A few weeks after my diagnosis, what I remember really wanting (other than for the disease to just disappear, all by itself!!!) was to find other people living with the same problems; to feel less alone in the daily struggle with pain and physical limitations.
And dealing with fear. I don’t like to admit it, but I was scared. Not only of what this disease was doing to my body, but also of the treatment plan that my neuro-anaesthesiologist and I had agreed to. And the question in the back of my mind: “What it keeps spreading?”
I’d started a new job, on contract, as soon as the cast had come off my arm from a Colles’ fracture; a simple broken arm. Although that snapped bone had healed properly, it had triggered CRPS. Complex Regional Pain Syndrome.
So there I was, after finally having landed my dream job, needing to take time off for medical procedures – just a month after I’d joined the company. I’d interviewed for that job with the cast still on my arm, and was convinced that the pain I was experiencing would go away as soon as the bone had healed. I could not have been more wrong!
The day I first met my neuro-anaesthesiologist (three words I’d never have guessed would someday apply to me!), I was expecting a 15-minute consultation. A confirmation of my diagnosis, then a follow-up appointment for any actual treatment.
Instead, I was in the day surgery operating room (OR) an hour later – a completely unplanned medical procedure. When I called my team to let them know that I’d have to be off work for the rest of the day, I was extremely lucky that my director’s attitude was: “Your health comes first. Take the time you need to take for these treatments.”
There were many more medical procedures after that, though, so I was worried that all these unplanned hospital treatments would interfere with the new process/project that I’d been hired to launch. Or that the disease itself would do that.
I was scared, worried, and feeling all alone in the world with this rare disease. It didn’t help that I’d often be jolted awake by pain flares, in the middle of the night, or simply be unable to get to sleep at all. Those hours between 0100 and 0400 were always the worst!
I’d be in too much pain to read, which is usually what I’d do if I couldn’t sleep for some reason. So I’d log on to Twitter and lurk; it’s a truly global platform, so there was always something going on. Lurking on Twitter is what you’re doing when you read posts from live tweet chats – without joining in, without participating.
It’s not nefarious like stalking; sometimes it’s a way to evaluate whether a given chat or hashtag community is one that you’d want to join, or to be associated with.
And I found people with the same rare disease that I (now) had. Right there, in public, on Twitter. I have a background in bioethics, as well as privacy protection, and had been taught to protect personal health information.
Yet the folks using the #CRPS hashtag were openly sharing information about their medical conditions; tweeting about their symptoms, treatments, and disease issues, and engaging with others.
It would take a while before I’d be comfortable sharing my own medical information, and at the time I wasn’t sure whether I’d ever be able to bring myself to come out with this disease in public.
A few months ago, I found somewhere to go during the dark hours of the night, when I was in pain; feeling scared, and not wanting to wake anyone up. It was a comfort to lurk, and to read posts written by others who were enduring the same disease.
Individuals who suffer deal with the same challenges, the same overwhelming neuropathic pain. So I began sharing my blog posts with a few other people with CRPS, in a password-protected format. They’ve convinced me that my writing might help others with this horrid disease.
So in honour of CRPS Awareness Day, which was on November 7th, I’ve decided to make all of these posts public. If the CRPS portion of this blog helps even one other person, then it will have been worth it for me to share information about my health.
Feel free to leave a comment, or to drop me a line via direct message over on Twitter 😉
