Originally posted 1 November 2021
Welcome to my 3rd annual post about Complex Regional Pain Syndrome, a disease I’ve been struggling with for 4 years.
#NERVEmber is International Nerve Pain Awareness Month, and today in particular (first Monday in November) is CRPS awareness day.
I developed CRPS in my left foot after a soft tissue injury caused by running. I experience 3 distinct types of pain, an aching pain that is more prevalent during the day, sharp electrical shock type pains that are totally random, normally a few seconds in duration and take my breath away, and burning pain, which sets in at night. Over time, CRPS has spread to my right foot, then to both my hands. It’s not as bad there though.
One of the horrible things about CRPS for me is that it occupies so much of my waking thoughts. It’s always there, I never forget about it. I don’t know how to describe it, but there’s nothing else in my life that I think about as often as I do about CRPS. It’s not because I want to think about it, but because I keep being reminded of it.
I belong to several CRPS FB groups and forums, and there’s a certain type of message that gets posted all the time, along the lines of “Just because I’m smiling doesn’t mean I’m not in pain” or “Just because I’m doing [insert whatever] doesn’t mean I’m ok”, etc. I don’t like to post those, or even really internalize those thoughts because I don’t want to give myself excuses, or let myself off the hook of life. But sometimes that’s what I want to say to people, because the effort of just living normally while battling this condition is exhausting, and I want some sympathy dammit! Ok, just kidding, but I guess I’m hoping that if one day, the façade cracks, those close to me will understand and won’t hold it against me.
Towards the end of last year, around my last Nervember post, I decided that this would be the year that I took my life back. I’ve given up so many things over the years, notably musical theatre and fitness activities. I’ve made some really positive steps this year, and hope to continue. I signed up for a musical and actually got through the whole thing, with a bigger part than I’ve had in years, even before CRPS. I also went back to gym with the help of a personal trainer who understands pain. I would love to do another musical, and will continue with gym when lockdown finishes.
With these positive changes in place, I need to find a focus for the next year. One goal is to find a treatment that will get me through winter. My pain (and most other CRPS sufferers’ pain) is much worse in winter. By the end of winter, I have thought about suicide more than once. Next year I want to focus on finding something that will help ease those months, even if it’s considering stronger medication for just a short period of time. The other goal is to evaluate where I am in my career and decide what is next for me.
I post my personal story once a year to raise awareness of invisible conditions, and to hopefully reach those who are suffering in silence in the hopes they will reach out in turn. If you want to help raise awareness, have a look at https://internationalpain.org/nervember/ or https://www.colortheworldorange.com/engagementcrps to see how you can help.
You can also donate to https://internationalpain.org/donate/ or a local group that provides peer support – https://www.kiwicrps.co.nz/