Chronic Migraines and Having Fun

(Originally Posted on 5 July 2012 under “Zenandtheartofmanagingmigrainedisease.wordpress.com”)

“Fun” is not a word I use often.  In fact I don’t remember the last time I used the word “fun”, as in “I had fun today,” or “Let’s go have some fun with friends.”  Even as I type the word, it sounds peculiar, and lacks meaning.  When I was a kid and learning new words, sometimes I would say them over and over because I liked the way they sounded or how the syllables would roll off my tongue and create some other image that fascinated me. “Bodacious” was one of them.  Also “persnickity”, and the common “clump”. I kept adding to the list. I would go to my room and repeat the list from top to bottom. The list grew from one page, to two, to three, and over time filled the black and white composition book I was using. I began another book. If I repeated just one word over and over, which I did often, soon it would become meaningless, a combination of letters put together, and the faster I went the more it sounded like “gibberish” (also on the list). I then had to leave the word for a while or its fascination would leave. I might even have to erase it from the list forever.  Fun was never on the list.

I visited a close friend for a couple of weeks last summer.  She is getting on in years and I try to stay in touch, to make sure she is doing well, and is managing.  Not that I need to worry.  She has a large family around her, and plenty of people to support her – better than I can with all my migraines and daily difficulties just managing. After the first few days I was there, and I had related something that happened to me, she looked at me squarely, and told me I had to stop talking about things that were upsetting.  She just could not hear it anymore. I was a bit taken aback, but certainly understood.  Being with a chronic migraineur is not easy. There are so many ups and downs during the day. Then she added something that left me speechless.

“I don’t know what it is. I think you were born without the ‘happy gene’. Your life seems so difficult. You don’t have any fun. But I just cannot hear it anymore.”

Yes, my life had been difficult. I had told her much about it, more than just the migraines, and too much for anyone else to know. I felt quite bad that I had somehow overstepped the boundary between us that drove her to make such a definitive statement.  I went upstairs to my room, closed the door, and lay down. Then I burst into tears. Always able to make others laugh with my sunny personality, I asked myself  “What had happened  that this wonderful, generous person I loved and cherished would think, and need to say to me, I had no ‘happy gene’? I was sad, and then very angry.  Angry that she said that to me. Angry at myself for talking about something no one except another migraineur could really understand, or tolerate. Intolerably angry at the disease that had turned me into someone unrecognizable. Someone with whom no one wanted to be. I was ready to pack up and go home. I made a few calls. One to my therapist who calmed me down, and stopped my packing. One to an old friend whom I knew would listen and say nothing, which is what I needed. And one to her daughter to make sure we would be walking early the next morning.

The next morning when I rose at 5:45 am for my walking date at 6:00am, the “fun” thing was still on my mind. As she and I did our 6 mile circle, I brought up the subject, and we discussed it for a bit. I knew she would give me some good perspective, and she did. I told her I would do everything I could to make the rest my time there as cheery as possible.

I walked every day, did everything I could to help around the house, and kept my pain to myself. I would say “I’m fine” even if I wasn’t. Any migraine pain I had while I was there I kept to myself. I realized that there are people who just cannot delve the depths with you. Those dives are best left to professionals or others who share, or are willing to share your specific maladies. Before I left, I did say, in as loving a way as I could manage, that having migraines was a disease just like any other disease. It was genetic and I did not choose to have it. There was no cure, and whether she liked it or not it was something she would have to accept as a reality. I could not  “choose to not have migraines”, but I would surely not talk to her about them if it upset her. That was the last thing I wanted to do. I gave her a big bear hug, and I could see from the look on her face that she did not believe what I had just told her. So I smiled my biggest smile from ear to ear, and went on to something else.

I called to arrange a trip this fall to see her, and she asked that I come only one week this time, two weeks was just too much for her. I tried not to take this personally, but was feeling like my friend and I had reached a crossroads, and were parting in some essential way. But she is getting on in years, and is finding her own way of “pacing herself” just as I am.

I cannot express how many events, trips, plans, parties I have missed or had to cancel because of my migraines. I don’t make plans anymore. It has turned me into a hermit. How do I change the pattern thrust upon my by a disease I never asked for, that has gotten worse over time instead of disappearing? I am left looking for the me that used to enjoy everything. How can I get her back?

One day at a time is all I can manage at the moment. Pacing myself so I don’t use my entire book of tickets for a good time in one day. Not talking to anyone about migraines! This is difficult. Should I want to do something, I have to make a plan. Making a plan requires being there. Being there requires “no migraine”.  You get the picture.

I resolved to do one pleasurable thing every day, for at least an hour. That is on my front door.  “Have you done something you love today? If not, turn around, take your coat off, and decide what to do before you leave.”  It is a reminder of my committment, and although not always kept, reminds me to keep this a constant part of each day.

Remember to smile. That is a little note I keep in my bag because I need reminding.

Am I having fun yet?  Have I found my happy gene? No, but I am looking. I’m looking every day, and some days finding one or even both.  Even though these words never made it into my list, perhaps I can dig out those old primers, and add them, or better start a new list. The new list will not be created from mellifluous words that fascinated my childhood world. It will have words I can live and use in my life as a chronic migraineur, now, in my present as it is, not as I would like it to be. Then perhaps I can begin to rejoin other people’s lives, finding the words on my list that matches theirs, and start to regain my “fun” life again.

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