The price of obstinacy

On Saturday, determined not to let the Beast have all the shots, I drove to Manchester, NH for an SCA event. Since this one is indoors, I figured I had an even chance to seeing something. I lasted about three hours before Beastliness. I finished my last errand quickly, and beat it before the tic got out of hand, I hate the tic almost more than the pain, because one begins to look like a refugee from a horror film. This can alarm misinformed people, which can lead to restraint, and ambulances, and EDs, all of which are unnecessary.

As usual, once things set in in earnest, eating is a trigger. The exception is breakfast. I don't eat a big breakfast, which may be why. However, I'm otherwise living on soup, and scrabbling to dig up soft recipes that offer a little culinary challenge while having a mush-like consistency. Tonight was curried rice with (bought'n) Punjab eggplant. I've found a recipe for African peanut soup that I can prepare quickly, which is important when one can only count on a few healthy hours a day.

Here, without naming names, I must point out that any chronic illness brings in its train the well-intentioned but ill-informed friend or relative, who is sure to have something that will keep you healthy and happy and have nothing to do with the problem, The latest was "well, last year you weren't sick, and you went out a lot to shovel snow, so why don't you start taking nice outdoor walks."

Item: last year I was out a lot because I had to be out, and much of the time I was sick but our seven-foot drifts gave us other worries. I was not as sick as this year because TN plays with you.

That's the simple answer. The more complex one is that treatment of TN and other neuropathies calls for a delicate balance of meds in the blood and liver that will suppress the symptoms. Sometimes, the liver reserve falls, the blood reserve follows it, and shit happens.

The game is trying to regain the balance while avoiding as many pain stimuli as possible. This isn't easy with a progressive disorder, especially one that has stolen a march on you. Go for a walk? Sure. Why the hell not, when I can now get sick sitting at my desk in a warm office. Let's go back 200 years, treat like with like, and do the thing most likely to cause pain. How about a nice chewy three course dinner afterwards.

The best thing to do, if you know someone with TN or another neuropathy, is to be helpfully
sympathetic. Keep your sovereign remedies to yourself. Don't provide links to the latest bit of woo you picked up on Google. Those of us who have dealt with this for a long time (15 years next April, in my case) try to be partners with our clinicians in the treatment of the disorder. We read up peer-reviewed studies of the latest treatments, weigh the pros and cons, and try to enjoy the times when we have little or no pain. Amateur doctors don't help.