I have a friend who works with stroke patients. She says that they tell them to think in "seasons, not months," in order to estimate the pace of their recovery. This idea was helping me a season ago, in the fall, when all I was dealing with was nerve damage to my inner ear. Back then I was on a linear and fairly clear path, using vestibular therapy to try to rewire my brain around known damage, and like a stroke patient, gradually moving towards ever-greater normalcy.
But that was a season ago, and since then two other major issues have come into the picture: migraine and POTS. Or, maybe I should say one issue: autonomic dysfunction . That is to suggest that my brain is not running the show correctly, and my blood pressure issues and migraine issues are all tied back to this rat's nest of neurons in my skull. This is a lot harder to cope with I find, or maybe it's just that the grass is always greener.
I didn't have a good week. On Monday, I was told that it would be best for now to just stop attempting to exercise. It frankly is no longer safe and also is making things worse emotionally (always failing at it) and physically (lowers my blood pressure even more). On Wednesday, I cracked and ate four chocolate chips. The six weeks with no chocolate was getting to be intolerable, and although I had set the goal of making it all the way to February 1, flawlessly following the migraine diet, I couldn't take it anymore. So I ate the chips… and that night was horrible. I was nearly too dizzy to walk, and ultimately took an entire antivert just to be knocked out and make it all stop. The next day I was in a standing position, brushing my hair, and had the experience of suddenly nearly losing consciousness. I was able to get to bed and lie there for a while and recover, but it was not a fun moment. That's the first time it ever happened like that and it was really scary.
It's becoming painfully obvious that I can't solve this– as I had hoped– with just stopping vestibular therapy, taking lots of vitamins, and removing all dietary triggers of migraine. I'm going to have to go on some sort of serious medication.
After the hair-brushing incident, I went into the office at school and told them that I can no longer drive anyone else's kids to skiing. I was trying to pitch in but this is irresponsible. I feel anxious enough about driving my own kids… the office ladies of course were nice about it, appreciated that I came forward, and will find other moms in other minivans who can take a few extra kids. The idea of NOT driving at all, the implications of that, are too huge to fathom. We'd need to hire a full-time nanny and it just seems impossible to believe that we would or could ever do that. My job would go from being full-time mom to being full-time sick person and I think I would find that just crushingly depressing. I feel that I need a doctor to tell me "You should not be driving." Or "You are okay to drive." In effect, that's what they DID tell me, as the material they gave me after the tilt-table test did not say anything about it. It just said to ingest huge quantities of salt and fluids and to be careful when changing position, it did NOT say "stop driving!"
I was talking to a friend on the phone the other day, who said that she wishes this was all like a TV doctor show, where they just put you in the hospital for three days, run every possible test, and then at the end of the hour, reveal the cause of the problem and cure you. Especially the cure you part. But this has gone on for so long now, and these month-long waits between tests are just excruciating. Eight more days until the radioactive blood, and even then I don't think I'll get results until later in the week, because of all the lab work that will need to be processed.
I found this website about POTS. http://www.dinet.org/ The little video on there is pretty hard to watch for me, so depressing! Young women in wheelchairs with service dogs… oh boy.
Here is an npr story about the migraine diet that I'm on. There's a link to a pdf on the left hand side, but I can't get it to upload over here right, so just go and take a look if you're interested. http://www.npr.org/templates/story/story.php?storyId=18916061
The trickiest part, by far, is the avoiding of MSG. But after six weeks, I can say I'm getting the swing of things pretty well. Today I'm going to make some triple ginger cookies so that I can have a treat of some kind in this chocolate-free wasteland.
What better thing to do on a cold and dreary January morning, than look at seed and flower catalogs and make plans for the garden? So I was trying to cheer myself up by doing this, thinking about starting a hydrangea garden over by the play structure on this semi-shady hillside bed that is now covered with poison ivy and weeds. I was thinking about whether I should plant dark purple salvia all along the front of my rose-daisy-russian sage area that I can see from the kitchen. And then I started thinking, oh lord, what if next summer is like the last? What if I'm in bed every beautiful Saturday, incapacitated, and the garden is full of six-foot tall weeds? What if even by then I don't get my life back, and everything I order now just sits in the boxes and rots?
But no, I can't think like. I've got to map out a different plan: a week from now, the radioactive blood test reveals something curable. The neurologist and the cardiologist agree on a single perfect medication for me. I start it and it works. And then, two seasons from now, I'm out in the garden in my sun hat, tearing out those old weeds from last summer and putting in my purple salvia.