Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group A Typical Day In Pain

This pretty much sums it up......


A Typical Day in Pain.....

Medieval torture on ghastly hooks. Knives flashing. Flesh tearing. Blood drowns agonized pleading. Scramble down, screaming. Run away. Fire choking. Run fast, faster. No. Can't. Slowing down. Slow … motion. Like quicksand. Trapped in terror. Can't escape. Chest burning. Can't breathe enough. Can't breathe. Can't. Like a vise. It hurts. Moaning. I hear moaning. I'm moaning. I'm dreaming. Wake up. Wake up. Wake up! Wake up!

Heart racing, head pounding, wild eyed scanning the bedroom, no knives, or quicksand. Breathe, breathe. Vise lets up a little. Pain bad. Burning. It's bad. It's a bad day. Pulsing. A bad day today. I can't afford a bad day. Throbbing. God doesn't care. It's a very bad pain day today. Aching. Good morning. You've got stuff to do.

I decide to get out of bed and eight to ten minutes later, I'm standing. Bad idea. I take some medicine and go back to bed for a few minutes. Get up. This time only three or four minutes and I'm standing. Shaky walking, but not using the walls, like last time. Legs feel like they're in cement. I try to go to the bathroom, nearly fall asleep on the pot, and then make my way to the kitchen. Coffee and reading the newspaper, exhausted, trying to ignore the thousand needles and the crawly things. It amazes me what people think is important. All that wasted energy. I can remember when I had energy like that.

The house is a mess. I'll clean it later. I promised to run some errands. Run? Hobble, limp, make it through. This car sucks. It's like a horse and wagon. Why has the weather been so bad lately—cold, dark, and rainy? What's that song line about the "cold hearted orb that steals the night, removes the colors from our sight; red is gray and yellow white?" Describes the weather and my mood. You know, I'd be able to park up front if I had a permit. Thanks for nuthin' doc. I hope household goods are near the door. These tile floors are wet and slippery. What were they thinking?

Can't find the kitchen supplies. Why isn't there an employee to help me? Bunch of kids standing around doing nothing. I find the manager and get some help. There's the supplies. Let's cash out and go.

Waiting in line. The volume's turned up on my pain; throbbing, pounding like the bass in this little gang-banger's car. Could they go any slower? Now an old woman counting out her change. Oh, for crying out loud!! Shifting my weight on my legs, sighs and small grunts, face drawn and tight. I'm afraid I won't make it. You can do this. Finally, it's my turn. I suggest they should have two open registers. The cashier frowns at me as the manager looks on and I see myself through their eyes—a frustrated, bit*#y, middle-aged woman, who thinks she's too good to have to wait.

I want to scream, "That's not fair! You don't know me. This isn't me. The real me died when the pain was born. This is miserable me." I can almost hear my mom say, "You never get a second chance to make a first impression." My heart sinks as I consider all the people who have only met the miserable, bit*#y me. I fight back tears walking to the car.

Compose myself in the driver's seat for a moment. I take more medicine with yesterday's Starbucks. Yuck. I realize I can't physically turn around far enough to see behind me and slowly back out, just hoping. Some dirty looks, but who gives a [**BLEEP**]. Now I feel empty and numb. I get some drive-through lunch so I can stay in the car and then on to my doctor's appointment.

It's business as usual there. Patient number 666 here. Happy to fill out the forms for the 200th time. Doctor's only running a half hour behind. What a shock. Pretty, young staff complaining about their boyfriends and the patient before me. I want to shake them and yell, "It's not business as usual. I'm in agony over here and you're supposed to do something about it!" How did this happen? How did I become an angry patient everywhere I go? Why can't I just get my refills over the phone? Because they want more money, that's why. They sure don't spend it on furniture. These chairs are like sitting in church.

By the time I get to the inner sanctum, I can barely walk or bend. I lie down on the exam table afraid I won't be able to get up again. He comes in on a rush of air, hurried, distracted. Look up, doc; I'm not in the chart. I'm right here. We discuss the procedure I'm having tomorrow. I describe some new symptoms but I can tell he's not really listening. He mumbles something about the procedure helping with that and leaves the room. So far, I got nine minutes of his precious time.

I realize he's not coming back. The nurse has to help me off the exam table. I have an appointment with the pain psychologist in a few minutes, but I cancel. I’m suffering horribly now. He'll probably think I'm being noncompliant. He sees me and asks a few questions in the hallway about the procedure tomorrow. I'll call to schedule a follow-up. I need to get home.

Somehow, I make it to my driveway without killing anyone and all I can think about is the couch. I am done, spent, and miserable. I hurt so badly. I feel sweaty and nauseated. Couch. Sweet couch. Here come the spasms as I start to relax. I turn the TV on for background noise hoping desperately to nap and then the phone rings. It's my daughter. She tells me how important it is that I stay busy and that I get out of the house more. She tells me about a friend who had the same problem and saw this doctor in Houston who got rid of it. She'll get his name for me. And maybe I should try this new church by her house. For the nth time that day, I want to scream, but I don't.

Tossing and turning, I don't sleep, but the pain volume settles into a steady, faded roar that I can mostly deal with. I did stop going to church sometime after my pain started. I pretty much feel royally shafted by God. I married, raised a family, and worked my a$$ off. I don't deserve this. I don't want to think about what I'm supposed to learn from this. I know bad things happen to good people, but this is just wrong. The old anger wells up at that woman for causing my injury in the first place, but I push it away.

I can't remember if I took my pain medication two or three times already, but I take another dose so I can do some light chores before my husband comes home. I tidy up a few rooms a little and decide to tackle the dishes. Partway through, a dish starts to fall, and I grab it before it hits the floor. Horrific, rending, excruciating pain that makes me see stars. Bile burns the back of my throat and I choke back the urge to vomit. Slowly, I make my way to the couch. Breathe. Breathe. Oh my God, what did I do? I'm so tense; every muscle in my body has a charley horse. The tears come freely now.

I'm devastated. I can't seem to do the simplest things anymore. I'm getting worse; not better. I feel so alone, so utterly, completely alone. I'm lost in my own private hell of pain and doctors’ appointments and trying to act as if I'm like everyone else. I feel like an alien, observing the rest of the world with this detached numbness that would become rage if I let it. I see it all so clearly now with true perspective and wisdom. Either you hurt or you don't. If you hurt, you’re screwed. If you don't, shut up. Get over it. It's not as important as you think.

The waterfall slows and stops. I hurt a little less, but I am exhausted in a way that a good night's sleep wouldn't touch. I feel vulnerable, open, and raw—like a child facing the closet bogeyman. Inexplicably, I dose off for a few minutes, awakened by a far-off voice that moves closer.

"Honey, you fell asleep. Were you making dinner or should I order?"

Even I understand how this must look. Feeling like a zombie, I stagger through the messy house, splash some water on my face, and start to cook, something, anything, while looking at the half-washed dishes.

Over dinner, he's complaining bitterly about his boss and some new project. I can hear the words, but I have to struggle to put them together and make sense of the story. Knife, fork, and salt—pick them up, and set them down. You see, everything is normal. You can do this. How was my day? I squelch the urge to tear up again.

"It was okay. I hurt a little worse today. I tried to keep busy."

He says inquiringly that we are invited to a poolside barbecue with some friends this weekend.

I shrug and say, "I'll try."

He asks if the doctors are helping me and suggests that maybe he'll come to my next appointment.

I say, "That's fine," knowing it will never happen.

We sit in front of the TV and I can tell he'd like some stress-reduction $*x, but he can tell it's not going to happen. We go through the hurt routine for the thousandth time. No guilt tonight. I sit and watch beautiful people doing beautiful things that I used to love and was good at. They take it all for granted. They don't know what they have, or that it could be taken away in a millisecond. Feeling abused and defeated, I trudge upstairs to bed, with an extra sleeper in my hand.

My meds kick in and as I begin to drift, I review some of the day's events and settle on the pain shrink for a moment. He asked if I was afraid I wouldn't wake up after the procedure tomorrow. He means well. He actually believes that because he read some books he understands me. But, he is really freakin’ clueless. I'm not afraid I won't wake up tomorrow..... I'm afraid I will.








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Michelle...
I hope you find relief soon,whatever it takes, please don't give up. Your post reminds me of a line or two from a couple of songs. In a Bette Midler song, 'Did you ever know that you're my hero', there's the line "beautiful smile to hide the pain" and from 'Let the rain fall down', a line says "cause sleep's the only freedom that she knows".
You deserve so much better than the hand we've been dealt.
I still believe the best thing one can do is try to help another (maybe to feel better). Like just before I read your post, with my low back and hips in total flare I massaged my wife (deep tissue massage) for more than an hour. My pain forced me to do the 2nd half hour from sitting near her. It allowed me some (a little) distraction from my constant aching.
Do you have only your rheumy or do you have a pain management clinic or pain specialist who might try you on different pain meds?
I'm praying and thinking of you alot today... hoping you get some relief SOON!
I'm the domestic @ home here and some/a lot here sounds like "a typical day" there.
What's been gettin me thru lately is my appeal hearing is in less than 2 weeks-been counting the days. It sure would be nice to make both ends meet again! COME ON DISABILITY$$, COME ON!
Write more later, keep in touch-Let me know if I can help w/ anything.
Take it easy, Russell

Michelle, I'm sorry you had such a bad day. I know where you're coming from and it really does suck. I can relate to a lot of what you said, and I just keep thinking that I need to get through today, and maybe tomorrow will be better.

I hope you start to feel better soon.

Hey Michelle,

Wow it sounds like the rain you guys were having last week has really settled into the bones. Not to mention the recent tornado which I am sure you have been outside trying to do some cleaning up.

Hope you get through the test and get some relief. It really sounds like Russell said you need to find a pain clinic or specialist to get you on some meds that work better than what you are on. Send me a pm or im this evening or tomorrow and let me know how you are doing.

Brent

Michelle,


Karen

Hi Michelle

I really hope you are feeling better.

Your description of your day was so well written I could feel all your pain.

I will be thinking of you, I hope the procedure scheduled for tomorrow goes well, please keep us posted.

Russell...Thanks for the pep-talk, it is much appreciated! I'm definitely not on the right meds for right now, flexaril, ultracet and I'm taking Tylenol & Aspirin but there's a big controversy going on here about pain clinics because after the hurricane a lot of people committed suicide and they used narcotics to do it. I went to Houston a couple of times but they were price gouging because they knew they had us over a barrel and to boot, local law-enforcement is making traffic stops on Interstate 10 and if they catch you with meds from the pain management clinic, you go to jail with serious charges, so I'm afraid to do that. All of our hospitals and doctors offices(the ones left standing) are so far behind, it takes at least four months to get in, I have one more month until my appointment with my PCP, the only other doctor I've had access to was in the ER when my kidneys crashed. Thanks again and I hope your disability comes through for you real soon.

Thanks so much Janet......

Hey Brent, I think you're right. I sent you a PM......

Karen big hugs to you too...Thanks....