like 15 minutes 😛