There is more to CRPS then what is most commonly spoken about. Many people are reluctant to talk about it in fear of being labelled as a crazy person. I’m referring to dissociation, sometimes referred to as Body Perception Disturbance (BPD).
When this started happening to me I didn’t even notice. At first it started with me saying ‘it’ or ‘that’ instead of ‘my foot’ or ‘my leg’. My pain team would correct me and when I started to notice, I would attempt to correct myself. But there is a difference in saying it and believing it.
I sometimes say I have two sides to my brain. The common sense side and the side that’s completely devoid of any such thing. My common sense side knows that my leg is my leg. I know it’s attached to me. I know that. But the other side has given up. It is not mine nor do I want it. Sometimes I hate my leg. I hate it for what it’s doing to me. This is all part of the BPD.
When the pain gets too much, and I completely lose control of myself, I want it gone. I have even asked my husband, when my bones are being crushed, when the fire is fierce, to ‘chop it off’. I don’t think that he was prepared for this in the beginning. I really don’t blame him. It would be a shock having your significant other suddenly blurt out they don’t want part of their body anymore. It took a while for me to even mention these feelings to my pain specialist. My rationale is how could anyone want something that hurts this much to be part of their body? It no longer even looks like it’s mine! The skin, the hair, the swelling and contracture make it not look like it belongs.
I would NOT be better off without it. And that’s what I have to tell myself over and over. When my pain flares and I start to hate the flesh and bone that hangs from my hip, it is on a repeating loop in my head.
With the disassociation comes proprioception issues. For me, if I am not looking at my leg, I have no idea where in space it is. I sometimes think it is in one place, but in reality it is somewhere completely different. This is what causes me to fall a lot. If I lose track of my leg , or if I am not quick enough to look down and find it, I fall. Its frustrating to say the least. It’s so hard to explain this to people. They look at you with bewilderment. ‘How can you not know where your own leg is?’ I start to think that this whole thing is illogical. That, if I try and forget about it, it’s not happening. I soldier on and push. I push and push but it doesn’t make a difference. I still don’t know where that leg of mine is.
The more I try to find it the more my brain ‘freaks out’. There is a constant battle between the common sense and the ‘other’ side. Its a battle of good verses evil. They attack, they fight and they attack again. It’s messy. It’s bloody. It’s vicious. Most of the time the ‘other’ side is victorious. I am working with the ‘common sense’ side to strengthen the army.
I have gone through a lot of brain retraining. I have to correct myself and own it as part of me. it is MY leg. not ‘it’ or ‘that leg’. It’s so much harder to do then it sounds. I have actually had to go back through and read what I have written and deliberately change ‘it’ to ‘my’.
As part of the brain retraining I’ve also tried mirror therapy and graded motor imagery. I use an app called recognize that was developed by Noigroup (Neuro Orthapedic Institute). Lorimer Mosley and David Buttler from Noigroup actually wrote a book called Explain Pain (if you haven’t read it yet, I highly recommend you do).
Having a piece of you that you believe isn’t yours doesn’t make sense. It drives you insane, and to the point of dispair. But we need to talk about it. It shouldn’t be that shameful little secret you keep to yourself. Speak to your doctor and start the road of ‘recognition’
and ‘ownership’. I’ll keep going. I’ll get MY leg back!
Noigroup Website http://www.noigroup.com
#CRPS #complexregionalpainsyndrome #mentalhealth #breakthestigma #depression #anxiety