During pain flares I remind myself that this will not last and there will be low pain or no pain days again in the future. I read the same reminder written by another CRPS person when during a bad night a few months ago I was searching for comfort online. It helps to hear it from someone else.
Three years ago I managed to walk a few steps without crutches, this happened during one of my Ketamine infusions and was a miracle, I have videos of me walking without crutches in hospital and then from one end of the kitchen to the other. I was able to continue this walking for many months and even wrote a blog post about it, however it all came to an abrupt end with the onset of the worst pain flare I have ever had, I wrote a blog about that too! It seems impossible now because I can’t do these walks anymore without setting off massive pain. I have periods of low pain when I can manage a couple steps and then everything changes and suddenly I am rock bottom with a foot full of allodynia and shooting pains at the slightest weight bearing attempt. During these down times I know I have to be patient and work with the pain not against it, I have to keep trying to do a little more each day to get back to at least two feet and two crutches again. During a pain flare I dread going to bed because the shooting pains always get me just as I am about to go to sleep, BOOM a 10/10 shooting pain, and another, then nothing until maybe 5.30 am when one wakes me up with a vengeance.
It is hard to accept all the uncertainty that comes with CRPS and I am now missing not just my old self before CRPS but the self that managed to walk a little 3 years ago; I wanted more, I wanted to be walking a little without crutches every day, forever! I set my expectations too high and have been berating myself ever since at my ‘failures’. That has been a big mistake because it is not something I can control or need to feel guilty about. At the time I was so excited and even now people keep asking “are you still walking”. It’s hard to explain the overall unpredictability of CRPS when I don’t really have the answers.
Every so often CRPS and other medical experiences become the main subject of my art and I am fortunate to be able to express my feelings (and confusion) in some of my artworks. These are usually very personal works full of symbolism; lines twisting through the paintings are my SCS (spinal cord stimulator) wires, these become pathways leading to dead ends as I search for a way out and there is often writing within the picture. Medical Overload was painted last year following the diagnosis of a melanoma and wide excision plastic surgery on my cheek, as well as numerous other medical procedures and appointments requiring trips to larger cities and hospitals. And of course there are always the other dramas that thread through out day to day lives and impact our strength.
What a dismal blog this is sounding! I have made several false starts to write a new blog post this year but the drafts just sat on my desk waiting inspiration and energy that I couldn’t find, then a CRPS friend commented to me that I had not posted a blog for a while and this reminded me that there are still a few people who actually still read my blog. So here it is, I can’t endlessly be an inspiring person, sometimes a blog just needs to tell it as it is.