'Are You OK?': Getting Through the Day With Fibromyalgia

My hand’s shaking. No, not now. I can’t.

“Mrs. Auwarter, did you hear me?”

“No, I’m sorry, honey, please tell me again.”

Stomach clenching. Did I eat this morning? Yes, crackers, scissors cutting at my stomach lining.

“So, can you help me?”

“Wait, sorry, could you tell me just one more time?”

Her eyes roll, and I concentrate on my student’s face. I will understand this time.

“Is this sentence right?”

I look down. English? Oh, good, I understand that. It’s fuzzy though. The words aren’t naturally fuzzy. I feel warm.

“Is it warm in here?”

My student looks up, staring. She is wearing a hoodie.

“Are you OK Mrs. Auwarter?”

“Yes, I’m fine. I just, I feel warm.”

“Are you sure you are OK?”

Ha! Am I sure I’m OK? What do you mean by OK? I am sitting here not passing out. So, yes, I’m OK?

The bell rings. I thank God and rest my head on my desk. I’m just going to take a short nap. Just, oh, there it is again. Hello, Pain, my old friend. Oh, ow! My back. I can’t sit. I have to… move, just a little bit. Oh, no, bad idea. My joints are screaming at me. Maybe if I just move a little more I will be…

“Elizabeth, are you OK?”

“Yes.” Was that too high-pitched? Did she believe me? Can she stop looking at me?

“Is today a bad day?”

I lean on my desk to stand up.

“It’s fine.”

“Are you sure? You look flushed, and… maybe you shouldn’t be standing?”

“I just, I need a walk.”

My co-worker nods in understanding.

I make it out of the room. Quite the accomplishment. The air is cooler in the hallway, less suffocating. I can feel my joints calm to a dull roar.

It’s coming back, you know. That pain. You’re not done with it today. Not by a long shot.

I just have to stop thinking about it. If I just push it to the back of my mind…

And… it’s back.

I’m just going to keep walking. Oh, I feel dizzy. Please let it not be like back when I was a college student. I can’t do that again.

“I don’t feel so good.”

A concerned hand reaches out toward me.

The floor? How did I end up on the floor? Now my body won’t stop moving. Make it stop! It hurts!

“I’m going to get a ride for you to the hospital.”

“It’s psychosomatic,” a doctor explains.

My heart thunks to the bottom of my stomach. You’re telling me this is all my fault. I did this to myself? How cruel can I be? My father has to help me to the bathroom. Is that something I would volunteer for? Do I want to humiliate myself?

“Don’t worry. We will get to the bottom of this,” my mom counters.

After the hospital, doctors and doctors and more doctors.

You have anemia. You have antibodies against your intrinsic factor. You have depression. You have anxiety. You have insomnia. You have night
terrors. You have Vitamin D deficiency. You have Vitamin B12 deficiency. You aren’t getting stage four sleep. You are pre-diabetic. And my personal
favorite doctor question…

“How did you get out of bed this morning because of your (pick one of the above)?”

I have skills, man. Skills.

And I’m still walking down that very long hall. Wait, did I take all my pills last night? I can’t remember. I didn’t sleep very well, so I might not have. Then again, that may have been my acid reflux acting up. It does that when I eat chocolate. Did I have chocolate yesterday, or was that Saturday? Was I supposed to be carrying anything right now? I feel like I am forgetting something terribly important.

It will be OK. All you have to do right now is walk. You are doing a wonderful job doing that walking thing. You could be a professional walker. They don’t have those, do they? Oh, yeah, speed walkers, but they can’t randomly hold onto something to keep balance. So, that’s out as a career option.

It’s OK, all you have to do is make it to your next class. And sit down. Baby steps. Just breathe. In. Out.

A teacher rushes toward me.

“Did you hear back from Mr. Parent about the super important issue?”

Which parent is this? Which student?

“I’m sorry, what?”

“Mr. Parent… the issue?”

“Oh, yes…”

Give myself processing time. It will come to me. Ah, there it is. Ding!

“Mr. Parent said that it was absurd and that he would like to have a parent/teacher conference.”

Shoot. I forgot that conference was today. I need to reschedule my plans so I can stay after school. Where’s my journal and pen? If I don’t write this down in the next five seconds it will leave my brain.

“Are you OK?”

Where is my journal?

“Yes.”

I’m pretty sure my voice squeaked on that one. Definitely did. I’m getting the look. The “I feel sorry for you and don’t really understand what is going on” look.

“Are you sure?”

No, I’m not, and I get more unsure the more you ask me, so stop asking me!

“Mmhmm.”

“Have a good day!”

I will. Oh, hello, stomach that just swallowed 15 giant bouncy balls with an extra side of bounce. I think I’m going to be sick.

It was that ice cream I had last night. I’m sure of it. I knew I shouldn’t have eaten it. No, I just thought about eating it. I didn’t eat it. It’s not in my calorie counter. Yep. Not there. So, what is it? Oh, my face itches.

“Hey hon, how are you? You look like you could use a hug.”

Please tell me that is an empty threat, and you will just keep walking. Keep walking. Please keep walking. Please! Oww! No! It burns.

“It’s been hard. I know.”

No, you don’t. Just, please. Get off me. You’re hurting me. The pain is spreading. You are squeezing it out into my whole body. Please stop.

Back pat. Oh, no, please. The tingling starts in my upper back. Another back pat. Now it is prickling, soon it will be shooting, and… there it goes. My whole back is on fire. Great.

“Feel better soon, OK?”

Yes, because I can just get better from a chronic illness. You expect me to though, so I’ll try not to disappoint.

And we’re still walking. Yes, walking. Walking is good. I made it to school. I am at work. That is an accomplishment! I am not this pain. It is something that happens to me, but it is not who I am.

Oh! I have Physical Therapy today. I used to dread that, but, now, I look forward to it. They stick needles in my back to break up my stubborn clenched muscles. The doctor I just started seeing recommended it.

He was the one who diagnosed me with fibromyalgia. He assured me that it was real, unexplained pain. Real! It is not all in my head. Unexplained, they don’t understand it much like they don’t really understand headaches.

My last meeting with him was very encouraging. He said I had accepted the diagnosis well, embraced it, and seemed to be on a good path for managing my pain. I still have some doctors I need to see about all of the elements that are finely balanced within the body to either contribute to or take away from my fibromyalgia symptoms. I’m just so glad I have a name for what my body is doing. But when I tell people that name…

“Oh, you mean you are in pain, like, all the time.”

Yes, but, it is a little more than that. I would not go so far as to call it a gift, but, because of it, I can sit with others in their pain and let them know I truly understand. My story can encourage others. When I started reading about other people who had fibromyalgia I had a sort of giddy feeling of, “No way, you too?” I felt I was learning to understand myself better and finding a community that understood what I meant by pain, confusion, forgetfulness and nausea. The term fibromyalgia (fibro) warrior is not a misnomer. It is a fight to get up every morning, but it’s a fight worth fighting. Every time I see the joy on people’s faces because of something I do or say that makes their day, it is worth the pain it took me to get here.

MORE ABOUT FIBROMYALGIA:

Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.