I have been keeping something from you, something important to me, that's been happening for awhile now. It's changed my life and has affected my upload schedule among other things.
So...
Last year in October I suffered a fall off a skateboard. Scans and assessments proved inconclusive. 6 weeks later, mid-November, I was diagnosed with Complex Regional Pain Syndrome. This condition isn't common and it was a lonely feeling that no one understood.
You might be thinking; what is this? I've never heard of it before. Let me tell you, you're not the only one. CRPS explained simply is a rare pain disorder where nerves around the area of trauma are in 'chaos'. The brain sends lots of pain signals in attempts to heal the area and alert that something is wrong. But there isn't, nothing is structurally wrong in the body. That doesn't mean that the pain isn't real, it's very real, just inappropriate.
Thank you so much for reading. If you are going through a difficult time right now, I want you to know that you're not alone. If anyone has any questions or would like to share your story, then don't hesitate to email: perfectly.unkept1@gmail.com
Last year in October I suffered a fall off a skateboard. Scans and assessments proved inconclusive. 6 weeks later, mid-November, I was diagnosed with Complex Regional Pain Syndrome. This condition isn't common and it was a lonely feeling that no one understood.
You might be thinking; what is this? I've never heard of it before. Let me tell you, you're not the only one. CRPS explained simply is a rare pain disorder where nerves around the area of trauma are in 'chaos'. The brain sends lots of pain signals in attempts to heal the area and alert that something is wrong. But there isn't, nothing is structurally wrong in the body. That doesn't mean that the pain isn't real, it's very real, just inappropriate.
Symptoms include:
- Severe pain - constant burning, sharp or throbbing pain
- Skin changes - mottling, discolouration (purple, red, etc)
- Temperature change - coldness or excessive sweating
- Sensitivity to touch
- Change in hair or nail growth
- Swelling
- Muscle waste and spasms
- Weakness or complete loss of function in affected area
All of these symptoms I have experienced. The nervous system is so complex and much of the condition isn't understood. It is unknown why CRPS develops in some but not others - someone could have suffered the same fall as me but walk away uninjured. I know it's a difficult concept to wrap your head around so if you would like to find out more I'll leave some links at the bottom of this post.
It has been a tough journey to endure - pain has spread from my hip to my entire right leg, lower back and even up to my right shoulder blade. I experience costant pain and even light touch can feel painful; like a burn or fire. I was mobilising on crutches for a few months but recently my state has deteriorated immensely. A wheelchair is my current mode of transport. CRPS encompasses a massive spectrum and everyone reacts to the disorder in differently. This means that there is no telling when someone will heal, symptom free. I hope for it to only be a few months before I can walk again.
Psychology is another large factor of this condition but I'll talk about that another time.
The 5 month anniversary is nearing - not really a call for a celebration - but coming closer to this milestone has shown me that this will take a while to resolve. This is why I wanted to tell you. It has changed my life in so many ways, some of my independence has been stolen, I am limited by fatigue, pain is constant but I've also learnt how to problem solve, about vulnerability, prioritising, acceptance. The frustration of the inablity to do simple tasks, like going to the toilet or picking things up. I'm still in the midst of my ride and it's going to be a long road but I want to finish on a more positive note.
Last week, I was admitted as an in-patient to a rehabilitation centre. You may not think this isn't positive, but intensive therapy every weekday will mean I can hopefully recover quicker. I've met so many amazing people and have been offered the help I require. I've had to majorly adjust my life but coming here has shaped my perspective on the world. This bout of adversity has taught me so much about myself and life around me.
I've wanted to put this on here for a while now but I haven't found the courage or writing skills to do so. I have so many thoughts and I just can't hold it in. In the future, I will be starting a series called CRPS Talk, channeling my opinions from this experience into words. I do just quickly want to say, I am still the same writer I was before this. A medical condition doesn't define define or confine me and it doesn't change who I am.
Thank you so much for reading. If you are going through a difficult time right now, I want you to know that you're not alone. If anyone has any questions or would like to share your story, then don't hesitate to email: perfectly.unkept1@gmail.com
Perfectly Unkempt
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