There’s Cornish Pixies Living in my Nervous System

Sitting and talking to someone, trying to relax or having treatment can become frustrating and embarrassing for someone with CRPS.

Sometimes it’s a subtle twitch that no one notices but me. Other times my leg can all of a sudden flick/jerk out. The one that I really ‘gets on my nerves’ though is a shockwave. It starts in my leg and quickly spreads up my right side, tensing my muscles and causing pain as it goes. My head will then quickly but violently snap from side to side. Sometimes once. Sometimes multiple times. The more I try and control it, the more it hurts. I cannot stop it. I just have to go with it until it stops.

It’s like the little blue Cornish Pixies from the Harry Potter stories have taken over my nervous system and are playing games with it. Flicking nerves here and there, unleashing havoc, laughing hysterically. Except, I’m not laughing. I’m not having fun.
To be honest, we are not sure what causes it. Whether it’s a side effect of my cocktail of medications, or just another part of CRPS. It stumps my doctors. It scared the living daylights out of my physios. I’m laying on the table having my tightened muscles released, when all of a sudden my whole right side is going crazy and my head is snapping from side to side. We thought it might be my nervous system being overloaded. But it can also happen when I am sitting quietly or laying down.

It does not do much for my anxiety either. I worry about people seeing it happen. I wonder what they must think of me. I can feel the eyes burning through my skin. I spill things. I drop things. If I’m in my power chair, all of a sudden I get a wobble going. Do people think I’m drunk? On drugs? Do they think I’m completely crazy? Then I start to worry, what if it happens when I’m carrying one of the many cakes I make? Or worse what if it happens when I’m holding my nieces, nephews or friends children? That little monster inside my head appears and makes everything a whole lot worse then it needs to be.

Trying to explain why the nervous system does what it does when you aren’t a doctor or specialist is impossible. It’s much easier to make a reference to Harry Potter. Plus it’s more fun that way. I try to make the best out of every situation and try and turn a negative into a positive. The visualisation of the pixies playing in a nervous system, you can’t help but laugh. Having a body in a constant state of fight or flight is difficult. It’s not surprising though that odd things happen. Perhaps I should just blame the Nargles.
#CRPS #complexregionalpainsyndrome #depression #anxiety #nerves #CRPSreallygetsonmynerves #harrypotterfan

4 thoughts on “There’s Cornish Pixies Living in my Nervous System

  1. I’m with you on the little mischievous pixies. You have a good sense of humor, and creativity. I have full body CRPS, and know your pain– and I’m very sorry that you live with this disease.
    I loved your post! Thank you for spreading awareness 🙂🎗

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  2. I enjoyed your post…..I too suffer from CRPS…..a beast of a disease. As I age, I’m 62 now, and have had it for over 10 years, it seems to be getting worse not better, and I pray for remission daily now that I know that can happen. Your intelligence and bright spirit made my early morning a bit more bearable……your imagination is wonderful and must be a gift from God. Bless you my dear for posting that blog…..it’s great. My mother read it also, and she is finally starting to understand CRPS…..only starting mind you.

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    1. Thank you for your kind words. I’m so glad that it was helpful. One of the first posts I ever did was what it’s like to dance with a monster, which is a bit more descriptive… maybe that would help too?
      Keep fighting. Keep moving. Keep getting up when you fall x

      Like

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