Imagine that you wake up tomorrow morning in the worst pain you can imagine. Worse than natural child birth. Worse than Shingles. Worse than kidney stones. Worse than broken bones. Taking OTC pain relievers does as much as good as taking a Tic Tac for what they do for the pain.
Then you wake up the next day with the same pain, and the next, and the next. There's no end to it. There's nothing the multitude of doctors you've seen can do about it except try different medicines hoping they find the right cocktail that calms the symptoms. There's no magic bullet to make you better.
You are very proactive & see doctor after doctor in an attempt at answers. You refuse to accept that there is no answer for what's going on. Doctors refer you to specialist after specialist. All end up being stumped & basically hand you off to the next because they don't want to admit that they have no clue what to do with you.
Months go by & you realize that your life is no longer what it used to be. That first morning you woke up in pain changed your entire life into something you never wanted. Not only do you hate that now your bad days outnumber the good days in any given month, but you're not the type of person that wants attention for health issues. So you suck it up & don't tell anyone how bad it truly is.
You go on with your life as if you're fine. People ask how you're doing, you lie. You go about taking care of your children, your home, your marriage. You keep working, you stay in school. You pretend that this pain can't determine your life for you.
But then you have to acknowledge that stress, random foods, driving, and even unknown triggers cause you to get sick at unfortunate times. Like on the 2 1/2 hour road trip to your Anniversary vacation with your hubby. On a highway where there are no bathrooms. Or in the middle of a class, when you least expect it, and you just make it out the door before you get sick on yourself.
You get so used to it that the first thing you do when you go any place new is visually locate all bathrooms & make sure you're within a 30 second sprint of a bathroom at all times because you've learned that that is exactly how long you have once you get That Feeling. Which is not just your run of the mill nausea. It's a burning, heavy rock in your stomach, you break out in a sweat, your legs start shaking, you're dizzy, and you have a strange sound in your ears that blocks out real sounds. Try asking for a bathroom or even walking to one & not drawing attention to yourself with all that going on with your body.
After months, years, too long to keep track, you have been through every combination of medication that could possibly ease your symptoms. You're then told by your specialist, who is rated in the top 3 for the state in his field, "I'm sorry, there is nothing that can cure this. You need to face that there is nothing more we can do. We've tried everything. Some people just don't respond & you're one of the unlucky ones."
Nothing more to do. Try to live life in an indescribable pain.
This is me.
I've had all of those painful things that I mentioned in the beginning, so I can say for certain that what I'm walking around with is more painful than any of them.
It hit me yesterday how much pain I live with each day, when I ended up in the clinic with a UTI that I've apparently had for about a week. I didn't realize I was sick until I was almost passing out from the pain of peeing blood. My daily symptoms masked the back pain, burning, fever, & cramps of an infection. The nurse was amazed I wasn't in sooner & that I had walked in on my own. I've had UTIs before, I know what they feel like on their own. The symptoms get horrible when they go untreated. That's when I thought, "hmm, my life sucks."
That's all there is to it. It sucks. And no one realizes 'cause I go on with life as usual & the only time they know is when it reaches a level of unbearable & crippling.
I haven't given up. I'm sure my Dr. House is out there. I still live my life. I still pursue my dreams. It's just a lot harder to do any of those things than it is for someone who doesn't have to battle their own body to accomplish anything.
I get tired easily. Struggling for every little thing makes a person exhausted. If I'm in bed, it's not a good sign. It doesn't mean I'm lazy, it means I literally can't keep my eyes open.
I get down. When I feel like I'm being physically attacked over & over & there's nothing I can do to stop it, I get depressed. It's a difficult battle & it wears me down. It doesn't mean I've given up, it means I'm human.
I don't ask for help. I don't want this to define me. I want people to see me for who I am, not for what my illness is.
I don't want to hear stories of "I read..." or "My coworker's cousin's sister in-law's neighbor has the same thing & she..." Trust me, if you've read it or heard it, I've read it or heard it...x10...at least. Not to be rude, but everyone with this is different & what works for one person doesn't necessarily work for the next. And to be honest, when I'm having a bad day & can't get my brain to focus on anything else, it feels like I'm being told that I haven't done enough.
Sometimes I can't do what I want to do. If I break plans with someone, it's really, really bad. I don't break plans just for any reason & I do everything in my life while living with this. If I cancel something, it means I literally cannot move & then I feel guilty that I let someone down.
I don't want this. No one does, except maybe someone who is also really sick in the head. There's not a day that goes by that I don't pray for relief. And for understanding from the people around me.