STUFF I DIDN'T KNOW WHEN I WAS STILL ABLED...
It's not always obvious what's wrong.
Hi, Doctor. I'm tired. Like, all the time.
No. All the time. I wake up exhausted. I fall asleep at work. I fall asleep in the shower. I'm scared to drive.
No, Doctor. You don't understand. I'm not 'sleepy.' Not 'drowsy.' I'm tired in my bones. My blood feels heavy. The weight of my head hurts my neck. I can't think sometimes--I forget how to read--i get lost in familiar places! I say 'tired,' but I mean that 80% of my life, I feel like a sloppy heap of mud splattering and crumbling from too much moving, too much thinking, too much feeling, too much light, too much noise, too much everything. I'm confused and disoriented and like I'm in a terrible dream.
That's a symptom of a lot of things?
Anemia. Migraine. Sleep apnea. Vitamin deficiency. Thyroid dysfunctions. Brain diseases. Heart diseases. Neurological disorders. Blood disorders. Autoimmune issues. Depression and other psychiatric conditions. Lifestyle choices: sleep, food, activity level. Environmental factors: mold, pollution, allergies.
There's a lot of testing to rule things out, huh? Could take years? Yes, I know it will be expensive. Yes, I accept that some of the tests will hurt. Yes, I commit to rearranging my eating/sleeping/exercising habits and seeing every recommended specialist.
Doctor, you don't understand. Either we find an answer, no matter how long it takes, or I am trapped outside of the world forever for no reason. Not testing won't make these horrible feelings stop.
Can you imagine feeling this way? Always? During your friends' birthdays? When your boss demands work? When you're home alone in the middle of the night trying to remember how the sink works? During the commute. During the shower. Taking out the trash. Feeding the cats. Staring at your bills. Talking with your family. For years... weddings, funerals, holidays, weekends, 4am, 4pm, when your loved ones need you, during every emergency, while you fail at your job, at your hobbies, at your relationships, at being your basic self?
Fuck, Yes! Doctor! Run! The! Tests! We are burning daylight!! Let's get this ball rolling! Journey of a thousand miles, begins with single step, etc!
I do want to feel better. This is not my imagination. It's not my fault. I am a reliable witness to my own life and I don't care how many tests 'come back normal.' Those must be the wrong tests to find what's haywire. I know something is wrong and even if we can't fix it, I must understand it.
I'm now in year 7 of trying to improve my situation. I know so much more about my conditions than I did. I am getting help. I still don't have a full picture. I'm still disabled.
But it's not like it was.
Please. Don't give up. Diagnosis can take years. Some people never get a firm answer. Regardless, you will learn ways to cope. You will meet people who help you cope. Don't give up on yourself. You are worth the effort.
Seems like something we should all know.
Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.
yousharknotpass
gummygunk
