I’m doing something slightly different during the month of June here at the Rainbow Elephant. I’m going to open up and share with my readers a very real and personal part of my life that has a direct correlation with much of the art I create. Anyone who has hung around with me much (or if you’ve read the “About My Scribbles” page, then you know that I have chronic migraine disease.
June is Migraine and Headache Awareness Month. And I’ve decided to take up the blog challenge issued by FightingHeadacheDisorders.com. The challenge is to use their daily prompt to blog about something to help unmask the mystery of chronic headache disorders. Honestly speaking – I will be writing some of my posts all at one time rather than in real daily time. That’s because I never have a month, nor even a week when a migraine or a string of migraine attacks don’t debilitate me to where I can’t sit at the computer and type.
Hidden Behind the Mask
Let the games begin! The first prompt of the month is: Phantom of the Opera: What do you hide behind your Migraine/Headache Disorders mask? What do you let people see?
I’ve shared in my blog postings before how I will sometimes hide things in my drawings that mirror thoughts in my head. I know as I’m accomplishing the art piece that I’m using a certain color to represent a thought or I’m using particular elements that represent something different than they appear to be. These are my little secrets, typically only known/recognized by me. About 75% of the time that I’m creating – I’m using the artful process as therapy for me. Many times it’s specifically for helping me to manage my pain. And periodically I’ll create art that is a self expression of my experiences with Migraine Disease.
If you’ve ever taken a look at a collection of Migraine Art you’ve probably seen drawings, paintings, sculptures, photography and other creative pieces that show the very real experience of either the extreme pain or the Aura’s associated with migraine. None of my migraine art represents visual aura’s, because I don’t get visual auras. However my migraine art does express the pain factor as well as other migraine experiences. And yes – I usually disguise the pain in some way that makes it look…. um…… ah…… pretty? By that I mean that most of my migraine art doesn’t show lightening bolt’s striking an eye (even though that’s the pain experienced), or a vice squishing the skull, or someone in the shadows holding their head, etc. These traditional migraine art images show in a rather realistic way what the migrainuer is experiencing. I’ve done my fair share of these pieces tainted with dark thoughts, pain, and sadness.
Pretty Migraine Art?
However, I usually use bright colors, light spaces, whimsical shapes, and sometimes humor to express my migraine experiences. There’s absolutely nothing about chronic migraines that is fun, cheerful or even light hearted…. well except the irony of things once in a while. But even then the “humor” is subtle and not realized when you’re in the midst of a hellish migraine attack. I create migraine art with these unusual creative twists to them specifically to offer the viewer a chance to smile when they see the art. Specifically to “hide” the migraine part of the art. The disease exists in my art as invisibly as it does in the lives of so many people who live with migraine.
Elimental – 12/2011
Hiding the Bad Stuff
My drawing titled Elimental represents the technicolor vomit I deal with on a fairly regular basis. Turn the picture clockwise and you’ll clearly understand how it resembles the “tossing of the cookies” event hidden behind the closed bathroom door of many a migraineur. This is something that we don’t typically share with others as it’s …. well…… it’s just gross and not a pleasant conversation starter. It’s one of those things we keep hidden behind the mask. I venture to say that not too many of your friends who have migraine open up enough to tell you how many times they puke from a migraine attack. Trust me though – it happens. And for some of us it happens often.
There’s a great deal more than little messages in my art that I hide behind the mask. One thing I hide often is how much it affects me on any given day. If I’m sharing my information with a non-clinical person I make statements that minimize my condition. I admit the reason that I do this is primarily so that I’m not perceived as a whiner, a party pooper, a drama queeen, or someone who likes sympathy.
Even as it is sometimes an all-consuming thing to me – I try not to push my disease onto others by moaning or complaining to them about it’s current status. Even when I’m feeling at my worst if someone asks me, “how are you doing?” I’ll come back with something like, “well I’m not at my best at the moment.” When really what I’m thinking is, “I feel like crap, please go far, far away from me!” Although it would be rude to say it like it really is sometimes – it would be perfectly acceptable for me to say, “I’m really struggling right now.” And still – I also hold that type of comment back to hide or shield others from the truth.
Support Systems Need the Good, Bad, and the Ugly
I do vent to close friends and family a little more truthfully. Yet even then am I brutally honest about what I’m experiencing. My husband gets frustrated with me if he asks how I’m doing and I come back with a, “I’m hanging in there” or “I’m managing okay”. He says that’s not helping him gage where I really am in the migraine cycle. So I’m getting a little better about being more accurate in describing where I am in my disease. And I’m trying to do it without “hiding behind” the pain. So now I’m starting to use the pain scale to tell hubby, “I’m at pain level 7 and moving towards a 10;” or “I’m down to about a 3 now, but I still can’t hold anything down on my tummy.” Even though I know it hurts him to hear the message, I’ve learned it’s better for us both for me not to hide behind the soft, unrevealing truth.
With my online friends, I sometimes mention my migraine issues, but more often I’ll simply mention in a blog post that I’ve been “struggling with health issues”. Let me just come clean here and now and tell you that when I make such comments here on my blog you can safely assume I’m referring to migraine pain or complications resulting from migraine treatments. And when I’m away from my blog for more than a day or two – the migraine related issues have been so bad that it’s kept me from feeling good enough to sit up at the keyboard.
Clearing the Air
The fact is that I deal with this condition every single day of my life in one way or another. I pretty much have to run my life around it. Whether it’s deciding what I can or cannot eat that day; how the weather may affect my ability to work another hour; debating on buying tickets to a show that I may have to cancel or wear earplugs through; asking my husband to insure there is absolutely no noise at all anywhere in the house; trying to hide from work peers that I’m about to vomit on their shoes; laying in the dark begging the pain to go away; reporting to the doctor how many side affects I’m dealing with using the current medication prescribed; reading up on the latest migraine theories; or trying to figure out how to get an art swap project accomplished and out the door on time in spite of fatigue that has overcome me again….. – almost every aspect of my life is affected by this REALLY STUPID and most aggravating migraine disease. I absolutely HATE IT!!!!!
Why I Hide Behind the Mask
There are many different chronic diseases and health conditions that people deal with. And when I meet such a person who vents about their condition, I listen with empathy and I do not view them as a complainer or a drama queen. And yet – I still feel a need to protect myself from others having this perception of me. I do not know if they have this view of me. I suppose I just fear that they may. So I fudge on telling them about my weaknesses associated with Migraine.
This concern is one of those habitual thoughts that float around in my head that I try to keep in check and not ponder on, as it has a very negative feel to it. For the most part, I’ve learned how to successfully counteract self-defeating thoughts that pop in unwelcome – with more appropriate positive thoughts for me to think about. Nevertheless, there are days when those types of dark-cloudy thoughts linger more than I wish for them to. And how people may perceive me as a sickly person is one of those buggers that likes to re-appear often.
I Supported the Stigmas
I know that there is a very real foundation for me to have this thought come to the forefront of my mind periodically. There are stigma’s that go along with invisible chronic illnesses – including Migraine. One of the most prominent ones that I’ve been the brunt of is how people question the validity of or the degree of pain and disability I experience during an attack. I can’t really blame folks too much for not understanding the severity of a migraine. After all – for years people just thought of them as a bad headache. It’s only been in the last 10 years or so that even the medical society has begun to understand the magnitude of this illness.
I have to accept part of the blame for this Stigma. Because I am not always openly honest about my condition to the friends and family around me – they don’t know how much it debilitates me. I know that their expectations of me are higher than I can sometimes reach, just because I didn’t honestly tell them, “I can’t” or “I shouldn’t” do such and such. Instead I’m likely to press on and attempt to accomplish the task. Whether I meet the goal or not – I’ve wasted precious energy I should have been using to take better care of myself. Sometimes I’ve caused myself more pain or major set backs while trying to do something, I knew beyond a shadow of a doubt, that I should not have been doing while dealing with migraine symptoms.
By making these mistakes – not speaking up and hiding behind the mask, I think I’ve been adding to the construction of some of the stigmas associated with migraine. Especially as those misnomers pertain to the very real issues chronic migraineurs deal with.
Here’s a video that Dr William B Young of the Jefferson Headache Center has put together to explain to folks how much chronic migraine affects individuals and to help unmask some of the Stigmas that go along with this illness. Although it’s a full 15-minute video I do hope you’ll take the time to watch it and maybe learn a little something you didn’t know before.
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Purple Ribbons and Then Some
The awareness ribbon color for Migraine and Headache Awareness is Purple. I’ll be wearing it openly this month and doing what I can to help educate folks about Migraine disease. I will also be posting blog entries about my migraine art/pain management therapies.
If you experience migraines, or know someone who does – please make an extra effort this month to help support breaking down the stigma’s and better understanding chronic headache disorders!
Hugs to you all!
~Cindy/PChip
There it was Again – Self Portrait of a Migraine Moment – 4/2013
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June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.
I have wept since logging on to this website. I have had chronic migraines for 22 years and headaches all my life. I remember sitting on the curb, age 4, waiting for my big brother to come home from school, rocking back and forth with pain and my mother telling me “don’t be a drama queen, children don’t get headaches”. I have felt so alone all my life and hidden my problem until the chronic migraines took over. Since then I have not been able to work, have felt such guilt; what am I doing wrong? what did I do to cause this? No one else I have ever met has this problem, it must be me. All interaction with doctors is anticdotal, there is nothing to measure or test and I have had doctors that simply do not believe me. I don’t have many friends (but those who are my friends are wonderful) because most people do not believe me. Thank you for letting me know I am not alone. It means alot. Gail
Oh Gail, You are not alone at all! I do not know what country you hail from. Here in the U.S.A. There are over 37 million people who have Migraine disease. You can read some of the stats at: http://migraine.com/migraine-statistics/
Also on that same site you can learn so very much about migraines. Maybe, just maybe you will be able to find something to help bring you some level of comfort. I do hope so!
As for feeling guilt. I realize it is easier said than done, because I’ve gone on my own guilt trips many a time, for so very many different reasons. Today I am feeling strong and self assured. So today I share with you encouragement to veer away from the guilt and accept your limitations and challenges as simply another part of who you are. And realize that you are a wonderful person. Guilt need not apply to something you have no control over, Miss Gail.
The migraine condition is a part of who you are, but you are not the disease!
Hugs to you and wishes for a pain-free day!
~ Cindy
This blog is beautiful and so open, thank you for sharing. As you know we are dealing with my 22 year old son who has chronic migraines and headaches, trying to get him help without him having insurance is horrible. I forwarded your blog for him to read and am going to start researching more information on getting him some sort of help. All we know right now is that they are not cluster.
As a chronic pain person, I can relate, but what you go through hon is so much for you to deal with I am betting. I can read it in the descriptions and my heart goes out to you. I am so sorry that there are not any treatments out there that can help more or don’t have scary or debilitating side effects. Some of that stuff may help but you are a zombie all day…so how to deal? Head pain and all of that or the side effects. Thank you so much for sharing, I look forward to read more. I love ya tons hon.
Thank you Pixie for caring so much. I do have your son in my thoughts and hope that he gets better in time.
Trigger identification is one of the things we can do for ourselves that doesn’t require insurance coverage. It’s also one of the best ways to help get a handle on this beast. I hope your son has had success with identifying his triggers and hopefully has found ways to minimize his access to those. It’s such a challenge. If he hasn’t gone down that path yet and needs some help getting started, just give me a shout and I’ll point you in the direction of some free tools he can use.
I know too about some of your chronic pain issues as our little chats from time to time have been most enjoyable. I do hope you are feeling less pain and more comfort these days!
Hugs to you and your family.
~ Cindy/PChip
This is sad, I have had a few migraines, but not so much anymore. I really can’t imagine have these headaches all the time, they are brain-crushing! I want to share this with my little unofficially adopted daughter who suffers headaches all the time and who happens to be my neighbor. I didn’t know there was a month of awareness for Migraines, until reading this blog. Take care of you! Rae
Thank you Rae for your kind words and support. I hope your friend is feeling well these days and may you never have another migraine yourself as well!
Thank you for putting into words what I don’t often- there were several gasps as I read for you described exactly what I’ve often said to my husband…….
Take good care of yourself –
With much love
Paula (PEP)
Thank you Paula!
I know exactly what you are talking about. I have suffered every week from migraines since I have been 41′ and am now 59. No medicine or treatment has been able to stop them. I hesitate to drive anywhere by myself over an hour away, because how would I get back if it strikes? I have read everything I could, go to a headache institute had medicines that give me hallucinations, Botox shots that went wrong, etc. The medicine I take when I get one is just 6 pills per month and now since it went generic ( not the same working), I have to pay $65/ month for 6 pills that work. I can’t work, think, or do anything but get under the covers when it strikes. I have tried to tough it out, but I always get sicker. No known triggers, just looms there. I pray during each one for deliverance and when it is over, I am grateful for every pain free moment. Sorry, such a long comment, you hit a nerve.
Linda
Linda – Oh my how exhausting it is to be in your position. I had similar experiences with trying so many different types of drugs along the way to finding something that would work to help take the pain away. I’ve read many stories that mirror yours. My heart goes out to you. And if you are like most of us, this frustration of it all works a real number on your mental health too. The side affect of some of these things can add yet another bad thing to what we already go through with the migraines. I’ve had some doozy experiences while being the doctors ginny pig!
Please know that while I recognize it is a tough road to travel – you are not alone in your travels. Getting under the covers when it strikes is a good way to help you manage the pain as eliminating the light is indeed helpful! I have also found that taking a very hot shower for as long as I can is also helpful with relief. While the pain weakens for only a short while (about 20-45 minutes) it is still some relief. Some is better than none and this wee size respite gives me strength to carry on. Yesterday I took 4 showers as I worked my way through the day. Sometimes the hot shower will help relax me enough to find sleep too. And although many times I wake up with the pain again, at least during my sleeping time I’m not feeling as bad.
I use several forms of water therapy to help manage the pain. I have found it to be one of the best forms of therapy for my body. Took me years of experimenting with various therapies before I learned that! And I’m glad to say it’s one of the cheapest ones too!
If you haven’t already tapped into the information and peer support resources over at http://Migraine.com, I would encourage you to visit there today and be sure to join their forums. There is a wealth of information and many people always willing to support you. If you are like many of us, you’ll learn as much from fellow migrainuers as you will your health professionals.
I wish you a pain-free day Miss Linda!!!!!
~Cindy
I would like to know about water therapy. Where would I look? I do subscribe to migraine.com. Thank you for your reply. Migraine suffering seems a lonely road at times.
Linda
Cindy, the link to the challenge website is not working. 🙂
Oops! Sorry about that. I went in and corrected the links. All is fixed. Thanks for bringing that to my attention!
Great blog post, Cindy! And so very timely! I suffer from the same disease (as long as other chronic pain and endometeiosis disease), and tonight I had one of my worst attacks: migraine and endometriosis cramps together. Bad night. And then I find your blog post! Such a coincidence? I don’t believe in coincidences.
I can understand you so well and your thoughts are my thoughts. I cannot remember one entire day of my life without pain.
My artwork is filled with migraine and general pain. And my colored works are attempts to exorcise it.
My favorite colors are black and purple. I usually wear purple to stimulate my Sixth Chakra and help me have lower pain peaks.
Thank you very much for this post, Cindy. I will join the challenge.
I wish you a great Sunday without pain. 🙂
Simona
Simona – Thank you for your comments. I am so sorry to hear of your illnesses and am especially saddened to hear yesterday was a bad one. I hope that you found relief by now. I had a tough one yesterday as well. I was attempting some therapy changes to see if I could get relief sooner rather than later. I had marginal success with that at first, but then wound up having to resort back to a triptan to break the pain cycle… again. Bummer! I hate when that happens. But it is what it is.
I’m super happy to report that I woke up Migraine free today! Wahoo! A Happy Sunday Morning indeed! So far your wish is working for me. 😀 I wish you well today also. May you have a pain-free Sunday too my friend!
And thanks for joining in on the challenge too! ~Cindy
Thanks to you.
As for therapy, it happens that I’m allergic to many drugs and anaesthetics. So my only painkillers are ibuprofen pills. I cannot even have anaesthetics when I go to the dentist…. :/
So I try with natural painkillers such as Ginger. It works for low pain peaks, but when the bad ones strike I need my high dose pills.
Luckily, as the doctor who visited me after my endometriosis surgery told me, I have a very high pain treshold. :))
I’m working on my Phantom of the Opera post. I hope to post it tomorrow. 🙂