I don’t even know what to say right now.
I don’t know what there is to say honestly because, every time I think too hard on this topic, I just want to scream. But instead… I get quiet. So quiet that, even the sounds of my own breathing is too much. So, I guess it’s fair to say that the topic I want to touch on today causes me a lot of internal and external pain, anxiety, and all-around discomfort.
For lack of a better term, I am a fucking mess.
Due to the injury that I sustained on August 21st, 2020 (10-months and 4-days ago) after falling down the stairs because someone left laundry on them… I developed a condition called CRPS. Chronic Regional Pain Syndrome. This is a rare neurological disease and type of chronic pain that effects a body part such as an arm or a leg after an injury, surgery, a stroke, or a heart attack. It’s also ranked among the most painful of all medical problems, and nicknamed the “suicide disease” because there is no cure for CRPS, and the effective treatments are very limited.
I know it must not help that I was practically begging my doctors to listen to me when I said I didn’t have a sprained ankle but, according to the ER doctors at two separate emergency rooms and multiple x-rays my bones were fine. It wasn’t until I was finally referred to an orthopedic doctor that I finally got an MRI and that “sprained ankle” turned out to be a nondisplaced intra-articular fracture of the medial cuboid bone with additional avulsion fracture along the lateral aspect of the cuboid bone at the calcaneocuboid ligament attachment and a partial thickness tear of the talofibular ligament and the calcaneal fibular ligament. Due to lack of care, or just shit luck, I then developed the CRPS of the lower left extremity.
That essentially means that, I have an almost constant buzzing pain- or sometimes what presents and feels like lightning strikes zipping up and down my left leg from my tiptoes to about my knee. Sometimes, if I’m having a particularly bad pain day, I’ll wake up to these lightning strikes zipping all the way up my leg and into my back. If I try walking or standing for more than 5-minutes at a time, my bad leg will turn either purple, or gray and swell up like a balloon. My mobility in that leg is laughable- not limited- laughable.
I cannot move my ankle properly. I cannot go up on my tiptoes to reach things. I can hardly even move my toes on most days that end in Y. I hardly move my knee. If you watch me walk, you’ll notice I kind of drag my left leg along, and I don’t move my knee much. Some people at work comment on that, asking why I don’t just ‘use my knee’ because that’s not the thing that’s messed up. I can’t really fault them too much for not knowing, can I? But, then again I’m tempted to remind them that they don’t know my situation and that they can just shut the fuck up.
The first time I heard CRPS get called the suicide disease, I laughed.
I laughed because I am a chronically ill and deeply depressed person, who prides themselves on being too fucking spiteful to roll over and die. If I wasn’t, the depression, intrusive thoughts, and anxiety probably would’ve gotten me years ago. But now…? I understand why CRPS is called the suicide disease.
It isn’t because it sounds ‘metal.’ It’s definitely not because it sounds ‘cool’ because, there’s nothing cool about someone feeling so hopeless they don’t want to live anymore. I understand because, every day I live with it, is another day that I honestly wait to see whether or not my pain tolerance, patience, spitefulness, or willpower or whatever it is that keeps me going, finally runs out. I’m tempted to tell you that this is the reason that my love life is lacking- or that this is the reason why I have virtually no friends.
Because honestly, who wants to take care of someone who is in as much pain as I am? I will honestly sooner kill myself before I make myself my partner’s problem and make them take care of me. I want to be long gone before I make it to that point.
Who wants to talk to someone who is hurting this much?
In the beginning, I found things to laugh and smile about. I was able to put on a happy face and convince myself that this would not last forever but, now I’m not so sure. Because this looks like it’s turning into my forever. A forever that I don’t want, and didn’t ask for…
I choose my daily activities based on spoons now. Because the spoon theory and the faulty battery theories make me feel a little less alone. My daily energy supply is represented by a faulty battery… whereas a healthy person has 100% battery to get through the day, I have to get by on ½ of that if I’m lucky. Waking up leaves me at 45%. Showering- especially with sore joints leaves me at 40%. Each task sucks away more and more of my lifeforce and energy. Breakfast? Have to eat- taking meds on an empty stomach is a bad idea. Housework? Well… I’ve got good and bad days, sometimes it gets done, and sometimes it doesn’t. Sometimes, I have 10% or less that I will use to run errands, eat, change into pajamas, or do anything and everything else. Sure, I can push my limits, maybe squeeze out an extra 20% but it’ll only hurt me tomorrow when I have even less energy than I did today.
But no matter how much battery I start the day off with, or how many spoons I have… I never get everything done. It isn’t laziness. It’s not that I don’t want clean laundry, or a clean house, or a hot homecooked meal. Sometimes I just don’t have it in me to do these things. And it’s getting worse all the time.
Especially now that it’s official, the nerve blocks aren’t working. So, on July 7th my doctor has decided to fit me with a DRG trial for a spinal cord stimulator. Spinal cord stimulation is an option that blocks pain signals from reaching the brain in the first place. According to the research that I’ve done myself, and the packet of information the doctor gave me, for this treatment a surgeon places a small device in your body that sends electrical signals to your spinal cord. Research has found that 40-50% of people who have CRPS (like me) achieve pain relief from spinal cord stimulation.
Am I scared? Fucking terrified.
Who wouldn’t be when it comes to a tiny robot being inserted into your body to stop your brain from being able to detect pain signals? I mean… come on. That sounds like something out of a bad sci-fi movie. Next thing you know, this thing is going to take over my mind, and I’m going to try to rule the world. Okay, jokes aside, you still have to factor in the risks that come with surgery, even if they do call it minimally invasive. It’s still a surgery, and this is still a device implanted into your body that interferes with your spine sending signals to your brain- and that’s nothing to take lightly. And if that isn’t enough to deter you or make you think twice, the downtime is obscene. I’ll be down for 6-8 weeks. Maybe longer when you factor in how badly my body is at healing- I mean, come on. Look at my leg after all.
So, I guess I’m just stressed out… and upset, and feeling extremely alone.
I can’t think of anything else I want to say right now so… I’ll check back in when I can.
-Sky
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