what's this coffee spoon stuff?

I was diagnosed with Lyme Disease in 2002. Since then, I've not felt well. I was unfortunate enough to have some other medical problems prior to that but mostly they were episodic. Since 2002, there hasn't been a single day when I have felt well. Always there's some level of the "post lyme" which could be chronic lyme or could be an autoimmune disease. Sometimes on top of that are the migraines, or the endo, or the intestinal problems, or the out of the blue shit like my hip going out. Sometimes it's everything at once.

I do write about these things here, but I don't write about them as often as I feel them. It seems overwhelming, not simply to me - I mean I will live with that regardless of what other choices I make. What I find mostly overwhelming is other people's responses. I sometimes write about those responses and how they affect me here too, but again, not as often as I encounter them.

There's a social proscription against too much complaining, and complaining of a certain type is especially proscribed. My god, I'm an abuse survivor, an incest survivor, a feminist, and what is most quickly summed up as a liberal. I've got way too much complaining to do already without adding in the sickness stuff.

So lately, I've been posting the medical stuff more on a blog I devoted entirely to medical stuff. I figured that blog's title, description, and content would help self select for readers who are less likely to have that automatic reaction healthy people have. Oh yes, they do tend to have it. And I deal with it enough in my outside life. I dealt with it once here and I didn't like it one bit. The Tea Room blog has a lot of other stuff on it and most of my hits are from people looking for that more general stuff. I find that some days I just don't want to deal with the ignorance which is likely to come from someone who would see the illness stuff as the final bit of evidence that I am inherently weak, not here at least.

What makes me mention all this now is - well there are a couple of reasons. One is that I feel like shit today, felt like shit since Wednesday of last week in fact. Not the cramps and endo whatnot, just shitty. For the first time since getting Lyme, I almost had to call someone to come rescue me because I felt so unwell I was worried about driving. Who needs the details? Me and my doctor I suppose, no need to list them all here. For here, it's enough to say I feel like shit. So it's on my mind.

Another reason is that I have been recently struggling with my faculty about what having a chronically ill grad student means. Does it mean I get the same standards for evaluating progress as my mostly healthy peers? Does my having three times as many publications as my peers prior to getting sick count for anything or will faculty continue to look only at my current rate of progress now that I have so little reliable stamina? Does being so sick mean I get allowances or accommodations only if I ask specifically for each of them in turn, in advance, and of any and all faculty and staff who might be involved in the relevant decisions? Are there limits on what accommodations I can have? Do I need to show documentation? All of those are good questions, and none of them are ones I've been able to ask because the people I need to ask them of have been dodging me since the end of the semester. Possibly it means what my advisor said to me when we were having one of what I now realize were casual discussions about it. That I'm not just not healthy enough to work at a research university. I might not be healthy enough to work. Her casual assessment of my employability was such a gem that this topic also has been on my mind since she said it.

The last reason I bring this up now is that I just found this truly excellent essay about living with illness and disability. It's called "The Spoon Theory". I posted about it on the blog I started for my health related stuff, and I decided to link my post about it here because the essay title and topic ties back in with why and how I chose my blog url for Do Not Enter The Tea Room. The "and coffee spoons" address for this blog is an indirect reference to the notion of being someone who has "measured out my life with coffee spoons", c.f. T.S. Eliot and Crash Test Dummies. The author of the essay does not reference the quote of measuring life in coffee spoons, however her Spoon Theory is exactly right, and it happens to tie together both of my blog-worlds.