Saturday, July 13, 2013

Rewrite Your Story - Healing for the Migraine Sufferer

I am sitting in bed with a cup of coffee, a gluten free sugar cookie and a book, just pondering.  I'm working on some new artwork, trying to figure out what direction to go. I am creating some mixed media artbooks, and decided that I want to actually tell a story. Why not MY story? What IS my story?

My migraine doctor reminded me last week about how far I've come since I first saw her five years ago. At the time I was severely disabled by my migraines and was struggling with depression, fear and hopelessness. I don't share a lot of the really hard stuff with a lot of people.  I don't want to be all "woa is me."  I do feel fortunate.  I am also a very ambitions (and proud) person and am not exactly proud of being disabled.  Being unable to work outside the home has been extremely emotionally difficult for me for a multitude of reasons.  I don't want to talk about the emotional struggles of pain disorders today, but I'd like to at some point.  Today, I just want to share what I was thinking as I was sitting here. 

I was pondering my story, and the stories that we believe about ourselves. What would be the moral of my story?  I guess it is to trust yourself, hang on to hope, believe what is healthy for you to believe, figure out what you need to do to make your life the way you want it and never give up and NEVER believe the negative, ugly things that people tell you about your lot in life. 

A doctor told me once that I just had to accept that I get migraines and there is nothing I can do about it. This was very hurtful to me. Yes. It is true that I do have to accept that I have a migraine disorder and it IS my lot in life, but there is so much that I CAN do about it.  I don't get to choose a different body or life, but I do get to choose what I do with it.  Despite my doctor's ambivalence and that of many other doctors I have had the misfortune of seeing, I clung desperately to the belief that I do have the power to change my life and my story and I did it, and am doing it. I educated myself, learning about migraines, learning my triggers and avoiding them, and have implemented behaviors to raise my trigger threshold via both medical methods (profalactic medications, pfo closure,...) and natural ones (exercise, nutrition, meditation, biofeedback, pt and ot, affirmations, cognitive behavioral therapy, retraining the brain...)  

It really pains me to think about all the fellow migrainers out there with doctors that are not helpful, especially the ones that prescribe medications willy nilly, ones that actually cause rebound headaches. Mine previous doctors did, quite willy nilly in fact. It also pains me to think about the lack of emotional support and all the misinformation out there. When you have a constant headache, wading through a bunch of riff raff to find something accurate and helpful is not an easy thing to do. 

When I was looking for emotional support, fellowship and information along the way, I joined some online groups, but for the most part I found a lot of people who saw themselves as powerless victims, hopeless, helpless, completely out of control, and many who used the forums as opportunities to complain and gain sympathy. When someone offered suggestions, there were often reasons why that wouldn't work and why it was pointless to even try, or the suggestions were completely ignored. I made the mistake of giving my contact information to a young girl who was an energy leach with a voracious appetite.  She was a headache giver as well as a getter. She had no interest in making her life better. She gained her fulfillment from the sympathy she received from others, so getting migraines was giving her something that she wanted.  She wanted the victim/martyr role. 

On another forum, I was attacked for posting information from my migraine doctor. I even attached links to pubmed documents with evidence supporting my doctor's claims, but instead of reading the links to check my facts, I was told by a faux doctor that I knew nothing because the hypothalamus is not a gland. 

I call him a faux doctor because any doctor should know that it actually is part of both the neurological system and the endocrine system, and even for the lay person a few seconds on google is all that is needed to find that information.  Here's a couple that I just found (expending almost no effort):

The hypothalamus is a gland in the brain that is the instigator of the migraine response, a painful neurovascular event, that is not well understood by most doctors, and not treated effectively without first understanding it.  We must learn about the hypothalamus and how to keep that gland "happy" so that we can feel better. The hypothalamus is the key to managing migraines, but it is a topic for another day.

A big part of my migraine healing process was managing my inner dialogue, and not just the constant chatter, the idealistic expectations of self-perfection and the cup-half-empty stuff.  I also had to ask myself, "What if I had no more migraines, what then? Would I lose something? Is there something I gain by having them? Is it actually something I want?  Is being able to use the excuse, 'I can't. I have a headache.' some thing that is worth the headache?"  No, it is not. 

Then I made as list of what I would have to do to control them.  It was a very long list and I keep adding things, but I've been accomplishing things on that list too and my headaches have gotten a lot better.  Sometimes we expect others (like doctors) to change our lives for us, but WE have more power to do that in most cases.  The pfo closure did make a huge difference for me.  I estimate about a 40-50% reduction in overall pain...I don't mean that I have no headache 50% of the time.  I mean that my pain intensity level is reduced by at least 40%.  This means that I can do more of the things that I need to do to raise my threshold and make my hypothalamus more happy.  One of those things is physical exercise. I was too sick to do it and now I can walk daily and get my body in shape, which is very important in preventing migraines. 

So I am working on my list; and I've tried more things.  I don't have the headaches under control, but I've made huge improvements.  I'm so glad I didn't believe that doctor who said I could do nothing about it, and the other doctor that said I was the most unlucky individual he's met.  What a horrible thing to say to someone, and I call BULLSHIT on them both.  BULLSHIT!  I am so so so blessed; blessed to have finally found doctors who help, blessed to find resources to teach me, blessed to have my art and many healthy outlets to deal with the emotional struggles, blessed to have a sharp, problem-solver's mind and blessed to find people who care about me and support my healing process, even though they aren't the people I had hoped would support me.  I learned to nurture those relationships that were healthy for me and let go of nurturing and trying to change those that weren't. 

Our mindsets, thought processes, beliefs, reactions, relationships,stories...are all things that can heal us or make us sick and these are all things that WE HAVE THE POWER TO CREATE OR CHANGE.  Don't ever give away your power over your life or cling to stories that make you miserable.  I'm still not sure what I'm going to do with my book, but I want it to be about the story of my life that is beautiful - the one about me clinging to hope, bravely fighting the battles and winning the war over illness.