Thursday, June 25, 2015

Day 25 My Hope

So today is June 25th. June is Migraine and Headache Awareness Month. #MHAMBC Today's writing prompt was : "YOUR Hope," What do you hope for most in your journey with Headaches or Migraines? 

My hope for the future.... I really don't hope for a cure anymore. I know that's hard to believe and hard for my family to understand. It's not that I don't want to get better because I do. It's that I have changed the focus of my life away from the hunt for the cure. Trying to cure my headaches does not need to take the majority of my time, energy, and money. I had to come to a place of acceptance that if my headaches never go away I can still have an amazing life. I needed to stop waiting. Stop waiting to get better. My life was passing me by and I was  just waiting.

Not hoping for a cure was one of the best things I ever did. I feel free in a way I didn't know I could feel anymore. This is not for everyone. I don't know that with Chronic Migraine you can give up. It's too hard to keep trying cures when there are a million. But New Daily Persistent Headache... Until we know more about it, it just feels like throwing my money and time into the wind. It feels like insanity. Trying the same things over and over and hoping they will suddenly become treatment for NDPH. Migraines and NDPH are not the same thing. Continuing to treat NDPH with migraine treatment is a guarantee failure. 

Maybe there will come a time when I resume the hunt. Maybe the need for a cure will consume me again one day but I don't think so. I've finally given it fully into God's hands. If He wants to heal me, He will. That's enough for me. I've progressed so far down this road that I've written a note to my future self to explain why we aren't seeking a cure. I didn't know if I would ever post it. I really just wrote it as a note to myself when I was feeling weak but here it is:

Dear Future Megan,

Can you just listen to this for once? How many times do we have to do this? I don't say this to be be mean or negative but you have NDPH. If you ever get better is will be a miracle from God. So please stop wasting your money and time on people who promise they can help you. Guess what? They are lying. They probably don't mean to. Even as I write this I can see you plotting which doctor you want to visit next. So I've made a step by step guide to help you make good choices.
1. A high quality website does not mean they can treat NDPH or let's be honest, have ever even heard of it. Ok here is a test for you. Call the office and ask the Dr. if he knows what NPDH stands for. It you want to cheat you can even spell it out. If by some miracle they have heard of it, you may move to step two.
2. Do they really know what NDPH is? Ok say they do. But have they ever treated anyone with it or hey, have they even met anyone with it because you haven't. You may only advance if they say yes, okay?
3. Do they promise they can cure you or even reduce it? 
Yes- then you stop here. You may not continue. 
No-you may continue. People who say yes are delusional and probably just made an educated guess as to what NDPH stands for. No one can promise to fix you. Repeat this to yourself. Over and over when you are weak and it just feels so good to have someone tell you they can fix it. If they promise you may only continue when upon failure they will give you a full 100% cash reimbursement as well as a time compensation. They said no to that? Well then they aren't confident in their promise are they?
4. It's going to hurt. All of it. Even the things that don't seem like they will hurt. All of it hurts really bad. Massage? Physical Therapy? Chiropractic? Yes all of them and many more. Are you a masochist? I think you are. Because the last 40 times you went to the chiropractor it almost hurt as bad as your spinal tap for a moment. Not really but you do hear this comparison? It was almost that bad and it hurts EVERY time! All of them. Stop paying people to hurt you. Why do you do this??  Touching the ouch spots does not fix them. Repeat: Touching the ouch spots does not fix them. Why do you ask people to do this? Still want to continue? Fine.
5. So the pain didn't deter you. (Surprise, Surprise) How about the money? Think of what you can buy with all that money. We won't disclose the amount that has been spent in search for the cure because I don't actually know it. And we would weep if Matt told us because you could probably buy a pony and a castle in Ireland for us both to live in. Instead you give your money to Charlatans. But whatever a pony would probably be really stupid.
6. You are still going?!?!?!?! Ugh ok. We are now going to do some visualizing. You just finished your last visit, the one where they think you should be cured already. They will either:
a) tell you to continue to come forever, just in case. 
b) make excuse because your condition is 'chronic'. 
c) get mad and frustrated
Ending things is the worst feeling ever. They never understand and they make you feel guilty. They make you feel like you want to stay sick. Remember this feeling when you want to start things up. Remember how bad it is and how small you feel. You almost always cry in the car on the way home. But don't be discouraged here are some things you can do instead of looking for a cure.
1. Face Time your nieces and nephews
2. Eat food
3. Take a bath
4. Have a cup/pot of tea
5. Listen to the Book Thief again.
There you go. Those things are more fun and may make you feel a little better. Please remember this. Save your money for CC (Clopitty Cupcake, my pony is already named, obviously) and Ireland.

I should really include a drawing of CC. We'll see...

Wednesday, June 24, 2015

But the Fire Makes You the Dragon Instead. Day 24

So for Day 24 for #MHAMBC Migraine and Headache Awareness Month Blog Challenge the writing prompt was Christina Aguilera's "Fighter."
Best lines:
"After all of the stealing and cheating you probably think that I hold resentment for you
But uh uh, oh no, you're wrong
'Cause if it wasn't for all that you tried to do, I wouldn't know
Just how capable I am to pull through
So I wanna say thank you
'Cause it

Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter"

A main theme for this month has been letting the pain turn you into something better. A better version of yourself. This is really hard. It's much easier to let it turn you into a bitter husk of yourself. Letting it make you better and kinder is a full time job.
Recently I was listening to the new The Weepies album (for the 50th time) and I heard something I hadn't heard before and I haven't been able to shake it. So much so that I was compelled to draw it. The song is "Does not bear repeating" from Sirens.

To not lie down on solid ground,
not slink around this time
That's over head, boy, that's under head
but the fire makes you the dragon instead

This is not the way I thought it would be
Thought it would be much lighter
This is not the way I thought it would be
Thought it would be much brighter

I thought I saw stars, but it was a rain falling
I thought it was a fight, but it was a game, all in
I thought it was a once, but it was again and again,
and again, my friend indeed, does not bear repeating, oh
wo, wo, wo, wo, wo, wo, wo

I thought it said. "Let the fire make you a dragon instead". But the actual lyrics are " but the fire makes you the dragon instead." Either way, I love the idea of the fire making me a dragon instead of burning me alive, instead of destroying me. I want the fire to make be stronger and tougher and faster and a dragon. Who doesn't want to be a dragon? So here is a drawing of the fire turning me into a dragon instead.

Tuesday, June 23, 2015

Day 23 but I'm doing Day 19

So as chronic pain is apt to do, it keeps one from staying on schedule. I don't really want to write about today's topic- "Do you have hope for a cure?" Because I've talked about that a bit already. Instead I want to jump back to Day 19 of Migraine and Headache Awareness Month Blog Challenge  #MHAMBC  #NDPH The writing prompt was "Brave" By Sara Bareilles
I've heard that song tons of times. I'm pretty sure I own it but listening to it and reading the lyrics was powerful. Here are my favorite lines:
"Kept on the inside and no sunlight
Sometimes a shadow wins
Everybody's been there
Everybody's been stared down by the enemy
Fallen for the fear
And done some disappearing,
Bow down to the mighty
Don't run, just stop holding your tongue

Maybe there's a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is"

Maybe there's a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is


Stay tuned. Tomorrow's post will have a drawing of a dragon :)

Thursday, June 18, 2015

A- stinkin- MAZING

I was like a kid in the candy store while this as happening. It went on for an hour at least. One after the other. We were driving around and I opened the sun roof screen. Matt was shocked. He looked at me and said "You opened a window." And I smiled. Lighting is the only kind of light that is always acceptable to headache suffers. I kept gasping and looking around. I was distressed that everyone else did not get how amazing this whole event was. When we got home I just laid on the porch and let the camera roll.

Wednesday, June 17, 2015

Another Drawing

So crafting soothes me. Always have. Always will. Lately I've wished I could draw what NDPH looks like. My blog header art ^ is my first go at it. I'm pretty happy with it. That's pretty close to how it feels and probably how it looks from the outside. Here is a new one. I don't even know how many times I've done this exact thing.

More to come. Stay tuned as I try to make my drawing better... but I'm not a perfectionist lol so don't hold your breath ;)

Rising like a phoenix. Day 17

Hello sweet readers,

Today is day 17 of the Migraine and Headache Awareness Month Blog Challenge #MCAMBC #NDPH
The writing prompt today is this picture and the quote "Hope rises like a phoenix from the ashes of shattered dreams." - S.A. Sachs.
Oh yes it does. That is exactly where my hope comes from. It is a beautiful picture of what has to happen. You have to rummage through the debris of your old life to find the small bits that can be saved and turned into something new. It's the most organic kind of recycling. But it's painful. Because the unusable bits have to be buried.

 I had a long mourning period for the old Megan. I didn't know that's what I was doing until I'd reached the end of it. I didn't know the name for the keening loss that kept building inside me every day and then spilling out over my life like toxic sludge. My book talks a lot about this, the grieving. It has to be done. It will kill you if you don't do it. You have to rise like a yucky baby Fawkes out of the ashes of the old you. You have to. 

It honestly took me about a year. I don't exactly know when it started and I don't know exactly when it ended. I'd been hiding my feelings from myself. I do remember when the feelings of peace came. It was so startling and unexpected that I didn't even recognize it at first. I didn't understand why I felt more cheerful on bad days.

Sheila was the one to name it. She had come to visit so she could go to my new dr with me. This was when I got diagnosed with NDPH. But even before that Sheila noticed that I was different. Over the previous years I'd slowly turned bitter and I'd lost my softness. So I'm sure that my new acceptance was a stark change easily seen from the outside. She saw the new lights shining through me that even I didn't have names for. She named them Hope and Peace. And that's what it was. I'd finally accepted it. I'd grieved what was lost and had finally moved past it to what was next. My hope was not for a cure from my headaches but for the great life I was going to have despite them. My peace was not the world's peace but God's peace. Somedays I still slide back into the depths but rarely. I don't live down there anymore. I am a new Fawkes made up of the strongest, bravest part of me. Amen. God is good isn't He?

Monday, June 15, 2015

Day 15 Migraine and Headache Awareness Month Blog Challenge

Look at me doing two days in a row. That is actually what I want to write about today for Day 15 of #MHAMBC #NDPH  The writing prompt was the song "When you believe" by Mariah Carey and Whitney Houston. It's from The Prince of Egypt . Great movie, great song. The best line in the whole song is "Though hope is frail it's hard to kill."

Oh that sentence is so true. How hard I've tried to kill hope, to just be done with it but thankfully it endured. It endured in part because of days like today: Better Days. Not pain-free days but markedly better days. They are sweet nectar. They are the things that spoonies live on.

So what does a better day look like? I usually only write about the bad of the bad but better days are the rarer, elusive kind of days. They need to be studied for science.

Today started at 7:30 a little early. I felt 'not great' as I do most mornings. I'd been clenching and grinding all night and my face was sore. I made myself breakfast (lately it's been a protein shake by Herbalife) then I sat and watched a show in the dark for a bit. These two things are crucial for any day.
1. Nice cold liquid breakfast. It's a rest for my overworked face muscles.
2. Meaningless, relaxing T.V. in the dark.
So √ and √ for today. But then as I rested and charged for the day I began to notice that I was charging a lot. More than normal. My batteries were filling up and up. I dared to hope that a better day lay ahead of me.

Then at 9am I mailed a letter at the FedEx store. On a normal day, I would have to come home and rest after that. One errand, you scoff. Yes. After one errand. Especially one done so early in the day. 9am so early? Yes. But today I didn't go home. I did another errand. Then another. Still feeling good. Then I came home to change and went to the gym!! What a day right?

Going to the gym is a coin flip that usually only has one side. I need to go to the gym. People who exercise get fewer headaches, said some dummy somewhere. Also I want to be in optimal shape pre-baby to make my life easier on the flip-side.
Problems with gym:
1. It's bright, darn it. There are huge windows all along the wall. I try to pick a treadmill in the shadows but it's tricksy and some days the sun reflects off everything and I know I've failed.
2. I have to drive to and from. This may sound obvious but the car is not always a good place for me ex: sun, reflections, noises. And on the way home I may be on the precipice and driving will tip me over.
3. It's exercise. My heart is pumping. My head is pounding. I'm sweating. Enough, you get it. Going to the gym often means giving up the rest of my day but everything had a price. But today as I leave, I feel the edge. I feel it and somehow skirt it. I made it past. The day is still good.

Now it's only 2pm. I'm probably counting my chickens but making it from sun up to 2pm is a gift and I thank God for it. Days like today are a wellspring of hope and when I am faced with one I have two options: 1. Enjoy the crap out of it. Do all the things I can. Live it to the absolute fullest with no regard to how long it will last.
2. Savor it in quiet like a sweet wine. Sip is slowly and deeply. Breathe it in and try to stretch it as long as it will possibly go.

I usually go for plan 1 because getting things done is so tempting and validating. Because its nice to be able to tell Matt all the things I did when he comes home from work. But it slides me into my nemesis and sensitive spot. My worth is not related to what I accomplish. My worth is not related to what I accomplish. I am not a better wife if I run 10 errands. I am not a more valuable human if I leave the blinds open. My worth comes from God. It's so hard to remember. The eyes of the world don't like my invalid, quiet life. I'm only 27. I should go to the gym and run 10 errands every day with the triplets and our 4 beagles. But that's not my life (Thank God.) Each to their own. As Amy Poehler says "Good for her. Not for me."

***Status Update*** 3:50pm I broke it. No good thing can last forever or as we say in the Allen household "These things don't last forever". I went for a walk in the hot sun and the day is lost. I'm currently sitting in the dark stairwell eating a banana with an ice pack on my neck. Oh well. It was really great wasn't it?

Sunday, June 14, 2015

Day 14 Hope Lies in Dreams


Hope Lies in Dreams: Migraine and Headache Awareness Month Day 14

I agree with this quote very much. Dreams and Imagination. I am a big proponent of both. But I guard my dreams. It is an ever-present battle to keep them in check. Just yesterday Sheila said "And one day your headache will be gone." And I said "Mhmm." I couldn't say "Yeah, I know they will." Because I do no know they will. I don't even really dream that they will. Isn't that strange? Maybe it's just my own weird brand of acceptance but I don't imagine what my life would be life headache-free. Partly because it's too painful. It's too stark a contrast to my curtained little world and partly because I don't like to hang my dreams on the moon. I want dreams that are possible. That I can make possible. But I still dream. I dream a lot. I dream about our new home that's waiting for us at the end of July. I dream of the little feet that will fill those rooms and explore that little creek. I dream of seeing my book on a bookshelf and someone telling me they want to buy it. I dream of all my family living together again. I dream of going to Europe again. 

It takes courage to dream these dreams, to dream that I can still do all these things with NDPH. That I can still be everything I want to be. It's scary when just an hour with my darling nephews make my head pound. It's scary when a crack in the curtains sends me off the depths. But if it's easy to accomplish it's not worth it right? Someone said something like that once. And you have to believe that because it will be so hard, it will be something really great.

Sunday, June 7, 2015

June is Migraine and Headache Awareness Month

Every day of June there is a blog challenge for MHAM - Migraine and Headache Awareness Month. I decided to take up the challenge (even if I'm starting on the 7th day) #MHAMBC Day 7
So today's topic is : What activities or hobbies do you participate in that help build hope for you?

This topic is perfect. This whole theme for the month is perfect. Hope. It's what we need most and fight against the most. So what hobbies help me? Two things really:

1. Writing. It has saved me. I've always been the kind of person who has needed to write out my feelings for them to make sense. I need to see the words on a page and then I can translate them into something I can understand. I just need to get them out. So honest, unfiltered journaling has helped and so has my novel. My main character has New Daily Persistent Headache (like me) and helping her process her bitterness and anger was healing for me. And curing her was so cathartic ;)

2. Crafting. This has always been my de-stresser. Creating something fills me up. Knitting. Sewing. Drawing. Painting. Whatever form, I need to do it to survive. Too long with all that energy inside myself and I feel fretful.

On a good day those two things are enough. They hold the tide. But when I have to spend the day in the silent, dark there is no crafting or writing and it gets harder to hold onto hope. It's a battle that is never won for good and that's the hard part. You can't beat despair and bitterness once and for all if the attacks never stop coming. It's every day. But I can say, four years in, it somehow gets easier. It feels like it should be the opposite. You get used to it and you learn how to live with the monster of chronic pain. You learn to find joy in the dark.