Tag Archives: Migraine

Self Care = Work

It sounds so relaxing doesn’t it? I’m going to practice self care. It sounds like bubble baths with a good book and relaxation days at a spa.

It doesn’t sound like forcing yourself to eat when you are nauseated or to exercise when every nerve in your body is already screaming or getting enough sleep with insomnia or taking a shower when touching your skin hurts you.

It doesn’t sound like applying for SSDI or acknowledging your disability or cancelling plans because you are over taxed. It doesn’t sound like doing laundry or making your bed.

That is what self-care is. It is doing the hard thing for yourself because you know it will make the rest of your day a teensy bit better.

Really it’s self-work. It’s adulting. It’s setting boundaries and learning to say no. It’s making your space pleasant for you so when you are forced to spend a lot of time in it you aren’t looking around thinking about all the tasks you should be doing. It’s making doctors appointments when you need them and avoiding triggering foods.

And sometimes it’s getting a massage when your skin can’t handle being touched because the underlying muscles need it and if you are lucky you might have relief in a few days after you deal with the bio-feedback from the massage.

And it’s missing the days when a massage was just a massage instead of a medical treatment.

And it’s acknowledging it here on your blog and then letting it go.

Much love to my spoonietribe. Keep on keeping on.

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.