I met another migraine sufferer last night and he and I spent a few hours discussing various symptoms, treatments, and attitudes about migraines.
It was wonderful.
It puts me in an odd place to feel happiness at learning someone else is going through this. I recognize it’s not that I would wish this on anyone so much as it is having the opportunity to discuss my situation with someone who truly understands it. Talking triptans and DHE derivatives and triggers with anyone who doesn’t have migraines doesn’t seem like a good plan.
Truthfully, discussing migraines with people who don’t have migraines isn’t usually a good plan. I either get the infamous “Have you tried…” or I get “Wow. How do you do it? I couldn’t do that.” The former is something I sit through because everyone means well and is trying to help. The latter just makes me feel badly. I’m no superhero. I do it because the other option is to die.
I don’t want to die.
So having a discussion with another person who understands aura and triggers and the crazy side effects of all the weird medications they try on you is awesome, even though a part of me feels like a bad person for celebrating that another person has this too!
It just goes to show you that misery truly does love company. It’s so nice to find another person who feels your pain.
Sylvia Plath wrote “How did I know that someday―at college, in Europe, somewhere, anywhere―the bell jar, with its stifling distortions, wouldn’t descend again?”
I understand exactly how she felt.
The doctors don’t know what causes my headaches. I spent 12 days in the best hospital in the nation for headache treatment and we are no closer to knowing why I get them. Is it hormones? Stress? Food? Nighttime teeth clenching? Pressure changes? All of the above?
I lost four months to my headaches when they were at their worst. Four months of not working, not going much of anywhere. Four months of distance in friend groups and business relationships. Four months of earning no income, not volunteering, and generally not being me.
Now I am better, kind of. I am back to work a few hours a week. I am up to camping for a few days at a time and able to table an event here and there. I can contribute. However, I walk around on tenterhooks, uncertain whether or not I am going to be able to continue this pace or if I will suddenly turn bad enough to have to stop working for four months and spend another 2 weeks in the hospital. I live under the possibility that one day my own bell jar will descend again.
I don’t drive much precisely because I never know if, once I have gotten somewhere, I will feel well enough to drive back. Will I get to a restaurant to meet a friend only to have to send someone for my car in the morning because my headache upped it’s game and rendered driving impossible or will I be able to be out for two hours without any negative consequences?
This past week is a perfect example. I felt great. I gardened, I cleaned, I cooked. I spent time with the kids. Then the 4th of July hit. Suddenly I had to cancel my original plans and find another way to celebrate. I took medication and saw the doctor and this morning it was a little better. Then this afternoon it got worse. I spent the rest of the day generally in bed resting waiting for it to calm the hell down.
Three not so great headache days in a row and I am facing the fear that I will fall back into that hellish place I awoke to in January.
I have lowered my work load and pruned my volunteer efforts. I chose two organizations to stay working with and dropped everything else. I can handle a couple days of work a week. I have to try to succeed at this. If I give up and just wait for the problem to go away I will spend forever waiting.
I take my medication and see my doctors. I eat right and exercise. I sleep. I have built in rest periods in my week to replenish my energy levels. I am doing what I can to make this work.
I just wish there was a way to do it without having that bell jar hanging over my head.
Managing life with chronic illness requires savvy spoons