Tuesday, August 7, 2012

What you can't see

       As I start, I have to admit I am not sure where to start. I've mentioned before, writing is where I turn when I sort of have no where else to turn and, well, here I am. But I want this outpouring to be public - if anyone actually reads. Why? Not because there are others out there who may be going through the same thing as me, and I want them to know they are not alone - No. Because I know there are people out there who are saying the things I've heard my whole life, and I want to talk to You. The folks who think that people with chronic pain are wimps, complainers, or lazy nappers who could just take a few Advil and get over it -  Yeah, I want to talk to you.
     I hate the term Migraine. Like I hate the term organic. It means nothing these days. Everyone who has a headache has a migraine. When I was a child, I was put into the hospital with what they termed an "unknown virus"  - my first knock me out of commission headache that I can remember. From then on it has been constant reason after reason - stress, puberty, "you'll grow out of it", not enough rest, dehydration, pregnancy, postpartum, too much medication, not enough medication, adjustments, not the right adjustments, ect, ect, ect. I don't care what it is anymore, I am just... just tired of them. I want them to go away. Forever.
    Here is what people who DON'T have or LOVE someone with real, true chronic pain (not the sorta kinda pain that is - let's face it - a little bit embellished for attention) cannot understand: chronic pain lives and breathes under the surface of life. It is always there. Aways. All fing ways. It never goes away. Sometimes it is deeper and sometimes it breaks through the surface, but it is always lurking there - just there. If you love a person with chronic pain, you can see it in their eyes. Sometimes, I can tell He is looking, just to see how deep it is today.
    Let me describe to you what normal is for me. Some part of my head/brain hurts every second of every day. On a good day for me, my head hurts bad enough to put most people to bed (I think - but I can't feel what others feel, so...). I can do most things you can - get up, take a shower, drink coffee, get the children ready to get out the door. But here is how it works for me: I get up, but before I get up out of bed, I gauge how bad my head hurts - that will determine how fast I can sit up, and how fast I can walk to the bathroom, and how hot the shower needs to be, and if I can turn the lights in the bathroom on. The level of head-hurtedness will also determine if I get to shave because if it hurts too much, I can't balance, and if I can't balance, I can't use a razor - you get it. My husband also seems to just know when the gauge is higher because he automatically shows up with a hot cup of coffee which helps dilate my blood vessels and makes me feel a little better. And I also have to drink lots of water. Lots.  However, if my head is feeling okay. I can get up and go.
     While I get my children ready, I am praying no one has a meltdown, but not for the same reasons that you do. Sometimes when the baby screams, I go blind temporarily - literally. Screaming is not helpful when a headache is always looming. If someone is screaming, I cannot carry the baby down the stairs without worrying that I may drop her. Thank goodness she is learning to come down by herself so I don't have to worry about that too much longer.  And I am so tired of having to tell my girls that I have a headache. 
      Let's talk about making beds. Simple enough, right. Every time I raise the quilt or comforter and shake it to straighten it out to lay it across the bed, I get a head rush that pounds my head for a good 15 - 20 seconds. Anything that causes pressure changes - up and down, in and out - I have to do very carefully or my world can shut down quickly.
     But the thing that confunds the world about chronic pain is that we learn to function in spite of it. Joe Public assumes that if we can function, it must not be that bad, but, Joe, you are just freaking wrong.  So we go swimming, to the movies, out to eat, watch the Olympics, get on Facebook, work, blog, ect. We live, because if we don't, If the pain takes over - then it takes over and everything fades away and becomes lost inside the hurt and nothing matters anymore. And life becomes pain killers, and we become addicts, and the pain wins. And we lose.

So, if you are one of Those people who think chronic pain - the diseases you can't see, the pain that hides inside - is not legit. That those people are faking it or are crazy, then all I can say is, I hope - not that it never happens to you - that it never happens to someone you love.

    Here are some of the things I am soooooooooooo sick of hearing.

Do you need to rest?  Of course I need to rest. I work full time and have three small children. Do YOU need to rest?

Have you been to a doctor? Many. Since childhood - family doctors, Ers, OBGyn, Chiropractors, ect. I've been on lots of meds and special waters/fluids. Yes, I do the cold rag, dark room thing. Sleep doesn't make them go away anymore. Yes, there have been MRIs, CTscans, blood work, thyroid work, and the other stuff you want to ask about.

Have you taken anything? This is my favorite. I go to the chiropractor once a week. I take meds twice a day and serious meds when I have a big  "break through" headache - I am getting ready to start taking some non essential amino acids that have been known to help. I would eat raw snakes if they would make it stop.  

I get headaches, too. Especially when I've been looking at my computer all day or when I've been out in the heat {or something similar}.  Really? . . . Yeah I see how that is the same thing. To me that is the same as saying I have three children so I totally understand how someone with 15 children feels. Nope. Notsomuch. 

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