Living Despite Chronic Migraines #MHAMBC

The Day 8 prompt is to relate the following quote to migraines: "It does not do well to dwell on dreams and forget to live." JK Rowlings

Seems to me you could replace dreams with most anything and the same would hold true. Dwelling is sort of like the mind being stuck on something and I just don't see how one can really live in the present while in such a state. Certainly dwelling on migraines is contrary to living life.

In the early years, after my episodic migraines went chronic, it was hard not to dwell on what was happening to me. Especially when there were a few months during which the migraine pain was constant. It was like the migraines had taken over my life and certainly dominated my thoughts. I didn't understand what was happening, I was scared and just in so much pain, every second of every day... What a dark place to be both physically and mentally. This is when I was still certain that I just needed to figure out what happened to cause this craziness, take care of it and return to living my life as it was before.

At some point you have to pick yourself up and figure out how to go on living anyway. After a while it became important to me that these migraines (and later the fibromyalgia) not define who I am. I knew I couldn't carry on as if everything was normal so basically I had to relearn how to live within the confines of my chronic pain. I had to work up the courage to go out in the world and still participate in activities. I had to figure out how to pace myself and make adjustments to everything I wanted to do in order to maximize my ability to function. I had to find light exercises that allowed me to move and stay fit without triggering a migraine or a big fibro-flare. I learned how to distract myself from the symptoms with comedy and projects. I've learned a great deal in the past 8 years about living with chronic migraines and fibromyalgia.

Yes, chronic pain does occupy my mind daily. Of course it does, there is not a single minute of the day that I am not in pain AND dealing with at least one other symptom. The difference now is that I have parameters to work within that allow my mind to think about my projects, domestic chores, philosophy, hubby, whatever. So long as pain is at a manageable level, my mind is easily occupied with many such things. When the pain reaches about an 8 out of 10, I have to step in and provide myself with mindless comedy or reruns of old shows to distract myself. Left unchecked, that kind of pain can easily take over my mind and invite in all kinds of panic and fear.

All the effort has been well worth it. My quality of life has improved over the years as I've gotten better at living with chronic pain. Much more work lay ahead as I continue on this journey. I hope in next couple of years is to reduce the frequency and severity of my pain and other symptoms through better pain management techniques.

If You Know One Person With Migraines...

The day 7 prompt is: Share what you've done to create change in how the world around you views migraine disease? What else would you do about this if you could?

I want the people around me to see that I am a whole person and not just the woman with all those migraines. To that end, I try to be a good example. I don't want to be seen as a victim or have people pity me so I try to be positive and leave the ugly details out when people ask me about how things are going. I try to find and point out the humor in my situation so people don't feel too weird around me. Still I want to be honest when they ask me how I'm doing. I may not give them the ugliest of details but I don't hide the fact that my migraines are still wildly out of control so I am honest about my limitations and the triggers around me. I try to stay very matter of fact when answering specific questions I receive and then try to steer the conversation to other matters.

The question is always in the back of my mind though: is this helping people to see that migraines don't define me or is it contributing to their disbelief? After all these years I'm still not sure but in my gut it feels like the most honest way to proceed. Ultimately, I don't know that anything I do or say is going to sway people to believe and understand or disbelieve and misunderstand. Depending on a person's bend, most any words or actions could be interpreted in a way that supports existing beliefs.

Sometimes I wonder if it would be helpful for my family and friends to have access to my blog. Maybe if I was just brave enough to let them really see behind the curtain all of them would get it... I see 2 things happening if I opened up my blog to all of them. One, I would have a panic attack and would stop sharing as openly as I do. Two, the people who really need to learn the facts are not likely to read more than one or two posts before getting bored and/or forgetting about it entirely. So my blog remains anonymous.

What I really wish everyone knew about migraines, besides the facts and statistics, is how varied the experience can be and how truly complicated it is. Most of what I say to others about my chronic migraines is in that vein.

When I used to work with adults with Alzheimer's Disease the saying was always, if you know someone with Alzheimer's then you known someone with Alzheimer's. There may be some hallmarks and some typical behaviors but it manifests in so many different ways you have to take each person as they are. I think the same thing is true with migraines. Just because you know someone with migraines doesn't mean you know migraines. We all just want to be heard, believed and seen as the individuals we are.

Last Call For Submission For The June Headache Disorders & Migraine Blog Carnival

Calling all headache and migraine bloggers out there. The deadline for submission is tomorrow (Friday June 6th) at midnight.

I'm going to be guest hosting the June Headache Disorder and Migraine Blog Carnival. In honor of headache and migraine awareness month the topic for the June carnival is "A World Without Headache and Migraine: How would this change your life?"

To participate simply email the link to your submission to me at migrainista@yahoo.com before the deadline (Friday June 6th). Please include the following information:

1. Your name as you would like it to appear in the carnival.
2. The title of the blog post you're submitting.
3. The url of the blog post you're submitting
4. the title of your blog.
5. the url of your blog.


The deadline for submissions is Midnight Friday June 6th.

The carnival will then be posted at http://migraine-ista.blogspot.com on Monday June 9th.

Happy writing!

Words of Wisdom from Maya Angelou #MHAMBC

Day 4 of the migraine awareness blog challenge is to watch/read a famous poem called "Still I Rise" by Maya Angelou and write about whatever it stirs within. I have included the YouTube link at the bottom of this post but personally found the music playing during her reading to be distracting so I've included the actual words below.

You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I'll rise.

Does my sassiness upset you?
Why are you beset with gloom?
'Cause I walk like I've got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I'll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

Does my haughtiness offend you?
Don't you take it awful hard
'Cause I laugh like I've got gold mines
Diggin' in my own back yard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I'll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I've got diamonds
At the meeting of my thighs?

Out of the huts of history's shame
I rise
Up from a past that's rooted in pain
I rise
I'm a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that's wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise. 

Maya Angelou

I love this poem because it reminds me just how common harsh judgement is. No matter what your situation, what decisions you are making, what you are doing with your life, people will always have something to say about it. Living with two invisible chronic pain conditions (chronic migraines and fibromyalgia) I am continually confronted with comments that show a lack of understanding or complete disbelief in what I'm going through.

There is nothing I can say to convince the nonbelievers, no way I can make the haters understand. No amount of words or tears can do justice to the experience of it all. My job is rise above it. I must find a way to let go of the snide jabs, disapproving looks, sarcastic, naive and misinformed comments. I must make the choices that are right for me because I am the only one with all the information. The only way for me to live my best is if I am not living to please other people.

This isn't an easy thing to do, especially for women. Thankfully, with every passing year it gets easier. 

What My Dreamland Gives Me #MHAMBC

The day 3 prompt is: Tell us about a recurrent dream and what it might say or mean to your diagnosis.

For me dreamland is a place of freedom and exploration. A place where I do all kinds of crazy things like fly and travel instantly from visiting with old friends to teaching a class of cats. A place where time and space are not linear and things don't usually make much sense. A place of emotion and pure possibilities. Dreamland is my respite from my chronic pain and all the accompanying symptoms. In fact there has been only one instance of me having a migraine in my dream.

I don't know that any of the handful of recurrent dreams have any application to what my chronic migraines and fibromyalgia are putting me through. At least not beyond the general sense of freedom I feel when dreaming. Wouldn't it be spectacular to be free from all the pain, nausea, brain fog, tingling, and such in real life?

As great as that would be, I have to say my dreamland is pretty darn vivid. I can hear, smell, see, feel and touch this world whenever I'm there. Even though dreamland can't exist in real life I'm extremely lucky to be able to visit there regularly. It is a place of inspiration. Most of all, it gives me hope that there is an existence well beyond what we are able to realize in this life.

The Dream of a Million #MHAM #MHAMBC

Day 2 and I'm already dipping into the alternate prompts: Life with migraines is tough - if you were the recipient of a million dollars, what would you do with it?

One million dollars - A windfall of that size would sure be a dream come true. In fact it would be my second biggest dream come true, behind only the magical healing of both my chronic migraines and fibromyalgia. The dream is to feel free of all the stress and worry that accompanies the complete derailment of my career and the subsequent plummeting of my earning potential after chronic pain hijacked my life. I've written about how financially vulnerable I feel because I'm not able to work before.

So what would we do with the money? Three very simple, very big things:
1. Pay off the house.
2. Install solar panels on the house.
3. Invest in our retirement.

We would do those three things and just continue on living our lives as we do now. We are not extravagant people and a million dollars is not exactly enough to make us set for life. To others, this plan may not sound as exciting as taking elaborate vacations or buying big expensive toys but feeling this kind financial cushion beneath us would be priceless. Money may not be the most important thing in life but none of us can deny it plays a vital role and can impact ALL other areas of our lives.

What I Would Do If I Didn't Have Chronic Migraines #MHAWBC #MHAM

The arrival of June marks the beginning of Migraine and Headache Awareness Month. I've decided to participate in the month long blog challenge. Between a short trip planned for later in the month and the unpredictable nature of my chronic migraines I likely won't be able to do one every day but I'll do as many as I can.

Day 1 Prompt: "What would you do if your dream of a totally pain and symptom free life came true?"

Simply put, I would do anything I wanted. Yeah, I know that isn't possible, I would still be limited by finances and time constraints the way most people are. Maybe it would be more accurate to say that I would do all the things I used to love to do that I either can't do or can't do much of anymore. I would:

- paint and draw
- much more reading
- see plays and musical productions
- fill my days with activities (domestic, philanthropic, artistic and fun activities)
- watch movies in the dark with hubby
- bump up the intensity of my workouts
- do more outside
- do more baking
- keep a cleaner house
- be more organized
- be active in the political process at the local level
- volunteer with a few organizations that I'm passionate about
- see more of my friends and family
- remove the dark, heavy brown curtains in our living space and replace them with more aesthetic ones
- take more pictures
- find a small black box theatre that does the kind of plays I love so I could stage manage or direct one show a year

The funny thing is, when I really started to think about all the things I would do, I realized a couple of the changes that have occurred are things I would NOT want to change back. These days, hubby and I live pretty simple lives and we like it that way. I would not want to return to the crazy busy days and super late nights of my early and mid twenties. There might be a period of time initially when I would want to just do as much as possible as quick as possible, a consequence of 8 years of being held back, but I bet things would eventually normalize.