Life as an Extreme Sport

Snapshots in Chronic Pain

It’s been two hours. I hurt from sitting up straight without anything supporting my back. My face feels tired from smiling and forced cheer. The paper of the exam table feels like sandpaper against the back of my knees, and I lost feeling in my hands after they asked me to squeeze and press and push and squeeze again, for some indeterminate test of muscle strength, when the problem is my nerves. My medication history is nil at the moment; it’s been years since I’ve had anything prescribed to control the pain, and they know this. They’ve explained that they also cannot and will not ever prescribe pain medication for me–I’ll have to find a willing primary care physician. That’s deflating; why am I here? They hand me a cup to piss in on my way out the door. No pain medication, hours of going over my history, and I

Continue reading

Long-term Antipsychotics May Be a Medical Mistake

I’ve debated whether or not to post this since seeing Robert Whitaker’s lecture slides and heard about the results of his talk to NAMI from friends who were there, but ultimately decided that since this is an actual personal issue for many people, due to your own health or those of people you love, it’s worth making sure the information is available as far and wide as possible. Consent to medication needs to be informed, blah blah bioethics stuff. Before the TLDR, the gist is this: evidence suggests that the best treatment for schizophrenia is not continual medication, and that a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis. And perhaps even more importantly, there’s significant evidence that the long-term use of antipsychotics creates a

Continue reading

A Shift in Expectation of Self

I really like this post on body policing, and in particular, how people seem to feel qualified to tell someone with a chronic illness that if they just did X – largely either adopt some quack routine or exercise – that all their problems would go away. In particular, I really liked this: You’d never run a marathon with pneumonia, but a man with CFS needs to, because expending all that additional energy will make his problems go away? You hear someone say that their life is awful. You hear them say that they’re in pain. You hear them talk about the medications, the doctor’s appointments, the flare-ups, the feeling of never being able to escape. You hear these things and you say “laziness”, but it never occurs to you that your own illnesses- a cold, the flu- make everyday tasks difficult- difficult enough that, quite often, you will complain

Continue reading

Tuna Tuesday: Times You Don’t Want to Wash a Cat

“Hey, Kelly? Weren’t you supposed to start writing about a week ago, give or take?” “Why yes, Anonymous Internet Voice, I was!” “Well, you didn’t. Why not?” “It’s a bit of a story, Anonymous Internet Voice, but pull up a virtual chair and I’ll tell you all about it…” Okay, cutesy conceit dropped, but the point remains. I was supposed to write. I didn’t write. What the hell happened to writing? Well, a record heatwave for this early in the season turned me into a puddle of Not Doing. I don’t have central air in my apartment, and only my bedroom has A/C. (In this photo, Toledo is helpfully illustrating that it’s so hot all his bones melted.) In fact, it was so hot that, when I wasn’t trying to keep myself cool, I was trying to cool down the cats. However, I discovered that a wet clothe on the

Continue reading

Trust/Time/Pain Relation

It occurs to me that chronic pain/suffering is the opposite of trust. In fact, it is in many ways the ultimate in broken trust – a broken trust in your body. We have this implicit notion of what the body can be like, and should do. How it should perform, respond, and behave at any given time. We trust that when we want our body to reach for the wine glass, the right hand will raise and do so , that it will not spasm and drop the glass, that it will not be wracked with pain. Time loops back into the equation because trust and time are intimately bound. One cannot exist without the other. Time itself is a construct; nothing exists but now, the present. We are always in the present, passing through it. We never reach the future, and the past is always behind us. Trust is

Continue reading