What would you do if before your eyes you saw the heads of your loved ones take the forms of hideous monsters, wild dogs, hellish demons? What if the skin on your arms and legs was crawling with bugs, your veins were made out of worms, and the very seams of you were splitting open and spilling out a bloodied mess? Your dreams felt like reality, and reality felt like a dream. The corners of your vision was growing more and more dim, your heart was racing, and all you could think was, “is this what dying feels like?”
I couldn’t breathe. My breath was making the great escape, leaving me terrified and gasping in its absence. I clawed at my face, my hair was alive. I had to keep it away from me. I reached for my family, wanting to touch them to know they were real, afraid of the way their eyes kept turning into gaping black holes that drew me into them. Those holes were the end of everything, the beginning of something terrifying, a nothingness, a completeness of emptiness. Their speech was mechanical; their language alien – only a part of me could understand it. Did that mean I was a monster, was I just like them? Each heartbeat sounded like a thunder clap. I smelled colors. I heard the lights. And through it all, keening sobs shook me until my muscles were sore, scaring my family, scaring myself. I tried to stop myself. I tried to breathe. I couldn’t do either. I threw up again.
Do you think I’m a drug addict? Do you think I’m crazy?
I’m going to write today about something that’s very close to my heart, something that’s so personal, I feel embarrassed just rereading what I’ve already written because of how accurate a description it is of my thoughts. Time to be brutally honest.
I was diagnosed with CRPS in January 2010. For the past 11 months, I have been on more medications than I can even remember, trying to find that perfect combination of drugs that would ease the pain in my body. Each one was a process, each one took time to sink into my system and work with my body. Most made little difference to my pain, but I did notice some changes. Headaches. Weight gain. My skin changed. I was tired to my very bones all the time, only ever wanting to sleep on my free time – on any time really. I was finally put on a combination of 225mg of Lyrica and 60mg (the highest possible dosage) of Cymbalta each day. And this is when I breathed a prayer of thanks – I was finally, finally feeling the relief I’d sought for so many months. My leg felt better, my attitude was better, I was happier. I stopped thinking of death so often. But then I noticed, the side effects persisted, worsened. I have never been a heavy girl, but during puberty, my weight was a sensitive issue for me. Once I started college things became better, and I lost about 30 pounds in 2 years leading a more active lifestyle. Leveling out at a mere 5’2” (on a good day), I can’t afford to have extra pounds attach themselves wherever they feel like it. But then I began this medication. And before too many months had passed, I once again became even more uncomfortable in my own skin, in my own clothes. I hated how everything looked. I hated every photograph taken, and I watched in dismay as my self-esteem began to plummet. I longed for company; I dreaded to have visitors who had known me in past months. Every day was a pep-talk as I got out of bed, as I got in the shower, as I chose clothes for the day. “Randi, be thankful you are finally feeling better.”
But then, I began to wonder. Perhaps physically I was feeling less pain, but did that necessarily mean I was feeling better? Did one benefit outweigh the sacrifice in another department? Call me vain, call me stupid, superficial, someone who doesn’t have their priorities straight. But if you are or have ever been a young woman, then you know that maintaining a certain amount of self control, of security in yourself is important. And what was so frustrating is that I was cutting back on my food to the point where I was always hungry, living off of mainly cereal for breakfast, and cereal for dinner. And still, my clothes were tight. How was this fair? How was this happening? I didn’t used to have to be this careful.
Embarrassed, I brought it up to my doctor, and to my physical therapist. “Lyrica or Cymbalta alone would most likely cause weight gain in young women. Together? It’s expected.”
In addition to this, I was so tired from my medication that each day when I got home from my short work day, I would sleep all afternoon. I would wake up to the darkness, stay awake for a few more hours, then go to bed. It felt as if my life was passing before my eyes in a monotonous, dull, grey blur. My life was wasting away as I slept. You know the phrase, “I can sleep when I’m dead”? It felt like I already was dead. Was this what “feeling better” felt like? I wanted out. I wanted to be in control of my own life.
And so I began to wean myself off of my medication. Slowly, skipping doses, and finally switching to every other day. The pain came back, and so did daily headaches. But I was in control this time. My body, my life, my choice.
And then, finally, I stopped altogether at the beginning of this past weekend. And things were going ok, all things considered. Or so I thought.
By Monday, I began to sweat profusely all the time; I was icy to the touch, clammy. My vision changed. I had begun to have nightmares, horrible nightmares of dying, being alone, having everyone I loved dead and gone. I’d go to sleep crying, I’d wake up crying. I didn’t want to get out of bed, see anyone, do anything. Life goes on, whether you want it to or not, and as I drove to work, each passing logging truck and car felt like it was driving straight through my brain. I realized this would be my last time driving for a while, as I couldn’t be stupid enough to jeopardize myself or others’ safety. I assigned the students silent projects and guiltily rested my head in my hands, sweating through my short sleeved sweater and listening to the rain drum outside my window. I came home and went straight to bed.
The following morning I dragged myself out of bed and got into the shower. I jumped in pain as my brain shocked me, a pain so sharp that my vision went dark for a split second. My skin hurt, My scalp felt bruised. I climbed out, pulled my pajamas back on, and sat in front of the fire after leaving my cereal in a puddle in the sink. My mother came to me and placed one hand compassionately against my face, and I burst into tears. Funny how that doesn’t take much these days.
I tried to pull myself together, hoping to avoid that “just cried” look at work. But I couldn’t. The sharp shocks deep within my skull were so painful, so startling, and so disorientating that I just couldn’t stop.
Work had to be called, last minute substitutes were arranged. I went straight back to bed.
I didn’t awaken until the afternoon. I slowly sipped a cup of coffee, I ate a sandwich. I was dizzy, and my head pounded. But I felt better than I had in the morning.
Our family had been wanting to get a Christmas tree for days, and when I looked around and noticed that we were finally all in the same place at the same time, I realized it would be the perfect day for it. I thought I could manage a short trip to a tree lot, and a quiet night at home decorating the tree. So I walked downstairs, put some clothes on, and came back up. Those 10 minutes cost me dearly, and I was suddenly so nauseous I had to pause on the staircase and hold the rail. I didn’t want to be the cause of ruined plans. I walked to the car. I closed my eyes as I buckled my seatbelt, not speaking, as every time I opened my mouth, I cried instead.
We made it about three miles before I demanded we pull over on the windy two lane road, leaped out of the passenger seat, and threw up in violent heaves in a pasture. I began to cry at the same time. Are you surprised? I heard a noise, and looked up to see four cows watching me curiously, slowly chewing their cud. I laughed at the absurdity of it. I cried. I threw up again.
We turned the car around, and I barely made it back home before I threw up again in the yard. I stumbled to the house, my brain shocking me with a frequency that matched my heartbeat now, making it hard to stand. For the next few hours, I became worse and worse, fits of hysteria took me in waves.
What would you do if before your eyes you saw the heads of your loved ones take the forms of hideous monsters, wild dogs, hellish demons? What if the skin on your arms and legs was crawling with bugs, your veins were made out of worms, and the very seams of you were splitting open and spilling out a bloodied mess? Your dreams felt like reality, and reality felt like a dream. The corners of your vision was growing more and more dim, your heart was racing, and all you could think was, “is this what dying feels like?”
I don’t think I have ever been so scared.
Thinking of it now, I know those days were real. I knew it was happening, I knew what I sounded like. It’s not as if I have no memory of it, but it does feel as if I was watching it happen to someone else. If I have ever genuinely feared that I was going to die, it was that day. And through it all, all I could think of was, “I can’t go back now, I can’t go back now, or I’ll have to start this all over again.”
I still wanted out.
Since then, my family has done research on Cymbalta withdrawals. These are something the commercials and doctors never mentioned, not ever. Side effects, yes. But what happens when you go off of it? No, they were silent on this. There are pages and pages and pages of cases similar to mine online, cases that sound more like something a hard core substance abuser/addict would experience rather than 23 year old, clean cut, school teaching, God fearing me.
I write this as a warning, as a proclamation, confession, educational tool, a desire to have people understand. I understand medications are wonderful for many reasons, and for some people, a necessity for quality of life. But for me? Now, knowing how hard it is to get off of it..it makes me want to be completely rid of it more than ever. I want to be me, and only me. I want to understand what I’m feeling, why I’m feeling it, and not have to attribute it to something else inside of me. If I feel pain, let it be my own.
So where am I now? I’ve missed several days of work, and was placed back on the medication until I could get off of it “under a doctors supervision” in January. My mother is helping me in my small form of rebellion by cutting my pills apart and painstakingly separating the tiny particles inside so that I can take only half dosages each day. I honestly don’t know what happens now.
I guess we’ll find out together.
*Lyrics by LIT
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