Monday, June 30, 2014
The Magic Treatment
Today is the final day of the blog challenge and since the prompt today doesn't speak to me AND I just figured out that this post from day 17 never got published I will instead be responding to the day 17 prompt: invent the perfect imaginary treatment for your diagnosis. What would it look like? What would it do? How would it work
I would want 3 simple things from the perfect imaginary treatment.
1. simple
2. cheap
3. no side effects
I think it would have to be a pill. Isn't that what we all want-a cheap pill that will solve our health problems without any crazy side effects? That way we can go about our lives as we please, free from all this, pacing, dietary changes, retreating to a dark room, meditating, worrying about getting just the right amount of sleep, avoiding the wide world of triggers...
This pill needs to be a total preventative. I expect that as long as I faithfully take my pill each and every day, it will prevent not only the pain but all of the symptoms of my chronic migraines and fibromyalgia. I can be totally reasonable, I'll be okay with taking one pill for the chronic migraines and one for the fibromyalgia.
As nice as that would be I think there are probably some benefits to the changes I've made in my life in an effort to better manage my symptoms. I'm eating healthier than I ever have before. I'm making sleep a priority. I'm meditating, or at least trying to. I've learned to say no. I enjoy more small moments than I did before because I've slowed down. All of this makes me wonder if a magic pill would really be the best for me. Maybe not but if it was available I would certainly take it.
Saturday, June 28, 2014
A New Kind of Dream for a Migraineur #MHAMBC
The day 28 prompt is: Maruki Marukami said, "I dream. Sometimes I think that's the only thing I do." Action is what makes our dreams comes true, but there have been times when we all have been physically unable to act on something that means a great deal to us. Tell us your story.
My dreams are full of things I can't physically handle doing. The fact of the matter is that all of them require me being able to function normally so I guess that's the overriding dream - to NOT have to live with chronic migraines and fibromyalgia. Unfortunately, this is not an actionable dream. There is no cure so, short of a miracle, this is my life.
I've found that lingering on the dream of being normal, or accomplishing normal things, only brings me down. Over the past 8 years I've learned to focus on adjusting all my goals to fit my limitations. The dream is still there but it's now categorized with dreams like world peace or an end to global warming. You know the ones that we all wish would happen and hope would happen but don't believe will.
Does this mean I've given up? No, I promise you I have not given up. But life is a little easier to bear when each day is not filled with the constant, inevitable failures that result from trying to reach for something that my body is unable to handle. If I was blind I wouldn't spend all my time trying to enjoy beautiful landscapes, I would focus on figuring out how to adjust. I would learn new skills to help me function the best I could.
This is no different. My body is easily fatigued and always in pain (frequently debilitating pain), not to mention all the other symptoms. I wasted years unable to act on any of my dreams because all of my dreams were about doing stuff I couldn't do. No more.
I see it as my job to be the very best me I can be. Nobody else will ever be me - I'm the only one who can do it. This has to include my chronic pain, it's that big a part of my life.
Wednesday, June 25, 2014
Change, Fatigue, Migraines, Self Control and How it All Relates #MHAM
The day 25 prompt is about the following short video, which goes to bat for the "lazy" people who resist the change they dream of, and why they might not actually be lazy at all. What do you think about the intriguing research discussed here, and what do you think you would do if you'd participated in the study. Do you think this explains how you act when you're in the middle of a migraine attack.
What do I think about this research?
This research question is very interesting. Do we really just get so fatigued by exercising a little self control that we can't manage expending the energy required to make change? Honestly, I don't believe it's that simple. I have 4 big issues with what is going on here.
1. The study seems flawed because it doesn't take into account how practiced people are in self control. Self control is a learned skill that gets easier the more you do it, thus requiring less energy.
2. It doesn't take into account the feeling of frustration or of having been defeated that result from unfairly being asked to smell and look at cookies you can't eat at the same time you are asked to eat radishes of all things. No doubt those feelings impacted how willing the participants were to continue working on the puzzle.
3. It is a big leap to say that just because someone was too fatigued to complete an impossible task after exercising a little self control, that it also explains why change is so hard.
4. Change IS hard, very hard, BUT for reasons much more complicated than this simple experiment suggests.
I do agree that laziness isn't the thing that stops people from changing. And I do think think self control is related to change in that it takes a great deal of self control to change. Part of why it is so hard to change has got to be attributed to a culture that doesn't seem to understand the extraordinary value of delayed gratification and certainly doesn't promote it. We love things instant, fast, now. But it isn't good to get when we want when we want it. It devalues the things we want and it is the antithesis of self control. Everything is better when it requires effort and a period of waiting.
But even that is a simplification. In addition to self control we need support, motivation, dedication, a good plan with benchmarks along the way, access to resources, maybe some accountability, I bet temperament plays a role, and you have to be ready, etc. to make change successful. Seems to me the more of these you have the easier the change will be and fewer of them makes change more difficult.
Do I think the research relates to how I behave when I have a migraine?
In a way, yes. Fatigue and exhaustion are my constant companions. I spend much more time than the average healthy person doing what looks like relaxing - sitting in front of the TV, putting my feet up, etc. I bet to many outsiders, and certainly everyone who doesn't understand how chronic pain works, I look like a lazy person. Of course, I'm certainly not, but I don't have the energy to be active all day, or to do many of the things healthy people do. In order to function I have to pace myself and I have to rest throughout the day - sometimes all day depending on how bad the pain is. And what looks like relaxing is actually recovery or employing distraction as a means of coping with the pain and crap.
The similarities end there. I don't find change any harder or easier now that I'm living with more exhaustion and fatigue than before my migraines went chronic. In fact, I've made several big changes since then, many in an effort to live better with my chronic migraines and fibromyalgia and I've done so despite my fatigue and exhaustion. I've been able to make those changes because I have a supportive husband, some resources, have made making these changes a priority in my life, and I'm both well practiced in and get real pleasure from delayed gratification. It was part effort, part luck part timing.
Tuesday, June 24, 2014
How I Manage to Hold One During Times of Despair #MHAMBC
The day 24 prompt is to watch this Wilson Phillips video, then write on: when it seems migraines have dragged us down into the pits of despair, changing our lives until we barely recognize ourselves, what do we do to hold on and keep fighting for your dream of better health.
It's been 8 years now since my migraines went chronic. While I've gotten better at living with both my chronic migraines and fibromyalgia, I still struggle with it. I have periods of time when I'm angry about what has happened, and periods of time when I'm just very sad about it. Then there are times when I'm just so incredibly exhausted not only from all the taxing symptoms but from the constant struggle to manage the shit storm each and every day, while trying to stay positive. This requires a surprising amount of effort.
Over the years I've wondered on more than one occasion if I had the strength to keep up this fight. Time and time again the answer has been yes. What I've learned is that these feelings of being overwhelmed by my illnesses is a myth I tell myself when I'm going through a tough time. There is a natural ebb and flow to my emotions. Sometimes I feel strong and sometimes I don't. But when it comes down to it, all evidence points to me being strong.
During those times when I'm not feeling strong I remind myself that it is not true and that this feeling will pass. I know that if I hold on, it is only a matter of time before I feel strong again. Surprisingly enough, the things I tell myself seem to have a real impact. I remind myself of everything I've been through and how I've managed to get up every day for more than 8 long years and fight the good fight. I look back on the projects I've accomplished and the fun that I've managed to have despite my chronic migraines and fibromyalgia. It hasn't been easy, not by a long shot, but I've done it. I'm still here. Even if my health never improves in a meaningful way I know I am capable of not only making it through but that I can still find value in my life. I am proud of me.
In addition to my self-talk I've also had other help in getting through times of despair. Hubby has been incredibly supportive through it all. He sees value in me so even when I'm struggling to feel it, I can gain some strength from his affirmations. Committing to projects has also made a big difference. Simply having something to direct my energies toward and then having accomplishments to hold onto has been an effective tool, instilling a sense of satisfaction similar to what I felt when I was able to work.
Monday, June 23, 2014
Body Language and Health Care #MHAMBC
Wow, day 23 already. Since I was unable to get online during my vacation and missed the past 5 days of the blogging challenge, I wanted to go back and follow one of the missed prompts. We were to watch this Ted Talks by Amy Cuddy about how our own body language impacts how we feel.
Beyond the obvious applications that Amy lays out for how doing some simple "power poses" can impact our hormones and help trick us into internalizing a feeling of power, I can't help but feel like this could help those of us dealing with chronic pain.
Over the past 8 years of living with chronic migraines and fibromyalgia, I've noticed a number of changes in how I carry myself physically. It seems a pretty natural reaction to pain, nausea and multiple sensitivities; not to mention the loss of my ability to hold a job and the subsequent career and social derailment. These days my posture sucks. In an effort minimize the impact of a world full of noises, smells, movements and lights that trigger and exasperate my symptoms I've made myself very small indeed. Basically, all of my non-verbals reflect how terrible I feel.
For me, the ideal application for this technique would seem to be in the doctor's office. Generally speaking, doctor offices are full of painful stimuli and you have to go when you are scheduled no matter how bad you are feeling. Once there, you have to fill out paperwork while sitting in a small waiting room chair surrounded by others - forcing you to kind of hunch over and keep those arms close all while trying to manage your purse and shield your eyes from the harsh lights. Seems like I always end up waiting with at least one person who has small out-of-control child(ren) who assault my ears with their din. Then a nurse will put you in a room, ask a bunch of questions, put you on exam table and take your vitals. You are left again to wait for the doctor for some unknown amount of time. When they finally show up you rarely get much of their attention. Many now carry a laptop that they spend 90% of their time looking at and furiously typing on. They ask questions but only listen to the first 2 or 3 words before you can see them check out. The entire process, intentional or not, serves to highlight the power differential of the doctor/patient relationship.
Unfortunately, the power these doctors hold to assist or hinder your access to proper medical care, prescriptions, testing, treatments, and the cost/coverage of said care is absolute. They have very real power over our lives. They know it and we know it. Over the years, I've seen how it impacts my ability to speak up when I disagree with the direction things are going, or to question his/her findings or treatment plan. I am often scared of being labeled as non-compliant, difficult, over-reactive, or that I won't be believed and taken seriously. You know the old - "it's all in your head." As the patient I have real value and could be a great partner in my own healthcare, if only the doctors could see it.
So the question is, can performing these power poses, while waiting in the exam room for the doctor to arrive, help us to fake that feeling of power enough to convince the doctors to take what we say more seriously? Can we overcome the dehumanizing effects of our healthcare system when we are in front of a single human doctor? Can this better our interactions with our doctors?
I'm going to give it a try.
Sunday, June 15, 2014
According to Fleetwood Mac... #MHAMBC
The day 15 prompt is to watch this video for the song Dreams by Fleetwood Mac and write about it.
Full disclosure here, I LOVE Fleetwood Mac...love them. Their music is best suited for individual interpretation, I don't even want to get into all the thoughts and emotions it evokes in me. Instead I hope that you will give it a listen and let it take you on your own emotional journey.
Saturday, June 14, 2014
Migraines As Monsters #MHAMBC
Day 14 and I'm reaching for an alternate prompt: Describe your migraine monster.
The Google Images search I just did for a great monster to represent my migraines was an enlightening endeavor. Who knew there was such a range of monsters? There are cute monsters, scary monsters, gruesome monsters, funny monsters and even some sad monsters. What surprised me most was how much I connected with all of them. My migraines can be like all these monsters...
From the movie Pan's Labyrinth source: fanpop.com |
From Monsters Inc. source: disney-clipart.com |
Herman Munster Source: en.wikipedia.org |
From Star Wars source: fanpop.com |
The clown from the movie IT. Source: theranking.com |
You get the idea. All monsters are like my migraines.
Friday, June 13, 2014
Wish Everyone Knew This About Migraines #MHAMBC
The day 13 prompt is to watch and respond to the following video clip:
What I love about this video is that it highlights the wide variety of experiences and the unexpected consequences for those of us living with migraines. As someone disabled by chronic migraines I've been surprised and endlessly frustrated by the severe lack of understanding about the disease despite how common it is, even among those of us who have it.
Everyone thinks they know about migraines because everyone either knows someone who has them or they have had some themselves. Trying to educate people about something they think they already understand is difficult. As difficult as it is to do person to person, it is so much more difficult to re-educate our society. Unfortunately, as long as the general public views migraines as "just a headache" it will never be understood and never be prioritized financially.
I wish migraines could get the kind of PR breast cancer does. Imagine if we could raise that kind of money and that level of awareness and participation...
Wednesday, June 11, 2014
I Was That Broken-Winged Bird #MHAMBC
The day 11 prompt is to respond to the following quote: "Hold fast to dreams, for if dreams die, life is a broken-winged bird that cannot fly." Langston Hughes
So true. We all need something to look toward, to be excited about, to challenge ourselves and to direct our efforts. Our humanness needs dreams. The startling disruption of the onset of chronic migraines in my life has highlighted the importance of dreams and at the same time has made hanging onto them more challenging.
I've always considered myself a dreamer but that was an easy thing for me to be as young, energetic, episodic migraineur. Interestingly, I was so caught up in the excitement about and focus on my dreams that it took me many months to realize just how out of control my migraines were getting. In those early months when my body was transitioning from episodic to chronic I was aware of each migraine (they are impossible to ignore) but wasn't putting any thought into the big picture, instead chalking it up to being overly busy, extra stressed and just one of those things. It wasn't until I found myself missing more and more work, spending more and more time in the ER and finally getting that prescription of Imitrex from my doctor (who had been offering it to me for a couple years), that I realized something was going terribly wrong.
Life needed to be put on hold. The only focus was to figure out what went wrong, fix it and return to the old dreams, to my life. I'm a little embarrassed to say just how long it took me to realize and admit to myself there was no way to figure out what went wrong and, more importantly, no way to fix it. During those years I was that broken-winged bird. I wasn't having any success in my efforts to decrease my migraines, I wasn't exercising, I wasn't doing much of anything but managing doctor appointment, trying all kinds of medications, dealing with side effects and just being miserable. All I had was a myriad of symptoms, fear and my loving hubby.
It wasn't until I was ready to admit that I couldn't solve this problem that I was able to move forward. I dreamed about recapturing portion of myself and living the best I could with these chronic migraines and fibromyalgia. I started exercising, setting goals, working on projects and really trying to adjust my life in an effort to to increase my ability to function despite my chronic pain. I moved from making treatment and lifestyle decisions out of desperation, to making smarter more strategic decisions. As a result I am living better today than I was. My chronic migraines have not improved but my emotional state is much improved and that has been great. I am a dreamer once again.
I'm so thankful for my wonderful hubby who stood by me and loved me through it all. I don't know how I would have made it this far without him. No words exist to accurately express my appreciation for all he has done.
Monday, June 9, 2014
June Headache Disorder & Migraine Blog Carnival
Welcome to the June 2014 Headache Disorders & Migraine Blog Carnival.
In honor of Headache and Migraine Awareness Month the theme is: A World Without Headache and Migraine: How Would This Change Your Life?
Here is what our participants had to say on the matter:
Casey Russel-Graham shared What If..., posted over at Living With The Beast.
Jamie M. Sanders shared Migraine and Headache Awareness Month #1: A Dream Come True, posted over at The Migraine Diva.
Julie Ryan shared June is Migraine Awareness Month, posted over at Counting My Spoons.
Elizabeth Roberts-Zibbel shared I Don't Care What They Say, I Can't Live in a World Without Headache, posted over at Lady Migraine.
Want to plan ahead for the July edition?
The Theme for July is: Share your favorite blog post written by you or anyone else for last month's 2014 Migraine and Headache Awareness Month Blogging Challenge. NOTE: off-topic submissions will not be accepted.
Teri Roberts will be hosting at AHMA Blog,
In honor of Headache and Migraine Awareness Month the theme is: A World Without Headache and Migraine: How Would This Change Your Life?
Here is what our participants had to say on the matter:
Casey Russel-Graham shared What If..., posted over at Living With The Beast.
Jamie M. Sanders shared Migraine and Headache Awareness Month #1: A Dream Come True, posted over at The Migraine Diva.
Julie Ryan shared June is Migraine Awareness Month, posted over at Counting My Spoons.
Elizabeth Roberts-Zibbel shared I Don't Care What They Say, I Can't Live in a World Without Headache, posted over at Lady Migraine.
Want to plan ahead for the July edition?
The Theme for July is: Share your favorite blog post written by you or anyone else for last month's 2014 Migraine and Headache Awareness Month Blogging Challenge. NOTE: off-topic submissions will not be accepted.
Teri Roberts will be hosting at AHMA Blog,
Sunday, June 8, 2014
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.
Saturday, June 7, 2014
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.
Thursday, June 5, 2014
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!
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!
Wednesday, June 4, 2014
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.
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.
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.
Tuesday, June 3, 2014
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.
Monday, June 2, 2014
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.
Sunday, June 1, 2014
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.
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.
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