Wednesday, September 5, 2012

Coming out of the closet

Talking about migraine disease



How do I do it?  I can only address this topic with a look back ..........  It has been a long process for me to admit than I have severe chronic migraine and that it affects my life on a daily basis.  Now, at the age of 66, I am (usually) very frank about how I'm feeling at any given time.  I don't broadcast it unless I'm feeling bad and can't make it to work or to some other commitment because I don't want it to enter into every conversation, but I don't hesitate to explain if the need arises.

Me & the kids

There have been many steps in the long process of opening up.  It began first at home, out of necessity.  When my kids were young, it was very difficult to admit that I couldn't always be there for them when I wanted to.  At that point, I didn't know, hadn't faced the fact that I had a chronic health problem, much less "migraine disease."  And it fluctuated.  I would have periods when I was fine for a while.  Then depending on many factors, my headaches became more frequent and impacted my life and those around me.  Over the years, I have had to take at least 4 or 5 leaves of absence from work plus a permanent reduction of hours at my present job.  In order to do this, I had to make clear to my administrator what the problem was and why I needed the time off.


Janet
Tucker
More recently I have come out to my friends in a fairly clear way.  My husband and I belong to a small group of families who exchange work.  We move from house to house on a monthly basis doing, mostly, gardening and other outdoor projects.  We convene on
Sundays.  We work for 2 to 3 hours and then eat together, potluck.  


Scott
We are all very good friends and this has become a really wonderful way to get together, share and have a good time doing it.  Sometimes I just can't do it.  At first I felt really bad about this, but the longer we've been at it, the more comfortable I've become just doing what I can when I can.  I've gotten nothing but support from everyone.  Sometimes I do it all.  Sometimes I can't participate, and I just have to stay home.  And sometimes I come and eat and socialize and skip the hard stuff.  Having this freedom and support, with good friends, has been a big deal for me.
Ben

Like many of you, I come with a family history of migraine.  Sadly, that includes my 36 year old son.  When I first realized he had serious migraines, I was quite filled with guilt and dread - for him and what might lie ahead.  Now, I somehow truly know this is not my fault.  And I have a close confidant with whom I can share ideas and lessons learned.

This spring, for the first time, I went to a nationally-recognized headache treatment center, Michigan Headpain and Neurological Institute, for a 10 day hospital stay.  It was a huge step, a kind of surrender to the fact of my headaches as well as a plea for help.  Since asking for help isn't easy for me, this was yet another step in opening up.

Finally, I've begun in ernest to write publicly about living with migraine and it has become a part of my visual art too.  Being more open about living with severe chronic migraines has helped me open up to other things and people in my life.

Headcase

I often don't talk about my headaches with other people because, at any given point in time, I'd rather talk about my kids, my grandson, my art, my students, books, travel or hear about their lives.  On the other hand, if I feel like it or I'm having a bad day or I've learned something new or funny or disturbing about migraines, I speak up.  That's what it's all about for me.






3 comments:

  1. I have trouble asking for help, too. I'm slowly learning, I think, that open communication is better than clamming up when I feel awful. I also don't like to talk about my migraines all the time, but somehow find that they slip in to many conversations -- perhaps because to some degree, I am always in pain, and right now, it's always on my mind.

    As a completely unrelated side note, I absolutely LOVE the idea of a work exchange program between friends! My husband and I don't own a house, but if we buy one someday, I totally want to steal that idea!

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  2. Hi Kelly, I know what you mean about it always being on your mind. Hard to forget when it's a daily struggle. The work exchange has been great - fun as well as productive. Go for it! I have another friend who also has her own group of families exchanging work. We stole the idea from them. The main ingredient for success is a group of people you get along with really well. It helps to live not too far away from each other, I think.
    Candy

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  3. I love your post. Love getting to know you. Thank you!

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