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Sitting on the Sidelines

Hiking? I’m in. Dancing the night away at a wedding? I’m in. Climbing on playground equipment? I’m in. Playing Rock Band? I’m in. Well, I want to be in, but this chronic migraine thing tends to get in the way.

When I think of the people who have met me in the last 10 years, I wonder how much difference there is between how they would describe me and who I truly am. What other people think of me is not the issue here, but rather the vast disconnect between the person I see myself as and how I behave.

I am not quiet and withdrawn, never joining in group activities. I am not the person who gathers everyone up to go on a hike, then waves goodbye from the couch. I am not the woman who leaves the party early if she even manages to make it at all. Except that I am. Not by choice or because that’s my personality, but because of chronic migraine.

It’s the kids in my life I wonder about the most. They are too young to understand what’s really going on, they just see what I’m not doing. To them, I’m the one who “never feels well,” which my niece said when she was nine. The one who is “no fun,” according to a friend’s 11-year-old, because I turn off the music or don’t play the board game everyone else is playing. They can’t see how much I want to engage in the world, nor do they see how hard I constantly try to participate.

I used to worry that chronic migraine had changed me into someone who sits on the sidelines, that this was the person I’d become and would always be. I’ve had enough treatment success — and therapy — to know that the real me is still here, she’s just been hidden for a long, long time.

Sitting on the sidelines is not my thing, but it sure looks like it is. How many people do I know who think I abstain from fun by choice?

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Comments

  • Dee
    5 years ago

    What I’ve learned is to give those closest to me my best when I am well, even if it is just one day of the week where I feel well. Let them see glimmers of the real you when you are well and they will surely understand that it’s the diseases fault when you are on the sidelines. I’ve come to realise that friends and family are only wanting to include me whether migraining or not, sidelining or not.

  • Justanothermigraine
    5 years ago

    Jen you are not letting migraines win! And migraines are not your fault! I believe migraines steal energy from us and we are forced to try and balance our lives accordingly. For example, if I know I’m working two days a week, I save my abortive meds for only those two days a week (can’t take them more). Then I save my less strong abortive for another two days that I have scheduled important activities like teaching a class at church, or leading a girl scouts activity, etc. The other 3 days? I can’t schedule important activities because I will likely have to cancel or I will perform poorly due to migraines. On those days, I schedule more breaks, a nap, ask for help ahead of time, etc. I have chronic migraines that require a daily action plan such as this. So instead of not doing things, I have learned I can do more if I purposefully do less. If I schedule too much, I have to cancel everything as the migraines get too intense from the more extreme energy drain. As far as what other people think? I make a point to educate them and try not to take their hurtful judgmental comments personally. I unapologetically stay clear of these people as much as possible. After all, if I have limited energy resources every day, why waste it on hurtful people? I sum it up like this…if being around certain people means I have to take a vicodin (for the ensuing migraine these people often bring on) then is it worth it? I will only say yes occasionally as when dealing with in-laws as needed.

  • Gail
    5 years ago

    This has been my life also, since 1990. It is hard to have so many restrictions. I know even with my family who has watched me suffer over the years, I think they even think I am making some of it up. The can’t eat this, or that.the please fix mine with no seasoning.The ear plugs in my purse. The I can’t drive or babysit days. The can’t have a drink of wine. The can’t get over tired. The low pressure storm. The changes in air pressure in airplanes. No sitting in sunshine, can’t get too hot. I can barely stand myself! I get depressed. But then I will string a few good days together and realise I must be the most optimistic person on earth! I feel the old me, I get hope. I try new meds always with hope. Some days I can escape a trigger, and I get hope. Pretty much I get knocked down again. Get back up again. But I think the only one who really sees this is my husband.And I even try to hide how bad it is from him.

  • bluesguy
    5 years ago

    Wow, what a great article. I completely relate to what you are saying. My migraines started to become chronic in 2008. At that time, I spent much of my time at the gym, working out (lifting and doing cardio). I too was playing in a blues band, golfing, and working in a fairly stressful career. But now, I have lost most of those things due to the chronic migraines. I too feel worn down and fatigued by the migraine cycle. It does not feel pleasant when the mirror that others give back to us does not match the picture we want to hold on to. For this picture gives us hope. Thank you for sharing your world for the benefit of others. It helps.

  • bluesguy
    5 years ago

    Wow, what a great article. I completely relate to what you are saying. My migraines started to become chronic in 2008. At that time, I spent much of my time at the gym, working out (lifting and doing cardio). I too was playing in a blues band, golfing, and working in a fairly stressful career. But now, I have lost most of those things due to the chronic migraines. I too am feel worn down and fatigued by the migraine cycle. It does not feel pleasant when the mirror that others give back to us does not match the picture we want to hold on to. For this picture gives us hope. Thank you for sharing your world for the benefit of others. It helps.

  • Jen Cragen
    5 years ago

    I too give up a lot because of the migraines. I’ve been told I’m letting the migraines win. I can see that, but I also get tired…. it’s just a lot to take in in the last 2 years since I contracted bacterial meningitis. I just need folks to realize life is hard, not by choice, but by it’s very nature.

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