ghostofazebra

[ghostofazebra]

So apparently mentally planning out conversations for doctor’s appointments you haven’t even managed to make yet isn’t normal? wild

[ghostofazebra]

Journal entry 5/29/25

Sleep is a temptress dressed in black

I chase her nightly, daily, ceaselessly

She shows me naught but her turned back

As internal alarms blare through my body

Flashing with the brightest colors and loudest sounds

Sharp, bright alarms jolt my eyes open

Dull, constant ones pry my lids from her visage

They pound my skull like a drummer’s weapon

They echo to my toes like a runner’s message

Stopping at every joint they can find a recipient in along the way

Sleep, you wily fox, you gothic venus

you are a rainbow, beautiful and impossibly far

The aching keeps the miles between us

The pain keeps you from my arms

Must you court all but me and leave only sorrow for company?

[ghostofazebra]

Journal Entry 5/15/25

I’ve been awake for about half an hour. I haven’t gotten out of bed yet, but it feels like things are good today. My joint pain is there, but on the lower end of the scale. I feel like I could get up and actually do a few things before exhaustion sets in again. Days like these are rare, and honestly I’ve come to fear them. But all things considered, it’ll make work way more bearable than usual, and if i’m lucky it’ll hold until I’m out of work and I’ll be able to tackle a fraction of the insurmountable amount of laundry I have to do, or even take a shower. I’m so considering shaving my hair off at this point because it would be so much easier to shower, but I would definitely look like an egg. Getting back on topic, I wish I could use my good days for things that I want to do and usually can’t quite manage, but necessities come first. I just hope that the post-good day crash is short.

[ghostofazebra]

i repeat, how far have we gotten? please?

so how far has humanity come towards being able to transfer human consciousness into a robot body? because i could really use that right about now

[ghostofazebra]

Journal entry 1/18/25

I’m sure plenty of other people here know exactly the feeling I’ve been having, but I don’t know a word for it.

There’s a kind of bitter sweetness that comes with every bit of joy nowadays. I’m in my internship for the career I want to go into, but I don’t see anyone else who is disabled in the field. Everything is really inaccessible if I were to get mobility aids, and the way we’re evaluated discriminates in non-obvious ways if I were to accommodate myself. I’m left knowing that I only have a year before I could go into this career I love and desperately want, and wondering how long I’ll have before I physically can’t do it anymore. Will I even be able to make it through the year of internship? I don’t know.

All in all, there’s a kind of constant grief that comes with this all, mourning things that cannot be, or a dream, or the future. Knowing that the person I grew up thinking I would become is so far out of reach that he may as well be on the moon. I’m tired of grieving, but truly I think there are two constants that I have to look forward to; grief and pain.

Sorry to be such a pessimist, I woke up at 2:30am on Thursday in such pain that my legs couldn’t support me and I spent the time waiting for pain meds to kick in praying to any and every god I could think of that I would be able to function and mask because I had to leave for my internship 4 hours later and then the rest of those 4 hours trying to distract myself from the pain enough to get a little bit more sleep. There are many things I probably should be doing, like trying to find more doctors since my current ones told me they couldn’t do anything more for me or finding a backup career for once my conditions progress further, but right now all I want is to cry and sleep.

To all my fellow disabled folk, wishing you a low-symptom day and some hope for the future

[ghostofazebra]

Journal Entry 12/27/24

Haven’t done one of these since i made this page, but my body decided that breaks are for losers and I don’t have access to even the shittiest of counselors to help me sort my thoughts about it until the semester starts up again, so here I write. I should probably do it more often anyway, both to help myself process and as a record of symptoms.

Anyway, i just got out of the worst flare I’ve had in my life so far. I honestly wasn’t sure if something new and life threatening was happening or what, but I didn’t want to scare my family or ruin christmas, so I went about wrapping gifts even though the world felt fake and did christmas morning in a complete haze. If it weren’t for the fact that I haven’t put the things away yet, I would have no clue what I received. I barely slept for three days, finally was able to eat my first full meal again tonight, and am still getting flash headaches whenever I stand and struggling to breathe a bit. I don’t know if these are just remnants of the flare, because I don’t usually push myself quite so far past my limits as I did so things don’t usually last this long, or if this is going to be where the new baseline settles. But now I’m getting what seems to be random hives too? I don’t know, all I do know is that each day as one symptom improves something new is showing up.

My cardiologist says he can’t help me any further, my rheumatologist doesn’t accept my insurance anymore, and no one seems keen to lead me toward where to find help. Everything is “learn to manage”, but beyond what I’m already doing no one is telling me how and I’m lost. I’m lost and scared and I know I’m 22 but I just want the adults to fix it because it hurts. I feel like a child, whining because i’m cranky and tired and everything hurts, but what is an adult if not a child with more life experience?

Tonight’s ramble was a confusing one I’m sure, because I’m not entirely sure what I wrote here, but I’m going to bed before my C2 vertebrae decides to shift out of place or something equally as dramatic and out-of-left-field

[ghostofazebra]

Journal Entry 10/1/24

I had to ask my professor to let me not stand/walk during the standing/walking activities last night. I hadn’t known at first that this class would have so many activities like that, it seemed like a lecture-based course. After the last two classes where I’ve left nearly crying from the pain and struggling to get back to my car, though, I figured it was time to ask for an accommodation.

It was so freakin scary actually, I hadn’t realized it would be so scary to ask for that bit of allowance. Luckily I’ve learned to stay after class on the first day and let my professors know about the health issues i’ve been dealing with because it can cause excess absences, but I’ve never had to ask for anything beyond the understanding that I may have to miss unexpectedly before last night. As walking and standing are getting harder though, classes too have been getting harder.

I don’t have accommodations set up with the university yet or anything because the Office for Accommodations is on the main campus which is half the state away and no one in this damned school seems to answer phone calls or emails. I think that is part of why asking my professors for things like that is so scary, because if they say no then there’s nothing I can do about it.

Luckily this professor is kind and understanding and he was willing to let me participate from a seat when my pain is too bad for standing. He did bring up, though, that with how quickly things seem to be getting worse what am I going to do when I have a classroom full of students and problems like this? Am I going to be able to? And I had to honestly answer that hopefully with accommodations and a mobility aid which I plan to get as soon as I’m not living with my parents I should. But honestly, it’s not a guarantee. I may be getting this degree for nothing.

Losing my mobility and freedom slowly is scary. But honestly the thought that I’m putting all of my energy and money into a paper that says I can do a job that I may end up unable to do, leaving me broke on top of that, might be scarier.

[ghostofazebra]

I’ve decided I’m posting too much about what my conditions are doing to my life on main, so it was time for a sideblog. This is going to probably function as something of a journal and rant space about chronic illness and disability. If anyone else wants to rant or journal their experiences as well, I invite you to the ask box. I don’t have much experience in the community or with the technical aspects of managing my condition yet as I was undiagnosed and managing poorly until quite recently, but I will do what I can to give advice if asked or an understanding ear if not. Either way, I’ll be here posting as a way to understand my own thoughts and maybe get advice from the broader community at times. Welcome to Ghost’s Zebra Journal!