Friday, September 12, 2008

Welcome to My Invisible Illness: A Journey into a Migraine

National Invisible Chronic Illness Awareness Week, Sept 8-14, 2008 www.invisibleillness.com




Thank you for coming to my party of sorts. I don't mean to be sarcastic, but you see, I'm feeling myself start to fade today. The weather is changing and so starts my metamorphosis. Let me explain:

A statement was made to me this week, again, on a rather sunny day. I was dressed very nice, my hair was done up, my make up on. You get the picture. I looked - oh dare I even utter it - good. There I said it.

Anyway, I was feeling great, no monster stabbing my skull. I had gone to great lengths to make my feet look and feel nice, nails clipped and polished. Here I was smiling and minding my own business when this certain person mentioned to me that I "look too good to be sick." ????? What does that mean? Exactly.

Fortunately I am able to have those "too good" days when the beast isn't beating me down. I can smile on those days, and get dressed, brush my teeth and eat. Generally, I'm able to even walk out of my house. However; there have been days, like today, where I feel myself sort of fading, like I'm here, but slowly going someplace I don't want to be. To that sick place; that invisible place. The ugly place that the outsider doesn't see.

If you are new to my site, brace yourself, I hold nothing back here, I tell it like it is. Migraines are not at all invisible, not mine anyway; they invoke themselves in an almost beautiful array of invitation....

in a very dizzying fashion like this. I cannot escape them, see, I just fall deeper and deeper into them. See how pretty it is! You can hear it, too, can't you? It's very faint at first, but a slight tingle of a triangle, and it leaves a little shiver up my spine. This usually takes a few hours for me, the time I'm in my slumber hour, or so I think. Part of me is in a sort of half sleep, the other is in a hypnotic daze, gazing off into the aura as they dance off, taking me away with them. Swirling away for what must be hours, changing me chemically, no doubt. For I went to bed feeling wonderful.

Now as you have fallen into the trap of the dizzying array of my aura, I want you to still concentrate on it's beauty and remember the sound of the triangle; ting, ting, ting..........


Be very careful, that triangle is very dangerous, it's a freight-train in disguise. Just as you are lulled under the covers to get snuggled and warm, thinking you are comfortable and at rest, the sound becomes louder, and louder still. As you cannot escape the dizzying array of that pattern, it spins faster, flipping from left to right, throwing you off balance. Your center of gravity? Where exactly is it? Your body jumps at the thought of falling.


The train is now approaching and you are feeling the cool rails on your very spine. You are so cold, you shiver. And yet, you are sweating. Now the stomach is in that awful mode wanting to puke, you feel the need to run, but you are afraid to move. You have been so tensed up that your jaws hurt. The triangle, yes, it is now making it's true appearance - suddenly you hear the sound of screaching iron on iron. Louder. Louder. And worse, you feel it, yes, you can feel it, it has now hit you inside your head. You cannot escape it.



The monster is desperately working; banging and pounding about inside. You can hear the sounds of his breast plates as they move against each other, they screach in unison with the train now. He is grumbling with your stomach, the sounds are so deafening and painful to hear.





You lose sight from your right eye; and as you try desperately to get to your feet, to make it to the bathroom in time, you find that you just lost the entire right side of your body. No feeling on your face; your arm is as heavy as the dog, you are terrified. You cannot move your right leg. You have never in your life felt such intense pain before. And why is the sun blasting silver rays into your window? Have they ever before made such a sound?

What has happened to you? The room, the floor and bed start to spin and you need to get to the bathroom. You will puke your guts out if you don't get to the bathroom! Unfortunately, you can't move. Welcome to my Invisible Illness called Migraine.

It isn't always invisible. It isn't alway pretty. I don't always "look good" nor do I necessarily feel terrific. But by God's grace I do get through it day by wonderful day; or monstrous day. whichever.

My Migraine days, you will simply see me, invisible. I will be at home (or in the hospital, infusion center) under my covers, dealing with my monster in the only way I can......I will not be smiling, made up, dressed-up, or looking AT ALL good.

Today, I am fading out; going to invisible land. Wishing all of you with any and all Chronic Illnesses, a truly Pain-free weekend.
Deborah

9 comments:

Dr. Carley Clan/ Migraine Community said...

ooo deb,
I am so on the same page as you! The best thing about you is that you speak the truth....you do not dumb down things or afraid to say what they feel like.
I remember the mid 90s and before when people thought i was nuts when I would tell them what an aura is REALLY like plus the migraine.
It is so nice to see someone that is not afraid.

5 years ago I went to a Christmas party with my hubby (all of the other M.Ds were there and the er doc that usually would take care of me was there, since they work in the same system) HE DID NOT EVEN KNOW IT WAS ME!!! MY HUSBAND BILL HAD TO SAY YES, THIS IS LIZ, THE ONE YOU ALWAYS SEE THAT IS IN AGONY! I didn't even look like the person the Er doc was use to seeing!!! It is amazing how we can look so different. I asked my husband,"Do I look that bad with them." My poor husband looked at me and said, "you can't help it, your face changes."
It is amazing how our face CAN ACTUALLY LOOK DIFFERENT!!!!!
just goes to show you, when you pass people on a good day...you never know what their home life is like!!
I pray you are having a pain free day!
liz

Angela: mom2girlsgirlsgirls: said...

As always you've done a fantastic job describing the monster. I hope you're well soon.

deborah said...

Thank you both. What is now killing me; the hard drive on my laptop crashed and I'm resorted to using my husband's computer. As nice as that is, I have no contact list, and pretty much everything in my little computer world is mia right now. How did we ever get so spoiled in these here US??

Jeff said...

Hey Deb... I hope you had a decent weekend and the monster didn't take over. I am amazed at the details you are able to convey when you describe these migraines. Even though I've never experienced one personally, I feel like I understand what you're going through. That's a testimony to your writing.

Dr. Carley Clan/ Migraine Community said...

deb
I know all too well about computers crashing. This is our 3rd lab top THIS YEAR!!!

uuurrgggg
talk to you soon
liz

Migraine Chick said...

You have the best migraine monster descriptions. every detail is so vivid!

Anna's Spot said...

Wow, I understand your symptoms and just thinking about it makes me ill. Great post, very graphic at least for imagination.
Anna

Christy said...

I kept avoiding reading this post because the title looked scary. Boy was I right. Very powerful.

Anonymous said...

you deserve an award for that post-it was awe inspiring and moving-it was almost as scary as an actual migraine.