Woman with closed eyes

Laying in bed, light peeks in from the porch light and highlights the wall in my bedroom.

My mind is racing. What will I do tomorrow? Where do I have to go? Does the dog need a bath? Will I finish what I didn’t finish doing today?

I won’t know until I wake up in the morning and discover what my pain level is — that is if I ever get to sleep.

These are the things I ponder when I’m in constant pain. There’s no sleep-filled nights, no well-rested mornings, just “what side causes less pain so I can sleep on it and did I get enough rest to take a shower in the morning?”

Chronic pain is making plans that benefit your pain solely… It’s wanting to go on a road trip to the Grand Canyon and knowing you will have to prepare by laying in bed for a week and not doing anything strenuous.

Chronic pain is having to cancel plans with family once again because no pain meds, heating pads or bags of ice, nor any of your 11 medications can touch the pain…

It’s letting down loved ones and being forced to read notes about how you let someone down, again.

It can be searing horrible, stabbing, gut-wrenching I-want-to-cut-off-my-leg-to-fix-it pain…

It’s spinal cerebrospinal fluid (CSF) pain, low CSF pain, lupus pain, fibromyalgia pain, high intracranial pressure pain, nerve damage pain, scar tissue pain… too-much-pain-for-one-human kind of pain.

It’s an “I’m fine” kind of pain. And I wish more people understood it instead of judging me for what kind of pills I use to “manage” it.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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I have chronic pain from an auto accident and other serious injuries. I also have chronic pain from various overlapping autoimmune diseases.

I’m not pleased about the chronic pain, but most days, I’m so accustomed to it that I’m able to live an ordinary life with the help of my family and friends.

Several months ago, I began to experience a different pain, this one in my mid-section near and below my belly button. I made various guesses as to what was causing the pain. Perhaps I was developing sensitivities or intolerances to certain foods. Perhaps I was experiencing a side effect of one of my medications. Perhaps I needed a colonoscopy.

Perhaps, perhaps, perhaps….

“Perhaps you need to get your scrawny little butt to the doctor instead of trying to diagnose yourself, Mama,” said my daughter.

My granddaughter shook her head and muttered, “That’s what I keep telling her, too.”

“Maybe she needs to start farting,” said my loving husband.

So, with the “encouragement” of my smart Alec family, I finally made an appointment and explained the situation to my primary care provider.

She examined me in that fun way that involves stirrups but no horse, then referred me to a gynecologist.

Two more stirrup exams, one abdominal ultrasound, and two stirrup ultrasounds later, I had my diagnosis: At least one large tumor, sharing a blood supply with my uterus and left ovary. The gynecologist gave me my treatment options and asked me to think about them, and then tell her my decision in one week.

I discussed those options with my husband and my daughter. They both wanted to do some research of their own before giving their opinions.

A day or two later, my daughter phoned me and said, “Hey, Mama. I found out something cool! Sometimes, these tumors have hair and teeth. Sometimes, they even have eyeballs and teeth! If the doctor takes out the tumor and lets you keep it, you put that thing on a leash and take it for walks around town. We’ll have to make it some tiny shoes, but…”

I hung up on her and laughed so hard that I peed my pants.

My family and I finally decided to choose a partial or total hysterectomy, so I returned to my gynecologist to discuss the surgery with her. She said that she agreed with our decision, but informed me that we were facing a wrinkle, “I have some concerns about your heart, and I need you to see a cardiologist and get clearance before I’ll perform the surgery.” Huh?

So, off to the cardiologist I trotted, toothy, hairy tumor getting a free ride, and went through yet another series of tests.

“I have some concerns about your heart,” I heard for the second time. “I’d like you to wear a heart monitor for a month. After I determine what’s going on in there, I’ll know how to treat the problem so that you can have the surgery you need.” Again – huh??

By this time, I felt a bit defeated and overwhelmed. I can’t afford to let myself feel that way for more than a day or two at a time, though, so I adjusted my attitude and returned to his office to be hooked up to the monitor and learn how to use it.

I sat in my office chair afterward, crabby and pouty and annoyed at having to wear the thing. Getting up to walk around my house while wearing it took some getting used to, that’s for sure.

Late in the afternoon, one of my best friends phoned. She said, “So. You have the heart monitor now, yes?”

“Yeah, I’m wearing the damn thing.”

“And just how many times have you gotten the cord tangled on a doorknob today and been yanked back into the room?”

“Um…five.”

“That’s just what I expected! I should’ve made a bet with somebody!”

Once again, it was time for me to adjust my attitude. I asked friends how I should explain the monitor to nosy strangers. My favorite answers:

“Say it’s the Lost Ark, and if they kept staring, it’ll open and kill all who look.”

“Get fidgety and secretive and tell people, in a whisper, ‘I’ve been tagged to do covert surveillance for The Agency. Stay close to me. You’ll be OK.’ Then look around like you’re expecting trouble.”

“Tell them you just escaped detention in the middle of a lie detector test.”

“Tell them it’s your portable alternative fact generator.”

“Tell them it’s to keep the government from reading your thoughts.”

And, from my granddaughter, “I dunno. I just want you to take off your shirt so I can figure out how you’re all hooked up.”

I’ll have days when I’m bummed out again, even days when I feel sorry for myself. Today is not one of those days. Today, I’m chuckling in gratitude at all the goofy, irreverent people who care about me.

Sometimes, a girl’s gotta laugh!

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It’s 3 a.m. Pain has awakened me and this is always when it is the worst for me. When I wake up in intense pain, in the night, for some reason, it’s worse than when the same pain is there, or hits suddenly when I wake up in the morning, or during the day.

In the night, I am afraid. My defenses are weakest. I feel more vulnerable than at any other time of day.

When it’s really bad, when my entire body is in so much pain I cannot move and fear takes hold of me, here’s what you need to remember, my exhausted, medicated, terrified, panicked, and somewhat broken self:

You will get through this.

Again. 

Sometimes you feel like this will be the time that you will not survive.

You will. 

In my heart, I know to trust myself, to believe in myself. To listen to myself. But I cannot fully hear because my mind, my body, it’s so full of noise. Of pain. So much doubt, worry, and, fear, drowning out my inner magic. My courage.

It’s still in there.

Be strong wildflower, even though you are afraid. You have come so very far. You are on a journey and not a mad dash to a destination. Sometimes, the destination isn’t even what the journey is about. And on this journey, even though at times you don’t feel it, especially right now, you are doing just fine. Trust in yourself and your ability to persevere, no matter how dark, uncomfortable, or scary this journey may be.

And although your body feels like a prison, do not lose hope. Keep struggling. One day you’ll see how worth the struggle all this was. You will wake to see another day, and you will wake to hundreds of tiny blessings. You’ll awake to your dogs wagging their tails, a kiss from the man you love, a conversation full of laughter with your best friend, a sunset that takes your breath away.

Don’t forget everything you still have in this moment of fear and despair.

Cry if you must.

Allow yourself a moment of grief.

Allow yourself a moment of fear.

Then let your tears wash it away, for now. For tonight. And allow yourself to rest.

Even the greatest warriors have their moments of weakness.

Just remember this too shall pass. And morning will come. And this will not be the last 3 a.m. you will find yourself on the bathroom floor, shaking, crying, screaming you can’t do this anymore.

But when it happens again, you’ll fight.

You will continue to do it, because you are stronger than any battle you are facing.

Especially when you don’t feel it. 

When you feel at your weakest – you are actually at your strongest.

It takes great courage to fight a battle that takes everything you have, and know that you will fight it again and again.

But to do it anyway. 

You are stronger than your pain, and your fear. And you are braver than you’ll ever realize.

And this 3 a.m. will not be the one that gets the best of you.

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I was home on my 19th birthday, miserable and unwell, when there was a cautious knock on my door. I opened it to stare into the faces of my schoolmates before spotting the mastermind  – my good friend Eunice. I let them into my messy apartment in my crumpled pajamas, and we sang happy birthday to the girl who wanted to throw up on her cake.

The presents were fabulous because they were so thoughtful. I’m sure many teenagers dream of being in a band, and I was no exception. They delivered a rare, left-handed bass guitar right to my doorstep, complete with amp and wires. To top it off, they threw in an acoustic guitar, because choices are good, right? So now I had two guitars, when one was more than enough for my tiny hands.

Eunice also planned two other surprise birthday parties for me with more fabulous gifts. I owe my memories of turning 21 on the beach to her. She had managed to gather my good friends from all walks of life, and the beautiful Calvin & Hobbes collection they gave me is still treasured to this day. (If you like, I can give you her number for a small fee.)

Then there was the time I planned my own 27th birthday party. You know, a few easy drinks after work at a relaxed Spanish bar. Isn’t that what “normal” people do all the time? What could go wrong? Apparently, everything. I realized that for me, strong painkillers are just expensive Tic Tacs. The full-blown chronic pain experience was going to induct me as a permanent member that night.

So I went to work with a flare, and by 7:00 p.m. I felt bushed. But it was my birthday, damn it! I wasn’t going to let a little pain dictate my life! I have pictures from that day of me with a big smile looking happy. Pictures speak a thousand words, my ass. The night went downhill at top speed, as it tends to do come nightfall. I went to sit near the bathroom, pretending I was waiting for my turn. After another torturous hour, I knew I had to leave my own party or risk breaking down in front of everyone. By then it felt like there were thick nails pounding through my muscles deep into my bones, throbbing in dull monotony. I rubbed my flesh until it turned a raw red.

This incident is where my phobia of being stuck in town late on Friday nights comes from. There I was, hunched over the sidewalk in agony, while my friends, Shree and Sacha, attempted to hail a cab. After another long hour and a nasty run in with a careless driver, cost no longer meant a thing and I booked a black Uber cab. (It was still new back then, so that was all they had.) Homewards we rolled, looking all fancy. People staring from the outside had no clue how much pain I was in.

Being at home provided no relief, except for the freedom to sprawl on my bed in unglamorous positions, bawling like a baby. My mother and sister fetched endless tubs of ice-filled water and massaged my sore arms. I remember sobbing and begging, “Mommy, help me. Help me, please!” But there was nothing she could do, and I could hear the heartbreak in her voice. I can’t remember, but I believe we went to the hospital that night. My most memorable birthday, for sure.

Come to think of it, the birthdays I remember in technicolor detail are those where I was in significant amounts of pain. Where time slows to a crawl, and you soak every second up like a sponge. Where my friends showed me what true friendship is about. Where false countenances are all put aside, and people are kind and sincere. Now that the pain has faded into a pale imprint in my mind, those are my favorite birthday stories.

This post originally appeared on Medium as part of a #100WritingDays project. 

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6:15 p.m.

“Shit,” I mumble as my leg gives out from the shooting pain striking through my body like a lightening bolt.

I rarely curse unless it’s when I write about something that upsets me or when I’m in terrible pain. “Rarely” changed to “several times a week” when my chronic widespread pain came about.

6:20 p.m.

I make my way over to the couch, carrying my pre-made dinner in one hand and a salt shaker in the other. My pain dictates where I sit every night. Sometimes my neck is killing me and I need to perch at the dinner table where I probably belong. Other days my shoulders hurt or I am dizzy from a skewy autonomic nervous system disorder and need to recline further on a couch. Not long ago I had a lucky streak and thought things were taking a turn for the better. Those days I got to choose where I wanted to sit and whether or not I wanted to get out of the house.

6:24 p.m.

It’s hard to eat when you’re nauseous, but severe pain rarely comes without a guest. The headaches are the one I dread the most, but neither symptom is a fun one to deal with. I think about my physical therapy and how it’s three days away. I don’t feel like I can make it that long without having needles stuck in my arms and wiggled around in the giant, painful trigger point knots until it hurts so much I want to scream, but the aftermath of dry needling is worth the pain I go through of getting it done. My arms stay painfully sore for 24 hours after, but my chronic pain levels do drop significantly for several days when I do get needled.

6:27 p.m.

I should document the pain I am having in my “symptom journal,” but quickly stifle the thought. It’s ironic after all; it hurts my arms to write down the problems I have all day, and frankly I am in pain almost all day, every day, so what’s the use?

6:45 p.m.

I can’t take it anymore, and decide I need some sort of relief. It’s either doing my postural series, or taking a hot bath. Going to sleep early isn’t an option, as it just means lying in bed several hours before my body lets me drift to sleep. I’ll opt for the bath. Again.

p.m.

I used to love taking baths to unwind after a long day at school or work. My eyes graze over my past sanctuary, and I think back to how nice it was when the calm, warm water felt relaxing over my skin. Tears well up in my eyes as I write this, as I don’t remember the last time I have felt “relaxed.” The last time I sat on a fluffy bed I thought about how nice it was that I could actually fall asleep somewhere other than the bed at home I have taken years to improve as my symptoms got worse. I don’t remember the last time I genuinely felt comfortable somewhere.

7:03 p.m.

I slip into the hot water and quickly decide I need more cold if I don’t want to pass out. Postural orthostatic tachycardia syndrome (POTS) can be very finicky, and I don’t want to have a new problem — possibly drowning — on my hands. I have enough medical issues to deal with right now, thank you very much!

The water cools down quickly and I lean back onto the towel-pillow I made at the edge of the bath. “Gossip Girl” is playing softly in the background, but I quickly find that I can’t get comfortable enough to watch the screen in the tub. I turn off the iPad and turn on “The Kane Show” podcast I had been listening to for the past several years.

I close my eyes and lean back. Pain shoots from the base of my neck to my head, and I twist and turn until I find a spot that doesn’t hurt as much. At least this will be good for my arms, I think to myself as I float them back and forth in the warm water.

7:16 p.m.

Everyone tells me water is therapeutic, and I finally start to agree. My muscles are slowly calming down and I feel like I can actually think.

7:50 p.m.

My 47 minutes in heaven are over. I have to get out of the bath now, unless I want to look and feel like a prune the rest of the evening. Plus the position is terrible for my aching neck, and I don’t want to trade one pain for another. I have learned a lot about ergonomics in the past two years, and wish I had known about them before my first several bouts of chronic pain.

Now I am very careful to prevent any kind of pain I possibly can. I feel pretty high maintenance when I go out with friends, but they at least understand and can forgive me for it; pain, on the other hand, cannot.

8:03 p.m.

I’m in my PJs and ready for bed, but can’t go to sleep yet. It gets tiring flipping back and forth, as I never have a comfortable position, and I don’t have enough energy to do this for more than two hours. My body doesn’t usually let me fall asleep until after midnight, so I go downstairs to wait.

8:05 p.m.

I open the Facebook app on my phone to take a look at the world I was once a part of. I’ve always realized life on this website isn’t really realistic, but I believe my guess that the majority of my 20-something friends don’t face chronic medical issues every day. Some of them do, though, and many of those people look like they are “normal.” I know that better than most.

8:06 p.m.

My arms hurt. I snap my elbow and realize I need to go back to my world. I close the app and turn to the television.

8:08 p.m.

I realize nothing has helped as much as I had hoped. I heat up my herbal neck pillow and rest it on my neck.

Different nights call for different activities, but on really bad evenings I can’t really think and will tune in to an audiobook, catch up on whatever reality TV show I’m into, or visit with friends. Almost everything hurts — I can’t read or write, as both of those involve some sort of use of my arms — but I always try to stay optimistic and realize that one day I will have a day where I feel good again… Just not today.

I searched the document and the word “pain” was listed 21 times in the two-hour time period I documented. Instead of editing it to make it more readable, I left the number because I felt it touches the surface of how hard it is to deal with so much pain, day in, and day out.

Twenty-two.

This blog was originally published on Single in the Suburbs.

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