Migraine Awareness Month Blogging Challenge #11: Say What?! (Ellen)

Ellen, at Migraine Interrupted, shares something that was said to her by a breast cancer survivor that I think is very, very powerful (and definitely worth the read). Here is her post - Migraine Awareness Month #11: "Say What?" Here's a sneak peak of her article / post:

"Cancer was a breeze compared to living with Migraine." 

Here's what her explanation was...

Everybody understands cancer. There are tests for it. You can see it on an x-ray. Diagnosis is fairly straightforward as is its treatment. There are commercials for it, free testing for it, and support groups for it. 

Because everyone talks about cancer, everyone understands what your body goes through during cancer treatment. They support you. They rally around you. They bring you casseroles to eat for dinner, clean your house, run errands for you, drive you to church and doctor appointments. They help you fight.

When you have cancer, everyone rallies around your family. They are supportive asking what they can do to help, and offering shoulders of understanding for tears when they are overflowing. 
Medications are constantly being sought for cancer. Research is ongoing and enthusiastically paid for by the public and by society.

Once you say the words "I have cancer" nobody doubts you or your experience. The only stigma re: cancer is when patients don't appreciate the pity party others often want to throw them.

Cancer has an end. When this cancer patient went through treatment, she knew about how long it was going to take. She had a light at the end of the tunnel and something to look forward to and strive for.

There was an end. There are *cures*.

Migraine is not like that. (Migraine Awareness Month #11: "Say What?")

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #11: Say What?!

It's difficult to choose the most ridiculous thing that someone's ever said to me about Migraines.

I know that the way I respond to the question, "How are you?" isn't the socially acceptable "fine," "good / great," or "okay." For a long time, I did respond this way... but, I reached the point where I just couldn't do it anymore. I still don't just spill everything about how badly I've been doing, but I felt like I wasn't being true to myself by saying that things were all good. So, I may get blank stares, since my comments are outside the social norm.

My interactions with people vary from short conversations with new people to longer conversations with people I've known for years. Regardless of the communication between us (sometimes it's just a short statement) about the fact that I've been dealing with chronic Migraines for several years, people still feel that it's appropriate to ask:

• "Have you tried Excedrin Migraine?" - Okay, really?! Yes, I've tried this over-the-counter medicine... along with many, many other medications over the years.
• "They still don't know what's causing these chronic Migraines?" - I don't really understand why this question keeps coming up. Migraine is a genetic neurological disease. The chronic, debilitating nature of my Migraines was triggered by an auto accident in 2008. Other than that, I don't know what kind of answer people are looking for here.
• "But, you look so good..." - Well, that's because Migraine is an invisible illness. I "look so good" because I try very hard to appear normal and enjoy the time that I do spend out with others (no matter how rarely that may be). What you see is a mask. It may not be on very well, at least not to those that truly know me well; but it's a coping mechanism that I use. If I looked as bad as I feel, I'd be a monster, scaring everyone in my path.
• "Do you really have a headache every day?" - Yes, I really have a headache every day. Even if I tell you that I've been doing alright, that doesn't mean that I've been pain-free. My "normal" is very different than before the accident, and very different than other people's (many cannot even begin to understand). My pain ranges from moderate to excruciating.

I know people mean well, but their comments can often be hurtful and/or belittling. It's hard to remember that we're all human, and we can't blame each other for acting as such. So, I do my best to deal with it in a respectful manner and move past it.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #10: Taking An Important Step

My husband and I were able to attend our sister-in-law's ordination this past week. We drove down to Waco, Texas to attend the service and celebrate. We're so proud of her! She and her husband (Jeremy's brother) are now both ordained, and will be starting at a new church as head pastors this next week. We're so glad we were able to be there for such an important event.

I struggled through much of the church service, due to the shrill voice of an opera soprano singing and the volume of the organ. My dad had recommended that I take earplugs, so (luckily) I threw some into my purse. I put one of the neon pink/yellow earplugs into one of my ears (hoping it wouldn't be too obvious to others), and plugged my other ear (as needed). I probably should've put both earplugs in, but even wearing the one (in public) was a huge step for me.

I struggled with the ride back home the following day; but I was able to enjoy dinner with a long-lost friend, the ordination service, and visiting with family. And, I made an important step in caring for myself... even though it required wearing neon earplugs in public.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #9: Day Dream Believer

Hmmm... a day without Migraine to hold me back - what to do, what to do... Actually, what not to do?!

A day without Migraine holding me in its grasp is nearly impossible to even imagine. But, after getting over the initial shock of waking up well-rested and with no pain, I would be ecstatic and do so many things that I've faced with limitations over the past few years.

Here are some of the things I'd love to do on my pain-free day:

Go for a walk outside, without sunglasses - without worry about the sun, heat, or exercise.

Drive and go shopping by myself - without worry about the sun and other stimuli driving involves, the fluorescent lights, other people's perfumes, getting exhausted within moments of leaving my home, or getting stranded somewhere because my head started hurting and I couldn't drive myself home.

Chew gum (specifically, cinnamon gum) - without worry about the chewing or smell worsening my head.

Play with my nieces and nephew - without worry about their high energy, loud toys, or piercing shrieks.

Spend time with my husband - without worry of him having to take care of me or that even the slightest touch will be painful.

Go to a concert (with my sister or Jeremy) - without worry about the lights, smells, loud music, crowds, etc. triggering a Migraine. I'd love to go to a Christian concert like the one my sister and I went to the summer before my accident - it was all-day, outside, and the bands included Skillet, Jeremy Camp, MercyMe, and Pillar - so amazing! I'd also love to take Jeremy to see Blue Man Group - I saw them in concert with my brother about a year before my accident - it was great!

Go horseback riding - without worry about being outside in the heat and sun, or dealing with the rhythm of trotting or loping.

Call and set up a gathering of my closest friends and family. We'd have dinner and game night at my immaculate apartment. I would prepare all kinds of delicious food and drinks, especially ones that I've had to limit because of my Migraines. We'd spend the entire evening eating, visiting, playing games, and laughing until it hurts - all of this without worry of being overwhelmed by too much stimuli, or of a Migraine being triggered by food / drink.

Scream, laugh, cry - without worry that any of these would trigger or worsen a Migraine.

My day without Migraine holding me back would be surprising, productive, enjoyable, and full of laughter.


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #8: Let There Be Light

Oh lights! I have to say that I've never been a huge fan of light, especially of flashing lights and the bright sun. But, since my migraines have become chronic, it's become more than just a dislike. Light sensitivity (i.e., photophobia) is a HUGE problem for me!

Our apartment is our "cave" - we have black-out curtains on all of the windows (and even then, it's sometimes still too bright for me). We don't keep many lights on either, and only use incandescent bulbs. I don't do very well with fluorescent lights, including the compact fluorescent lights (CFLs) that are being pushed for home-use because they use less energy than incandescent bulbs.

I limit my time outside, especially when my head is really bad or on edge of becoming really bad. I still try to get out some, but I do much better on cloudy days (with my sunglasses still on).

I try to choose the darkest booth in the restaurant to sit it (quiet, dark, and away from the crowd) - I then position myself to have as little view of windows, overhead lighting, etc. I can't stand overhead lights with fans... it gives a horrible strobe-like effect that makes me ultra-nauseous and worsens my head pain.

Sometimes, I keep my sunglasses on inside bright houses/apartments, restaurants, stores, etc... I don't really like to do it, but sometimes it can help (even if only a little).

I struggle with all the lights at night, when we're driving back home from somewhere. Even with my sunglasses, the headlights and streetlights just wreak havoc on my eyes and head.

If someone takes a picture that uses a flash, I'm doomed, and it's especially bad at night. The flash affects my vision, sometimes to the point that I can't see anything else, for at least 5-10 minutes (and usually takes much longer to completely go away).

Lighting has become a major struggle for me because I'm so very sensitive to it. I try my best to deal with it without it affecting others, but that can be difficult.

Here's a great resource for ideas to deal with photophobia:  Two dozen tips for light sensitive Migraineurs.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #7: List Topper

There are SOOO many myths and misconceptions about Migraine. But, I think the biggest and most common one is the idea that "Migraine is just a headache."

Migraine is a genetic, neurological disease. It affects a person in every aspect of his/her life. In fact, some migraines (such as, abdominal migraines), don't even have the head pain that most people identify Migraine with. There are four different phases:  prodrome, aura, headache, postdrome. Some of the most common Migraine symptoms are:  throbbing pain, light sensitivity, sound sensitivity, nausea, vision changes, vomiting, aura, neck pain, weakness, dizziness, sensitivity of smell. Migraine attacks last for at least four hours, and may last for days (or longer).

Migraine disease is much more complex than most people know or understand. I try to help minimize the myths and misunderstanding, by trying to keep myself educated and open to sharing with others what Migraine disease truly is. Hopefully this will bring about a better understanding of the severity of Migraine and other headache disorders... leading to increased interest, research, and new treatments.

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).