Today (my birthday!) I'm sharing with you why CRPS needs attentive and skilled doctors. CRPS is a condition that is deceitful and very hard to predict. I've had my CRPS for 5 years now and I still struggle to tell what kind of day I'll have tomorrow. CRPS has so many triggers and those play a big part in what kind of day I'll get tomorrow and today. I have never been able to say since having CRPS; "yes I'll be there 100% ". I'm forever giving people fore warning of my condition and the unpredictability of my health; this one of the many reasons that makes CRPS very hard to live with.
The kind of triggers range from environment, to people interactions, to physical, to emotional, to mental and health.So if I went to sleep in a low pain, yet wake up to rain and someone comes to our home; or I have to speak with people. 9 times out of 10, I end up in high pain by that night; if not earlier. If someone was to give me very charged emotional news; happy or sad. I'll have that reflect in pain. The more bigger the news the higher my pain price.
So what is a Pain Price?
A pain price is exactly that. I pay a price of pain for any activity, thought or interaction I have with anything and anyone. The more I do in a day the more of a price I pay within a 24 hour window. It normally occurs once I've had a 'reset" sleep.
What is a "Reset" Sleep?
A reset sleep is a nap that I take after giving out energy that has drained me fully. The energy drained, is very noticeable in my face. I get very dark eyes, I call them "raccoon eyes". By the time I realise I'm drained; I'm now not coherent in my words. I can hardly take in information, and because I'm not at my best; this is a very dangerous time for me. Because any extra energy I give out when I'm on empty I now get "double" the pain price. So a "reset" sleep allows me to recharge and become alert and in control again.
My triggers, pain price, reset sleeps and well informed professionals is the main reasons why its important to have a rehabilitation Doctor and physiotherapist who understand these needs and requirements; Because if they were to ask more when I’m drained. Then I can end up in days/weeks of pain flares; which then means no physiotherapy happens. Which leads onto no improvement.
So what is a Pain flare?
A pain flare is much like having a seizure. You have no control of your physical self. My foot and leg fly around twitching, jiggling and I’m wrapped in pain; you will see this in the attached video, the only part of me that is still in my control is my mind. I have learned with great help from mum; on how to breathe, think and do through such pain; I imagine my CRPS as black matter and through my minds eye, I scan where the initial spot of origin has happened. While I'm doing this mum is physically touching and rubbing my leg/foot to help override the en-heightened sensory system that my CRPS has activated.
When my pain flare starts mum and I have found where "Alien" is causing the pain, Mum physically squishes him while I decrease the black matter in my mind. I use my left arm and in my mind I'm working my left leg; mirroring what mum is physically doing to my leg. Together we work hours on my flare. Most of the time we are hardly speaking to each other.
(we call him the "Alien" as we've seen and felt my skin move by itself without my involvement much like the aliens in the movie’s do). Weird and extreme I know however not impossible.
Once its over my body is physically released and I have control again and I pass out. Once I've had my reset nap I wake up to start again.
Now why is this important to mention this?. Because any pain I feel on that day, limits my abilities to give more in the next day. Add in unknown factors and each day becomes a juggling act.
I've attached a video that mum recorded of me in a major pain flare; that started 1 hour after surgery on my spine.
I have a device placed in to my L4 to stop my disc fluid from leaking.
This flare scared mum and I so much! Because it was so violent and we thought for sure I'd have to have this fixed again.
However because I had a great surgeon I didn't have an issue and after a 4 hour flare; I thankfully made it out without harm to my surgical wound and device.
Until next blog Many blessings to you all