(I have been avoiding writing this particular post (and thus, avoiding writing anything here at all) for about a month now. It's a particularly emotional update for me, which can be so scary to put online for everyone ever to read. But here goes.)
Waking up every day with RA is the hardest thing I've ever done. In the last month or so, I have gone from feeling as if every small victory counted to feeling like I have no small victories at all. Living every day in this body is an uphill battle, and a discouraging one at that. Sometimes, after an entire night of fruitless attempts at sleep, I'm so physically exhausted that I lie in bed until 4 in the afternoon. Sometimes it takes that long just to convince myself to get up and face the pain. I'm wearing a pretty dress right now, not because I feel particularly attractive in it (let me assure you, I don't) but because it's so much easier to throw a dress over my head than to try putting pants on for two hours.
In the midst of all of this, I started school once again. While I am thrilled to focus on something besides how utterly horrible I feel, I can't help but miss campus a little bit. Online courses are a WONDERFUL resource for a student like me, but being trapped in my apartment because I can't get up the stairs has begun to bring me down, down, down into the depths of RA depression.
As I try and shuffle through each day, I've begun to think about my options for the future. Because really, what are they?
Before I set off for college, I had so many grand plans for myself. For awhile, all I wanted to was to work with horses and ride every day for the rest of my life. When I learned how snotty and unpleasant the horse industry really was, I put those dreams to rest and moved on with my life. I focused on environmental studies, philosophy, and the ultimate goal: LAW SCHOOL.
Now here I am, five years into my undergraduate degree. I planned to be finished by now, and studying for the LSATs. All my friends have finished and moved beyond the undergraduate sphere. I'm left behind, feeling every day like more of a failure. My student loans pile up, I struggle to keep myself motivated and engaged in schoolwork, and the time drags on.
But what's the point anymore? I have finally, after a fierce battle, admitted to myself that I am completely and utterly unable to find a job. If my pain is so ferocious that it's trapped me in my apartment, how could I ever hold a regular job? How could I be a reliable employee? I searched the student employment ads like a madwoman for weeks before school started. I applied to everything I could find. I sucked it up and went to an interview. I didn't get many responses from my applications, and I didn't get the job. "Work from home" positions are few and far between.
So now, on top of worries about pain, about school, about my own well being, I have piled on additional worries about money. The weight of all these worries is incredible.
I have to face the facts: I am in too much pain to work. My disease is too debilitating. I cannot manage work and school and life with RA. Even after pumping over $3000 worth of medication into my body every month, I'm doing worse than ever. Disability is my only way out.
Admitting that I need to begin the application process for Disability Benefits has turned me into an emotional mess. The admission that I am too disabled to be a normal college kid hit me hard. By recognizing that I need Disability, what else am I recognizing?
I'm recognizing that I may be reliant on the government to pay my bills for the rest of my life. What's the point of a six and a half year undergraduate process when I'm just going to be disabled forever? Why even bother to complete the stupid thing? All I've been working towards is a career in environmental law. What's the point if I can't work anyway? What high-pressure environmental law career track wants a lawyer suffering from RA?
What's the point of keeping a horse? I feel, right now, like I will never ride him. I feel like a terrible horse mom. He's not being neglected, by any means, but he's not getting the attention he needs and deserves. I feel guilty all the time, and I feel constantly judged by the other horsepeople I happen to come across. Uno is truly the love of my life, but he's also an enormous expense and, because of me, a pretty useless pasture ornament. Why keep him if I'm not sure I'll be able to ride again? He deserves a great, happy home where he can learn how to be a useful working animal.
These admissions break my heart. I have never felt so low or hopeless. When my first rheumiversary rolled around, I was full to brimming with positivity and hope. I told myself repeatedly that this would be my year, and I would feel better than ever!!
It's not, and I don't. Physically and emotionally, I've never felt so awful.