I have nothing new to say. The words I’m about to type have been typed by me and many before me. They’re not new, and I hate typing them.
I am tired of being sick.
I am not just tired of being sick, though. I am tired of being tired. I’m tired of being depressed. I’m tired of people not understanding my situation. I’m tired of not being able to explain my situation. I’m tired of not having answers. I’m tired of being told to be patient for answers. I’m tired of not talking about being sick because I’m worried that I talk about it too much. I’m just really tired.
It’s not going to magically get better anytime soon. I’ve been getting comfortable with the idea that I’ll always be sick and that this is just a part of me now. There is no Doctor House for me. This will not be over in a period of time that an episode of TV can cover. And yet, I must keep up hope, that there is some magical cure out there for me. I must at once accept my status quo and reject it. I must not talk about what I’m facing, because it’s big and dark and scary and sometimes really gross. But at the same time, I must be courageous and fight this battle and speak my mind.
I am tired.
I’m tired of this being such a big part of me.
Being sick is humbling. Being sick is exhausting. Being sick is boring.
I’ve been sick for three weeks now and it’s driving me up a wall. The doctors have no idea what is wrong with me and so I spend my time either in pain, hopped up on painkillers or waiting to be in pain again. Every once in a while, I’ll go just long enough without an episode (six or seven hours) and I’ll start to hope that what whatever this is has passed on for good. But it always comes back. It’s like whatever this is enjoys taunting me with the idea of freedom.
I’ve said it elsewhere, so I don’t think it’ll be a shock to anyone who reads this, but I’ve taken a leave of absence from work. Whatever this is, has no respect for deadlines. And even when I’m not in pain, I’m usual loopy as all get out. It’s incredibly boring and demoralizing. I love working, and now not being able to? The first half-day was nice. Just catching up on sleep and etc, but I quickly run out of things to do. Though I have half a dozen craft projects around the house that Will is allowing me to leave out so when I want to work on them, I can. It’s hard to take on work when you don’t know for sure when you’ll be able to work on something. Thankfully my bosses are amazing and have told me that when I’m ready and well – and _only_ when I’m well – they’ll have some non-deadline work to do at home. I’m so lucky to have them.
Going to see doctors day in and day out is difficult. Especially since most of them end up saying flat out “We have no idea what is wrong with you.” The new GI specialist I say this week suggested a new drug this week and it was disastrous. I was on the floor in pain for three straight hours. You know what is worse than the doctors not knowing? Doctors making it worse. It’s not that I’m mad at them. I know they are doing the best that they can with this mystery, but it’s still hard to deal with.
I think the worst part of all of this is how lonely and guilt making being sick is. If I didn’t have friends online that I could talk to every day, I would probably lose my mind. Will is great for conversations, but he’s away the majority of the day and the cat is super great at cuddles, but that’s about it. I miss the people from my office. I miss being in the middle of a crowd. I just miss interacting with people. Will and I went for a walk last night down to the edge of the island which is my favorite place. It’s got a great view of Brooklyn and the Brooklyn Bridge and I just love it. There are a few photos from the area that I’ve posted online. It was fantastic to get out and see the beautiful view and get fresh air, but by the end of the walk, I felt guilty. I’m sick. Shouldn’t I be at home in bed not enjoying life? If I’m well enough to go on a walk to see this beautiful thing, should I be well enough to go to work? It’s a hard thing to grapple with. I’m going to see if I can go to some museums in the area that I’ve never made it to before. Things I always said “Oh I’ll do it next time I’m here visiting Will” know that I’d be just as greedy about time with him the next time around. I can go see those right now and Will thinks I should. I may be loopy, but when has that ever stopped someone from enjoying art? Hell, sometimes it helps them understand it better.
This is my life right now, and I have to say, I’m not a big fan.