Disney World. The Good, the Bad, and the Migraine

Disney World

Disney World!!!!!!

 

I went to Disney World for 3 days and I could probably write a book on it.  Instead I’m going to focus on three things. The good, the bad, and my migraine.  So let’s begin with the good……

Where to begin. Disney World is called the happiest place on earth for a reason.  If you’ve been following me from the beginning, you know this is not the first time I have written about a Disney princess (A Whole New World?) I have loved all things Disney since I was a child and have been so happy to see my children fall in love all the same.  We spent an entire day at Magic Kingdom.  I had planned and saved like most families do and was eager to see how my dreams would come true for my family.

My personal favorite thing was to ride the rides.  I used to love rides but now enter them with a bit more trepidation.  I fear flashing lights, jerking motions and all those other triggers that come along with my migraines.  I also feared the weather, my diet, the stress, dehydration, and exhaustion.

But Tinker Bell sprinkled her fairy dust on me that day and I lived in a fairytale land.  I did however, prepare.  I had water bottles for all of us that I filled at every water fountain I saw.  I didn’t care about how many bathroom breaks we were going to stop at, we all were staying hydrated.  I also brought portable fans for my family that tends to sweat and me who tends to overhead.  I had snacks galore that were healthy and filling enough to stop us from stopping at every food stand we saw.  I had hats and sunglasses for everyone while we waited in the sun.

I didn’t stress at all because we were on vacation, we were together, and somehow I was feeling OK.  OK for me means super duper terrific on a day like our day at Magic Kingdom.  One of my highlights was watching my children meet the characters and waving to them at the parades. IMG_4327IMG_4332

Is there anything sweeter than a tiny hand waving at floats singing to music?  I found myself waving at everyone also, it was contagious. IMG_2246IMG_2186

I actually got to feel like a normal person that day.  I spun around in tea cups laughing and only feeling dizzy.  Feeling dizzy from your kids joyfully spinning you verses feeling dizzy from standing up on an average day is very different.

I felt shaky from my daughter “steering” a car on a track slamming from side to side and laughing from the depths of my gut.  This shaky is wonderful compared to shaking from pain masked by medication yet not masking muscle contractions.

At the end of the day I felt truly tired.  Not exhausted from fighting a migraine, tired from a long glorious day.  I was able to sing with Ariel in her grotto, the way I love to sing (Feeling better makes me sing)IMG_4360

I flew like I could fly

I flew like I had wings.  I took selfies without thinking how my smile was a mask for how I really felt.

The laughs, the joy, the magic was all from a low pain day.  From the opening song that made me feel butterflies in my stomach to the last firework that gleamed in my eye, I was feeling low pain.  Whatever it was; the adrenaline, the preventatives drugs, the preventative living, or  the intoxicating bubble of love and joy, I call it magic!

I could go on and on and on about how our day at Magic Kingdom was one of the happiest I can remember in a very long time (and I consider myself to live a happy life) but I will stop at saying it was perfect. For those of you who can’t relate to a perfect day, I thought it was impossible for myself.  But just like every perfect day comes reality.  Stay tuned for the bad and migraine party of my trip.

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Medication doesn’t work every time in the same way

The thing about migraines is that there is no cure and there is no medicine that works for everyone.  The even crazier thing is, there is not a medicine that works every time even if you are lucky enough to find something that works for you.  It’s constantly a guess and check and experiment game.

When it comes to matters of the brain, it’s hard to keep on top of it.  My entire life I have been on dozens of medicines and sometimes they work, sometimes they don’t.  Or they work then all of a sudden my body changes and it doesn’t.  The game is never ending and I’ve been on the losing end most of the time.

Here’s the most frustrating part…..sometimes everything stops working.  I got home from vacation expecting a migraine from coming from the Caribbean to settle back into a polar vortex.  So I tried to be prepared.  I saw my neurologist the day before we left and got refills on my prescriptions so I could battle when I got home.

The day I got home I filled them and spent $670 dollars.  I almost fainted on the spot!  So I now have had a migraine for 8 days ranging from a 5-9 pain scale at all moments and everything has stopped working!!!!

I have taken everything I can without causing rebound headaches or overdosing and nothing has given me a second of relief. 670 dollars and nothing works! I’m doing everything naturally that I know of also and everything has stopped working.  I threw my son’s birthday party by staggering around with my Headache Hat and sunglasses on while we set up. The party was amazing and my son will never have any idea that his mom woke up with her right eye swollen shut from the pressure and pain.  I hope one day my kids will look back and not see me as weak but see how strong I am to fight.  By about day 4 or 5 the mental fight with my migraine began.

The sadness of missing out on life, the loneliness of laying in bed, the anxiousness of not knowing when it will increase or if it will ever decrease, the longing to do simple painless things, the nonstop pain of doing pretty much everything, and mostly the exhaustion.  I’m really good at faking it in front of other people, but the second I’m alone all I can do is collapse.  What do I do with my free time?  I curl up in a cold dark room.  So what do I do?  What do you do when everything stops working?