(TW: Self-harm, Suicidal Ideation, Medical)
Hi, I’m Sky, and I’m a real-life fire bender. Not in a cool Avatar: The Last Airbender way but, so much as in the sense that I have a rare disease that makes me feel like there is molten lava always running through the veins of my leg. For those of you who’ve been with me for a while, you probably already know that in 2020 after a fall down the stairs, I was diagnosed with a condition called CRPS or Chronic Regional Pain Syndrome type 1.
It’s a chronic nerve pain condition that’s most often caused by a traumatic injury. To simplify it a bit, when you get hurt, your nerves send a signal to your brain to alert you to the fact that there’s something wrong, and you should fix it! Once you fix the problem, those signals stop because your body is no longer in danger. Simple, right? But with CRPS something goes wrong, and your nerves never stop sending those pain signals back to the brain. They actually magnify and multiply over time, until what you’re left with is a constant burning sensation that’s worse than the original pain of the trauma.
For me, personally, my pain presents in the feeling of lava or fire ants in my veins chewing me apart. “Lightning strikes” that race up and down my leg. Debilitating muscle spasms, like the ones that kept me up until 6am. Angel was literally in tears, holding me down, while I was screaming. I couldn’t control what was going on with my leg, all of the muscles were strained as tight as they could go, twisting, and writhing, and there was nothing I could do about it. I don’t know how I didn’t wake up the rest of the family. But for awhile there, I legitimately thought I was going to have to have her take me to the hospital- tomorrow morning’s surgery be damned.
CRPS is thought to be one of the most painful conditions that a person can have. And on the McGill Pain Index, CRPS ranks higher than childbirth and amputation. That’s why CRPS was nicknamed the Suicide Disease because so many people with it, choose to end their own lives to escape the pain. Due to its rareness, it’s not very well understood, so as a result of this there is no cure for CRPS. However, there are a few different treatments that can be tried. For me, so far, we’ve tried medications like Lyrica, multiple sympathetic nerve blocks, and the DRG implant that I got put in last year- and will have revised at 7:30am tomorrow.
I’m not looking forward to having surgery, like I said in my last post. I don’t like needles, or doctors, and I don’t like hospitals. But if I could decrease the amount of pain that I’m in daily that would be great. Yet, I can’t help but be apprehensive about it. There have been too many promises made over the past couple of years saying that this, that, or the other will help me to achieve a more pain-free lifestyle but, so far, those promises have done nothing but fall flat. The medications haven’t helped. The nerve blocks haven’t helped, and so far, the DRG implants haven’t done their jobs either. It’s making me wonder if there is a world out there where I am not in pain all the time.
My doctors may not always see it but, it’s there. It’s there at 3am when Angel is holding my hand, holding me down, and trying to force my leg into a straight position so that my knee doesn’t dislocate when it locks up. It’s there when I’m biting down on pillows, and my own lips to stop from screaming, when I’m digging my nails into the bed and gripping the sheets until they snap and break. It’s there when there are tears rolling down my face, and I’m trying to laugh and joke about the “croissant foot” with her, so she doesn’t start crying. It’s there when she finally falls asleep, and I’m laying in bed until the wee hours of the morning by myself, trying not to scream, or cry out in pain when it grabs me like a vice grip and doesn’t want to let go.
But most often times, doctors and nurses get to see the put together version of me. The lie, the mask. They get to see me when my hair is brushed, and either braided or put up. They don’t know that it is the first time I’ve showered in a week, or that my hair will stay in that style until it is a matted, tangled mess, because I just don’t have the energy to do anything with it. They get to see me wearing people clothes- or as close to people clothes as I can manage- with socks, shoes, leggings, and a shirt, or hoodie. They ask me their questions, go through the vital signs, and I smile or laugh, and occasionally make a snide or dark comment about how an 8 on the pain scale is a good day for me. Sometimes, if they’re a good doctor or nurse, they see it and believe it. But due to the way the 1-10 pain chart that you find in most offices looks, they don’t believe it.
They see someone who is an 8 on the pain scale as rolling on the floor, crying, unable to think straight. Someone who is in the hospital, begging for relief, maybe after a trauma, or a sickness. But, you know what they don’t see? A 27-year-old limping along in their berry-colored rolling walker, dressed in spiderweb pants and a Halloween Mickey Mouse hoodie. Someone who smiles occasionally, laughs, or makes half-assed jokes about how hard it’s going to be to get blood out of her without blowing a vein, or multiple tries. My 8 is someone else’s 100, and while there are times where I am writhing around, screaming, and crying and begging to die, or begging for it to stop… you have no idea how often I’m masking all of that.
I mask the pain behind a pleasant smile, and a dark joke. I hide it there because if I were honest about how much pain I’m in, I would either be labeled suicidal, or a drug seeker, and I am neither of those things. Not once have I asked my doctor for narcotic pain medication, and I won’t do it. Even if they offered it, I probably wouldn’t take it because I know the statistics, and I know that I am more than likely to develop that addiction to those medications. Because when you are in constant pain every second of every day, there comes a point where the only thing you can think about is making the pain stop or making it less. Making it bearable. So, honestly, they can keep their narcotics… because it’s just another mask for me to wear. One that I don’t have any interest in.
I have to go now, Angel brought me dinner, and now we’re going to watch more of The Haunting of Hill House. I know she doesn’t really like horror movies, and things like that but, I also know that she does it for me, so I can have something to focus on aside from the pain. I love her, and I’m so fucking lucky to have her.
Wish me luck tomorrow, I’ll update soon.
-Sky
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