Migraine Awareness Month 26: "From The Outside Looking In"

AwarenessMonth2012BC2Good morning, and welcome to day 26 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #26: "From The Outside Looking In."
Write about what you think your family, friends and others think a day in life, a day with Migraine disease is like.

From the outside looking in...

Most of my family and friends are only vaguely aware of my job as a patient educator and advocate.  It might surprise you to know that the majority of them don’t even know where I work other than ‘online’. 

I have never asked them what they think my days are like, but they occasionally give me a little insight with the things they say.

Sadly, some of my friends think that I spend all day long visiting Dr Google, obsessing over my health conditions.  In reality this couldn’t be further from the truth.  Most of my time is spent either writing, or helping other patients online.  Most of these people think that spending time online must make me feel worse, when in reality the opposite is true.  Helping others gives me purpose and keeps me concentrating on everything but my pain, so I can often be found even working while in bed in the dark, iPad on my lap.  I stop for the day only when a Migraine is completely out of control. 

A few relatives think I waste my time each day in front of a television eating bonbons.  I wouldn’t know a bonbon if it stood up and introduced itself to me.  Although a radio or the television is often on for background noise to drown out my tinnitus (ringing ears) I rarely watch TV unless I happen to be passing through the room at an especially interesting time.  I average approximately 12 hrs a day working as an educator/advocate.  It’s true that part of this time is my job.  However, the vast majority of it is volunteer.  Patients are my priority.  Even with those numbers, I still feel that I let some patients down because there just aren’t enough hours in the day.  I do my best and hope they see that.

A few friends and relatives think I waste my time on useless or frivolous sights such as Facebook and they see no purpose in it.  The reality is that I visit many online social media platforms, participating in too many of them to really count.  Sometimes I ask questions myself because I am always learning, but usually my time is spent helping others who are asking questions or looking for support.  I also keep in touch with other patients through these social media platforms, and we are often found sharing prayer requests and comfort for each other.  Hardly a waste of time in my book. 

I take my meds when I’m supposed to.  I distract myself from my pain every day.  I take out a little time each day to concentrate on things that cause me to pause with wonder and smile.  I enjoy the time I spend with my dogs and cat, and although my heart aches for the interaction, I enjoy watching the daily activities of the horses that surround my home.  I plan to go somewhere at least once a week because this makes me feel like my life is a little more regular.  I struggle to be as normal as I possibly can, with a very *not normal* situation. 

It’s my fault that my family and friends aren’t more aware of how I spend my days as a Migraineur because I could just talk about what I do and how I spend my time, but nobody is asking questions and I don’t feel the need to sit them down and bore them with the details.  I think they don’t ask questions because the reality is that they don’t want to know the answers.  They know I live in pain and that makes them feel uncomfortable.  They don’t know how to talk to me anymore.  Mostly, they are uninterested and busy with their own lives.  That happens with all of us from time to time.

My hubs and kids know how I spend my time because they live (or used to) with me each day.  My kids are Migraineurs too, so they understand from that perspective.  My world became very small when I got sick and that’s okay.  It’s okay that they are the only ones who “get me”  because they are the ones who matter most.  And the most important part of this equation is I am blessed that they DO understand and know me, and I am not alone.

 

~Ellen


Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."

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Today's prompt is:

Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."  Which role fits you and why?

Although I would prefer that none of these three categories exist and we all work equally within a community, I have found that in practice, it rarely works this way.  Those who know me often hear me say “The cream eventually rises to the top.”  Given enough time, every community member finds the spot he/she is most comfortable. 

 As a result, two of these categories fit me I’m afraid – Lead, and Follow.  Although I’m not much of a get out of the way anymore, I do like to be an Indian when I can, so from that perspective I even fit *get out of the way*.

As a kid, I was the painfully shy, quiet one that didn’t want to stick out.  I loved being a get out of the way'er because there was less stress and it was easier to blend in that role.  When in grade school, I began doing art work that was getting noticed.  It was hard to stay in that get out of the way role after that, no matter how hard I tried.

By the time I was giving riding lessons and training horses, I had left the get out of the way role behind.  Get out of the way's don’t make good teachers, and they make lousy animal trainers.  Although that was where I was most comfortable, it wasn’t really where I belonged anymore.  It took a long time to come to terms with that and learn how to be comfortable as a leader.

When I first began helping other patients, I wanted to be a get out of the way'er.  I wanted to blend in and I stayed anonymous for a very long time trying to do that.  However, because I had so many personal experiences to share, I ended up often finding myself in leadership roles in my online communities, despite my best efforts.  I just couldn’t stand by watching people suffer when I had some of the answers to their questions and problems, and those skills to be a leader. 

Despite the fact that every one of these roles is vitally important to a community, it’s hard being in leadership roles! 

In the animal kingdom, most groups function on a hierarchal principle.  Typically there are alphas (leaders) and the leader’s best friends or number two’s (followers).  Then there is everyone else (get out of the way'ers).  Among the *everyone else* group there will be constant jockeying for higher positions and better status, because in the animal kingdom, this means a better chance at survival. 

Every once in a while, someone wants the leadership position and starts a fight to get it.  This is understandable in animal societies, but I like to think that in human society, with our ability to communicate verbally and work together with purpose and forethought, this jockeying for position should be unnecessary.

I have never felt that, in an ideal world, online communities should be run this way – we are all patients and all have similar experiences to share.  We gain or lose as a group depending on whether our groups are successful in what they are trying to accomplish.  The bottom line is, we are all valuable, and every time someone leaves a community, we are all the poorer for it.  There are all times when we should be leaders, followers, and times when we need to be getting out of the way so we can get things done. 

Have you stepped up into a leadership role within the Migraine community?  Do you consider yourself someone who is more comfortable following, or do you participate actively and the *get out of my way* position fits you best?  How do you think you would feel if you were thrust into another position?  Why?  We hope you'll let us know in your comments below...

~Ellen

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

 


Migraine Awareness Month #12 "Let's Do The Monster Mash!"

AwarenessMonth2012BC2Today's prompt for the National Migraine Awareness Month is: 

Migraine Awareness Month #12 "Let's Do The Monster Mash!" Choose a movie monster that reminds you of your Migraines and tell us why.

While the song "The Monster Mash" is fun to listen and dance to, when I think of my Migraines I think of something more sinister. 

I call them The Beast

There are a lot of reasons why, but because I tend to think about them that way makes this post an easy one for me.  Two 1980's movie monsters together fit the bill here...

1.   Kurt Russell stars in an old creature feature called "The Thing".  In this horror flick, Mr. Russell's character is in an isolated Antarctic research facility when a friendly dog infected with an alien life form is chased into their compound.  The alien life form has taken over the dog, cell by cell replicating it and it actually only appears to be a dog.  When the dog is alone with the facility's other sled dogs, it begins killing and replicating the bodies of the dogs.  Soon, one by one, the life form perfectly takes over members of the crew.  No one trusts anyone, and for good reason.

When a Migraine is hitting me, I feel like that life form has taken me over.  I have to try very hard to remember who I am and act like me instead of acting out like my head and body makes me want to.  I don't want to attack those who are closest to me.  I don't want to hurt them.  But the nature of the beast in my brain makes controlling this really tough.

2.   The movie monster I think overall represents my Migraine beast the most comes from a series of movies that began with the film "Alien" starring Sigourney Weaver. 

If you're one of the 10 people on earth that haven't seen one of these, in this film the crew of a space ship goes to an asteroid and finds a large ship filled with eggs.  When a crew member comes near, the egg opens and a "face hugger" leaps out and attaches itself to his helmet. When he is found, the face hugger has used acid and eaten its way through the mask and has tightly attached itself to the crewman's face and neck.  It is planting an alien larvae down the throat and in the crewmember's stomach.   While at dinner, the matured larvae grows and while the crew holds the crew member, down it bursts out of his torso, killing him in agony.

Put one of these things inside my head, and you've about got what a Migraine feels like - something alive and pissed off and completely beyond my control is inside my brain trying to violently split my head open to come bursting out near my eye.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

Ellen


Memories, Migraines, and a New Year

2012-175Here's hoping that this New Year's Day finds you happy and well, enjoying the day with no Migraine.

Yes, I do find myself with a Migraine today, despite the fact that I drank no champagne last night and got plenty of sleep. What can I say? The weather front moving in smacked me with a Migraine, and that's just the way it is.

In any case, I'm staring the year with a positive attitude because I simply refuse to do otherwise. I allowed myself a five-minute pity party, and now it's over. Continuing to be upset about having a Migraine today wouldn't accomplish anything positive. It would only make me feel worse, and it would SO be unfair to my husband. After all, today is our wedding anniversary!

Looking through our wedding pictures makes me wonder where time goes! Speaking of wedding pictures, I scanned one of them to share with you. Here we are, 26 years ago today...

Wedding010186That's our younger son, Marshall Brooks Robert on the left; me;
my husband, John; and our olderson, John Emry Robert

Tomorrow, I'm going to share my plans for 2012 with you. Today, I just wanted to post to wish you a very happy new year!

Live well,


 

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© Teri Robert, 2012
Last updated January 1, 2012.