So, as I’ve stated, I’m out of work on disability. My doctor has put in that she feels I’ll be set to go back as of October, well, that’s what she told the state. My place of employment is sort of wondering if I’m coming back, and when. So am I. I have days where I feel like I could be doing something, and other days when I feel like the walk from the bedroom to the living room is just too much for me to handle. With all of that said, it’s hard sometimes to really know what I’m supposed to do with my life. Yes my life.
I’m finishing my M.S. right now, and because of getting sick, I’m not going to be done until February when I was slated to finishing in November. Fine. Whatever. EXCEPT…my next round of infusions (if these infusions worked) will be sometime in December/January. December would suck, I have a class on campus that month. January could work, except, I’m working on my thesis January-February. I’ll be in bed anyhow, so it’s not unacceptable, but it’s annoying, especially when you consider she’s telling the state I’ll be okay by October, but I’ll be having another round of treatments that pretty much kill me for 4-6 weeks in December.
If the state of California was giving me a livable amount for disability, and my alimony remained as it stands, then I could, realistically, focus on school, and not work until after I’d finished my degree. That would be the dream, kind of.
See, I’m not someone who likes not working. I’ve always worked. I’m also not someone who likes GI bleeding, fainting off the toilet, and having to explain to maintenance why the seat is not attached, the toilet paper holder is not attached, and to my guy why I have a bruise the size of an apple on my hip. All these things…they suck. They’re also my reality. I don’t want to be disabled, but I also don’t want to keep pushing myself to be normal when all that does is prove that I have limitations.
There is this inherent shame around being on disability when you go out and do anything enjoyable. I went to a foot reflexology spa, and was crucified for it. A few people from work found out I’d gone out, and the blowback was enormous. It’s as if being disabled means you have to be 100% bed ridden, at all times…but that’s not really how it works. If anything, putting my life on hold simply because my body has decided to forsake me, would make me more disabled, because I’d sink into a depression even worse than the one I already find myself in.
I wear makeup to cover the healing facial lesions, and acne, from all the steroids. I smile when I’m in pain. I drink way too much caffeine to compensate for the overwhelming exhaustion that plagues me. I contemplate going to bed at 6pm, because I’m tired, and I know if I wait I’ll just be up until 2am. I’ll miss my window.
Everything is complicated when you have a chronic illness. When you have something most people haven’t heard of, it’s more complicated. I have to take time explaining the disease, and then explaining how it impacts me. Dating? I’m glad I have the guy, for now, for however long whatever it is we’re doing lasts. He gets it, but other people haven’t. They Google Behcet’s and think I’ll be some ulcerated being. They assume my genitals are destroyed when that’s not how it works.
Worse…people assume they know me, and how I feel, based on that one conversation and that one diagnosis.
I am more than the sum of my symptoms, but at the same time I need people to consider all of who I am, and my symptoms, when they are deciding if they want to be my friend, romantic partner, or anything else in my life.
I find out Tuesday if the Rituxan worked. My body is exhausted and I know a lot of it is building up my stamina after so much bed rest, but still…some days I have way more energy than others. If I had to work today, I couldn’t. Yesterday I could have. It’s weird, it’s unpredictable, and it’s why I’m collecting my sad $200 per month disability checks.
You know what else sucks? Wanting so much more. I want to work 40 hours in a lab and love my life and job. I want to be something more than what I am right now. I want to believe someone could love me for who I am, and want to be with me long term, but I don’t ever see that happening. I want to feel deserving of love instead of like I’m a liability. I want energy to make friends, and go to events, and even though I’ll always be introverted, commit to something, like trivia nights, or a bowling league.
Instead I sit on my couch. Destroyed from walking 3 blocks in 90 degree weather. Wanting to go see Comic Con craziness, but accepting that I’ll only make that walk one time, and it’s not today, because I have friends I may meet up with tomorrow. I also sit here, contemplating how much Web Cam models make, and thinking about toning up and doing it, because I can’t live off what I’m currently making.
That is life. That is my reality. That is my aggravating and pathetic existence…for now. I have to hope it gets better, that I’ll get better.