Today we have an amazing guest post written by Rose B. Fischer who talks about living with chronic pain and how she no longer lets the pain control her life!
Let’s turn it over to Rose!
How I Stopped Letting Chronic Pain Control My Life
I call them “headaches of death,” and the first one came when I was 13. I was in health class. It was a bright spring day, and I was bored.
I stared out the window, looking at the sun and the trees. When I glanced back toward my teacher, a silver splotch swam in front of my eyes. I blinked a few times, but it didn’t go away.
Streaks of color danced around it, swirling so fast that if I focused on them, I started to sweat and feel sick to my stomach. I kept blinking, hoping that the light would go away. When it didn’t, I was sure that I had hurt my eyes by staring at the sun too long. My father always warned me about that.
When class ended, I walked to the nurse’s office. By the time I got there, the left side of my head felt as if someone had clamped a vice down on my temple. There was a stabbing pain in the center of my eye, and the eye socket was trying to split itself in half.
The nurse wasn’t allowed to give us any kind of pain relievers, and my mother couldn’t come and get me from work. I spent the day in a cot with my bookbag over my head, trying to block out as much light as possible.
The aura grew so big that it blocked half my field of vision. I couldn’t move without gagging or retching. At home, I swallowed pain relievers by the handful and got no relief. That lasted three days. The pain kept up for six days.
After that, I lived in terror. Any time I got a floater or a flash of sun in my eyes, I would clutch my face, squeeze my eyes shut, and try to beat down a panic attack. Oh God, no. Please, no. Not now. Not ANOTHER ONE.
At first, the headaches only came every few months. I could function and live the life I wanted to between attacks. When I got a little older, I researched migraine symptoms, but migraine pain is typically described as “throbbing,” and while my head did pound after the first and second day of agony, it felt more like some alien machinery had attached itself to my head and was trying to either drill a hole through my eye or break my skull.
In my late teens, the frequency of the headaches increased. A well-meaning friend told me that when she got a migraine, she took NyQuil. I was desperate for relief, so I tried it. It didn’t do anything for the pain, but it knocked me out. Good enough! The problem was, I still had to work and graduate from high school. I couldn’t spend weeks at a time in a NyQuil coma, could I?
By my mid-20s, my visual disturbances would dissipate in the first hour and the pain was less crippling. Attacks could last anywhere from 3-21 days. The long ones came in cycles, fading out and then erupting again, sometimes with a second aura, as if I’d gone from one migraine episode directly into another.
I was constantly exhausted, angry, on edge. Always waiting for the next headache to strike. I would avoid making plans or committing to new projects because I couldn’t be sure if I would get a headache. The worst was what it did to my mental and spiritual health. I didn’t care if I lived or died. I wasn’t actively suicidal, but I would have been quite happy to die so I could stop being in pain all the time. The only thing that kept me alive were my stories and the conviction that I had been put on the Earth for a purpose.
I’m almost 40 now and I’ve seen more doctors than I can count. Some say I have migraines. Others say I have cluster headaches. The symptoms are a mix of both, and they don’t respond to medication. I took so many pills that I was a zombie, but none of them worked any better than NyQuil. I’ve tried natural remedies and essential oils but have never found a successful treatment.
The biggest breakthrough in my chronic pain battle came when I learned not to fear the pain. My psychology professor also lived with severe, semi-debilitating migraines. We did a unit on pain management, and he told us that he had migraines since infancy. He grew up in an era when the prevailing medical opinion was that children didn’t get migraines at all. So, his parents were told that he was exaggerating or making up his pain for attention. He showed us case studies and statistical data that showed several people with the same condition who had all experienced chronic pain for more than a year. Some would report moderate levels of pain but feel they were unable to work. They would show symptoms of depression or even suicidal tendencies. Others would report a much higher pain level on the same scale but still hold jobs and maintain relatively good mental health. The difference always came down to how well and how often the patient was able to practice coping skills like:
- Positive Self Talk
Those who thrived with a chronic pain condition and felt happy with their lives were the ones who chose to control their symptoms and find ways to do what they wanted to do. The ones (like me) who let their pain run their lives became miserable because they saw themselves as having no control or choice in how they lived.
One night, I had a church event that I had been looking forward to for months, and I got a headache. My first instinct was to curl up in bed and cry with the frustration of having to miss out on what I wanted again. Then I decided that, no, I didn’t “have” to miss out. I still had a choice. I was going to go.
I won’t say it was the best evening of my life, but I stayed the whole time, sang, conversed with my friends, and was glad to be there. The next day I was so excited that I ran to my professor’s office and told him the whole story. He just said, “Sure. You can go to church with a migraine. You can do anything you want.”
There are still days when I have to stay home. There are days I don’t get any work done, and there are days I stay in bed. But all of those things are my choice now. I do them when I need to in order to take care of myself. They’re not my automatic, first response to a headache. Sometimes I am still angry, and that’s okay too. It’s part of life, and I want to live all of it. I’m choosing the life I want, pain or no pain.
Rose B. Fischer is an avid fan of foxes, Stargate: SG-1, and Star Trek. She would rather be on the Enterprise right now. Since she can’t be a Starfleet Officer, she became a speculative fiction author whose stories feature women who defy cultural stereotypes. In her fictional worlds, gender is often fluid, sexuality exists on a spectrum, and “disability” does not define an individual. She publishes science fiction, science fantasy, horror, and biographical essays. Be sure to check out Rose’s Blog!