I Have a Disability

It has taken me a long time to say those words--to properly come to grips with them. Actually it has taken me more than five years to say that with acceptance. I am still angry and sad about it, but it is reality. And in order to move forward, I have to accept it. I, Grace Rogers, who once thought I was all-powerful and could do anything and had no faults or weaknesses, have a disability. That's hard to say. Even now. But I'm saying it.

To give you an idea of how someone with Fibromyalgia normally lives, I will summarize from a pain journal I have begun to keep in order to have enough documentation to get Social Security Disability.

9am-12pm (depending on the day and my doctor's appointments etc.)
-wake up
-hit the snooze button
-start feeling the pain and stiffness
-fall back asleep
-alarm goes off again- hit the snooze as many times as possible, thus ending up late to practically everything
-don't want to get out of bed and face the day now that the pain is getting started

-finally get out of bed
-stiff muscles, joints, usually walk hunched over
-feel like I'm 84 rather than 24
-debate taking hot shower or just slathering on ben-gay. even with a hot shower, which reduces the pain temporarily, the pain immediately comes back as soon as i step out of the warm cocoon of the steamy shower.
-wash face, brush teeth, take shower, etc.
-sometimes put on a therma-care patch or ben-gay patch, but only if the pain is really bad. the patches are expensive, and since i have no job and no health care, and since i'm still borrowing money from my parents (which i view as a failure on my part), i have to use them sparingly. this means sacrificing my comfort so that i can afford food.
-put on clothes. worry about the patch showing through my clothes, or the ben-gay patch showing over my neckline. usually put a scarf on, because i hate the inquiring comments.
-eat something. usually very little. like an apple or banana. sometimes i have gluten-free waffles and a smoothie.

12-5pm
-get on the computer to look for jobs. finds this increasingly depressing. beginning to feel very fatigued, but then again, i'm always tired.
-give up on job-seeking
-give up on seeming happy for friends
-stay home and cry

5-7pm
eat dinner, and watch a movie or tv show (online)

8-10pm
-prepare for bath- this is a long process. First I fill a large stockpot with water and put it on the stove to boil. Then I fill the kettle and and another small pot and wait for them all to boil. Then I turn on the hot water in the tub. I fill it up until it stops being hot enough. I add 3-4 lbs. of epsom salts to the bath as well as essential oils sprinkled on the salts. Then I add the boiling water. I have to struggle to carry the heavy pot and every time I fear I'll trip and burn my entire lower half of my body-but this doesn't stop me. I always boil the water. If the water isn't hot enough, it doesn't touch my muscles as far as soothing them. Then I sit in the bath for 45 min. to an hour. As long as I can take it.

When I get out of the bath, I feel extremely drained, as if I might faint. I haven't fainted yet, but often wonder what fainting feels like, and if I might like it. Although if I were to faint in the tub, I'd drown. Which might be a lovely way to die, with all my bath candles surrounding me and essential oils. But I digress...I get out of the tub, and can barely stand. Usually I sit on the toilet for a while and wait for my heart to stop racing. Then I stand slowly, wrap myself in a towel and throw myself on the bed. I do not wash off the salts. The point is for them to soak through my skin. The next morning I will take a shower and wash off the salt and clean myself.

9-11pm
Now it is time for bed. I pick up my book and read a little (I am currently reading Lady Chatterley's Lover). Then I put on a thermacare patch (if i can afford it) and lay on my tempur pedic pillow (which my dear parents bought for me). Then I try to go to sleep. I am still in a lot of pain. Most times I will take a painkiller before sleep. Or I'll smoke some medicinal green (if you know what I mean). But that's also only if I can afford it. It does help with pain and Texas needs to legalize it for medicinal purposes so I don't have to sneak around like a criminal.

But the next day could be very different. I could be happy, in less pain, and hopeful. But it's a daily roller coaster. Even now I don't have the energy or hope to continue writing. I'll continue my pain diary another day. That's just a glimpse.


Sometimes I write in my journal. Here are a few excerpts from my journal dating back to more than 2 years ago until recently:

October 5, 2007
It's just that no one understands me and it's so hard to get through. To get up every morning is a challenge., Another day of pain. Another day of pretending I'm all right. Wanting so badly to BE all right.

November 25, 2007
I'm so sick of explaining to people what's wrong with me. No one understands. I hate my life. I'm so sick of being in pain all the fucking time. I'm ready to die. I keep getting strange feelings that I'm going to die soon. The other night I had a dream that I got married to someone I didn't love and desperately wanted to get out of it but couldn't.

January 31, 2008
Looking back at my old entries, I surprise even myself at how bitter I sound. And angry. I am so angry though. I'm trying not to be. I am very bad at trying to see the positive. I will try harder."

May 28, 2009 1:13am
I think I should start journaling again, even though it's a painful, tedious process- emotionally and physically. My old entries all made me cry--for different reasons... I'm so tired of being depressed and in pain. Actually, I could deal with being depressed if I wasn't in pain. I hate my life. I HATE my life! I just want to be better already! Nothing is going good for me. Everything is SHIT! I can't write right now because I'm in too much pain. I'll write later. Goodnight World.

May 29, 2009 4:25am
I talked to my dad last night and we both ended up getting frustrated with each other. I love my dad so much though. I really wish he didn't have Parkinson's. I always hoped and prayed that he would never get sick and that I would be the only one in my family with a horrible illness. Seeing him this past weekend at the conference made me want to cry because his tremors are so much worse. His arms and whole torso shake now. It used to be just his legs or feet. Poor daddy. Lord, why are you doing this to him?? And if you aren't doing it, why are you allowing the enemy to do it? My dad doesn't deserve this.

June 5, 2009 3:54am
My mind thinks so much faster than I can write. It's very frustrating because the thoughts race and I have to fight to remember my last thought. The worst is when it happens during a conversation. Brain fog- they call it. I used to be so much smarter...

...Even though I have so much going on right now, I'm still barely breathing--barely hanging on by a thread. The pain is horrible, excruciating, unimaginable. I can't even remember now what I was like before the pain. I don't remember the sensation of no pain at all. I can't wait for that sensation again. I can't wait to die... But what if I have pain when I die? I can't do that. I guess I'll just grit my teeth and suffer through it like I've been doing. Oh Lord! Please take away some of this pain! Obviously you're not going to take all of it, but please take some.

...Okay my neck feels like someone is stabbing, twisting, and stretching my muscles all at the same time. I can't believe I'm not jabbering like some insane animal yet. How long until I can't fake being human and normal anymore? How much longer until people see how tortured and crazy I really am?

...story of my life--death, gloom, despair, anger, resentment, depression, agony, torture...but with fleeting moments of happiness. Very fleeting...when will good things like love, happiness, security, reality, substance, truth, and assurance last? When will anything last? I don't want the world to end without experiencing true, ever-lasting love. I want the REAL things. REAL LOVE.

ALL YOU NEED IS LOVE! <3

June 8, 2009 6:32am
Every day I live in suffering. A silent torture chamber is my life. I no longer talk freely about my pain because I fear people don't believe me. If I talk about it too much, people start to believe me less, because I'm doing things like getting out of bed, going out, dressing up, smiling, dancing. These aren't the kinds of things a chronically sick and depressed person is supposed to do. They're supposed to be crying all the time, screaming in pain, and looking generally ill. I hate it when people say, "But you look great!" Oh, the curse of the outward appearance of health, beauty, and general well-being. They have no idea that on the inside I am a decayed, festering wound that never heals--in fact, it just gets worse.

June 18, 2009 3:28am
My head feels like someone is pricking it with needles. Lately I've been having a lot of needle-like pain all over my body. There's still the fire-like pain in the muscles of my back, neck, and shoulders too.

Nov. 7, 2009
I shaved my head. I shaved my head because I'm crazy. Or I'm crazy because I shaved my head. Normal people don't just go shaving their heads. I'm crazy because I'm in pain. Severe, excruciating, why-do-i-bother-living pain. Or I'm in pain because I'm crazy. Who knows? Maybe it's all the possibilities...

Accept help when you need it. Ask for it as well. Let your pride die. Let it die. You talk of wanting to die all the time. You don't want to die. But you have to let the pride die. Let it die. Let the anger, hurt, sadness, memories (bad ones) let it all die. Put them all in a room and give them each a gun and tell them to put it in thier mouths and pull the trigger. Funny how I won't do it myself. I want them to do it. Shifting the responsibility. Always off of me. And equating everything to suicide. I have a sick fascination with suicide. I want to do it so badly sometimes. But as much as I most of the time hate living, I much more abhor the thought of being dead. It's an unknown . An unknown that you can never come back from. It's permanent. And I wouldn't be in control. Control freak grace-that's me.

December 3, 2009
As I came home tonight I saw the framed photo of my sister and I as babies and immediately broke down and cried. Like a baby. Fell to the floor all dramatically and cried my tears all over the kitchen floor (I'm so glad I live alone, so I can cry as much as I want and as loudly as I want without having to stifle sobs in my pillow). Snot running everywhere. And I didn't care. I just bawled and bawled. My sister has a photo of the two of us on her desktop on her computer. I am so proud and happy. I feel like I don't deserve it though. Her love. I feel ashamed sometimes to be around my sister because she's so good and I am so not. Sigh...I love Acacia. She's the best. And I love myself. (I have to keep telling myself that anyway). My hand already hurts. Goodnight.


I want to be hopeful. I want to let go. But it's not that easy. You can't just trick yourself into being happy and okay with being in pain. The pain has to go first. THEN you can be happy. And all zen and pseudo-spiritual and all that blathery bullshit. Let's be practical first and take away this shit pain. Then I'll go on a long spiritual walk to find out what life means. But for now life means hardship, struggle, pain, and sadness. I'm just grateful for the small pockets of happiness and love- through my friends and family and creative interests like music, dance, art, and fashion--they are what keep me seemingly sane. And that will have to suffice for now. A semblance of sanity. A semblance of happiness. A semblance of normalcy.