One of the frustrating things about having a chronic illness is that you often have to work on its time. You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal. Or maybe you plan for things to be bad, only to have a good day. Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home. Or maybe you just have a bipolar meltdown and are having trouble getting out of bed because your sense of impending doom is so damn intense.
I’ve been dealing with a lot of stuff healthwise lately. The prescription they put me on for the pain and swelling in my joints seems to disagree violently with my GI system. My pain specialist told me to go off it for a week, which helped enormously with my GI but wrought havoc on my joints. They’re now almost as puffy as they were when I first went to the rheumatologist.
It’s frustrating, because I’ve made commitments. I’m working on a research project that is intended to become an article written with a friend. It’s a big deal – law students rarely get journal articles published, so if I do, it’s a major feather in my cap. It’s also on a subject I care a great deal about: privacy and the internet. You see, I think we should be able to talk freely and read freely, without someone able to track every website I visit and every comment I make easily. I think it’s a good thing if it’s hard for the government to just jump in. If it’s important, the government has the resources to break most privacy systems that exist, they just want to have things set up so that it’s easier to do. And if you make something easy to break, the government is not likely to be the only entity to take advantage of that.
Anyhow, I’m getting sidetracked. So I have this project that is important to me both career-wise and in principle. I have deadlines and people relying on me to do work, and frankly sometimes I can’t. Sometimes my body is so broken that doing anything but lying in bed reading a novel I’ve already read a dozen times is impossible. When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.
When you work on chronic illness time, you have to have some give in your schedule. Maybe you’re lucky and have a flex-time schedule that allows you to get your work done whenever you are in the condition to do it, whether it’s 9 AM or 2 PM or midnight. Maybe you work few enough hours that you can rest enough between them to keep going. All told, though, it’s hard. It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others. It makes you feel like an unreliable flake.
For me, that inability to know how well I can keep my commitments is the hardest part. It makes me question whether it’s worth it to finish law school, because I don’t know if anyone will be willing to hire me afterwards, or if I’ll be able to work for myself. It is the one hint of bitterness for me in my fiance’s success at getting his job – the knowledge that such a job may never exist for me. And it is only a hint; the vast majority of me is deeply happy for him. And, er, also pleased that there will be money to buy shiny things, like fancy things to put in my hair and nice fiber for my spinning wheel and a silk robe to wrap myself in. Okay, so I’m a hedonist and a glutton, but these are the small things that make me happy. (If you’re curious about the nice hairthings, I’m going to be buying a hair fork from these guys – http://www.etsy.com/shop/grahtoestudio?ref=fp_ph_2&src=prvshp. I am thinking about getting something custom – they had this lovely fork with a crescent moon at the top, and I think I want one of those in maple, which is pale and lovely. Also, if you’re thinking about buying something from them, please tell me, because they have a referral program whereby I can get credit towards pretties.)
Ye gods this is a wandering entry. I should know better than to write tired, which I am doing. My block had this godawful block party today that involved a DJ playing music at rock-concert volume. In the house with the air conditioner running and good earplugs in, I could still make out every word of every song. It has left me with a bit of a headache, I’ll admit. Also, I just went back on the medication I mentioned earlier, so it hasn’t had time to do me much good, which means that everything HURTS.
So this is what working on Chronic Illness time looks like: this is the time when your chronic illness makes it hard for you to write coherently and cohesively. I know what I’ve written can be read, and the meaning is reasonably clear, but it rambles and forks like a bramblebush. And why? Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic. Obviously my mind in this state is pretty useless for researching for an article, much less trying to write anything!
So goodnight, everyone. Hopefully, tomorrow will be a more brainful day. Also, look for the announcement for the next Assistance Dog Blog Carnival here sometime before Friday.