Tag Archives: Migraine

So not self-helpful…

I think I may have PTSD when it comes to self-help books, books on migraines, or generally any written device intended to explain to me how to make my current state in life better.

I have been trying to unwrap why I loathe self-help lately and I have hit upon a theory. It’s a relatively new theory so bear with me but here we go.

Ours is a society of the quick fix. If we have a cold and can’t sleep we take NyQuil. If we have a cold and need to go to work we take DayQuil. What we don’t do is rest long enough for our bodies to battle the cold on their own.

Due to our quick fix mentality we have a tendency to offer solutions to the people in our lives who express problems. We rarely actually commiserate. It’s not because we don’t feel sympathy or even empathy for them, but our language of caring has morphed over time from listening and empathizing to offering solutions.

As a migraine sufferer I have had a lot of experience on the receiving end of solutions. It doesn’t bother me from friends or family but it’s the complete strangers that make me crazy. Usually when I meet someone and they find out I have migraines I get asked my entire medical history by someone without a medical degree because their fourth cousin once removed has migraines and maybe they can mention something my nationally recognized neurologist hasn’t thought of yet. It is exhausting and not a way I want to spend one of the rare times I actually leave my house to go out into the world.

I think this is why I hate self-help mechanisms. Rather than listening to each other, talking about our feelings, and creating deep, strong bonds of friendship we are offering other people’s takes on our interpretations of someone else’s problem.

Meet someone at a party going through a divorce? Offer them this book. Got a brother with MS? Here’s a book on how one person worked through their experience with it. Children being… children? Here’s a book on how to parent in a way the person who wrote the book likes most.

Now I am not saying seeking self-help is a bad thing. Personally, if you want to read books on parenting, relationships, investing, whatever medical diseases you may have, and that helps you handle life, go for it with my blessing! There is nothing wrong in my mind about seeking out information.

What upsets me is offering these unsolicited solutions to others in lieu of care.

I get it, caring is hard. It’s time consuming, it takes real listening and empathizing to truly succeed at it and none of us have the time or the energy.

Is that last part true though? Would we find consoling someone less tiring if we did it more often? Could it be we are out of practice and therefore it seems more tiring and time consuming then it truly is?

Here’s my truth: My best memories are from times when I opened up my mind and heart and joined someone in their hardships. Really joined them. Crawled down into the hole they were stuck in and sat with them for a while. I have been blessed enough to build truly amazing relationships with people because I was simply sitting with them and listening when they were having a hard day.

Sometimes the way to be the most helpful is to offer no help whatsoever.

The Bell Jar…

BellJarMigraineSylvia 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.

Celebrating the fourth…

I had intended to take the children to see the fireworks display down by Elitch Gardens. I had the three top spots all mapped out and planned to create a dessert picnic with glowing arm bands and pop-its and everything. They were excited. I was excited.

Then about an hour and a half until we were supposed to leave, as I was preparing dinner, my headache went from it’s normal manageable state of background noise to it’s angry roommate screaming in your face setting. Impossible to ignore and work around. My spirits plummeted.

I went to lie down and took some medication. It didn’t get any better. I tried to stay calm and relaxed but the unfairness of it all just hit me all at once and before I knew it I was sobbing. Then it really didn’t get better. Dan came upstairs and offered to drive me and the kids to the fireworks display even though it meant another night of less than six hours of sleep. That calmed me down. I told him no. I reminded him that managing my disappointment when this happens is part of having an intractable migraine.

I came downstairs and told the children we would have to stay home. They both threw their arms around me and said it would be better this way. Then Marlena went with Dan to get some fireworks for the house and Oliver helped me make dinner. He chatted and smiled the whole time. When Marlena returned home she triumphantly showed off the fountains, sparklers, and other ‘splody devices they had picked up.

Neither of them were disappointed. They enjoyed the food and the home sized fireworks display. We lit sparklers and fountains, snakes and smoke bombs. We stood back in the alley and watched them light up the night. Neighbors across the way cheered at our little fireworks display. This was the first time my kids had sparklers and fireworks at home so a night that looked as though it was going to be ruined was actually wonderfully memorable.

It was all ok. Despite my constant and inconvenient shadow, we had a lovely and close-knit fourth of July.

To Distraction!

Did you know that focusing directly on your pain can inhibit your body’s ability to produce pain fighting endorphins?

Apparently if you hurt and you lie there thinking about it you can actually make yourself hurt more. This may be why I feel better when watching t.v. or reading a book than I do when trying to go to sleep at night or waking up first thing in the morning. Having something distract me from my discomfort has been more helpful than any pain killer.

The trick is managing the distractions in a way that doesn’t use up all my spoons. I can visit with people a couple of times a week but the gatherings have to be small and end early or else I sleep for days afterwards and feel like I can never wake up. I can work and clean, but I have to have days to rest in between. When I am resting I have to have distraction with minimal effort.

So how do I rest with minimal distraction and still improve my mind? After all, there are only so many hours one can watch television or read before going quietly mad and if I crochet one more hat I am going to strangle someone with yarn.

Don’t worry. I have plans. Evidence blogs, coding classes, sign language classes online, app development classes. The whole kit and caboodle. I may need to lie down and rest a lot, but there is a lot a person can do lying down.

Fading out…

I missed the huge Memorial Day BBQ my friends were having.

I wanted to go. I wanted to see everyone. I just couldn’t. I thought about a room filled with dozens of people laughing and talking over each other, children running around and playing, music, etc. I thought about myself, sitting in a corner, watching it all happen around me as my headache slowly began to build to an intolerable level.

My photophobia and phonophobia are such that I can’t be at large, loud parties without developing a debilitating headache within about an hour.

It’s been 8 months of headaches every day and I feel myself fading out of friend groups, excursions, and social life.

It makes me so sad and angry and frustrated. I want to be at the big loud parties, the group events. I want to share in the moments these beloved people are making together. It’s yet another thing that I feel has been taken from me.

I am disappearing from the world I used to belong to.

Vertigo…

Everything is spinning and I can’t keep anything down.

It’s awful. I don’t want to eat, I don’t want to drink. I can’t close my eyes, I can’t keep them open.

I spend my time caught between trying to keep some crackers down and violently throwing them up.

It started with the latest storm. This awful internal movement in my head, this certainty in my body that I am floating on the wreckage from a ship. Bobbing up and down in the ocean, no solid land anywhere near me.

The room warps and wends in front of my eyes.

It’s horrible.