The ‘Anniversary’

Arriving for a week at Epworth Geelong with my husband and carer John

I had my three monthly Ketamine infusion last week and after settling into my room I was rather surprised to find myself sitting on the bed crying- what the heck I thought, where did this come from? So I searched for the reasons. I was in a safe place where the Ketamine would lower my pain levels and there would be no outside pressures or demands, so some of the tears were about relief. I was also sleep deprived and had only slept for three hours the previous night and knew I would be woken up for observation checks every two to four hours that night, so part of my crying was about running out of stamina. When one of my favourite nurses arranged for me to not be woken for 6 hours, I burst out crying again- tears of relief. My pain management doctor says crying is all part of having CRPS, but so often I thought?
 
Last December saw me reach the ten year mark since the first operation and the subsequent onset of CRPS, although at the time I was blissfully unaware of my future and thought I was going to get better. Ten years sounds like such a long time and I have some new emotions occurring as a result of this ‘anniversary. I am feeling a bit depressed (comes with the CRPS like crying!), I feel tired (meaning I am tired of the pain), and I want a break from it all.
 
 It is hard work getting through each day and night, never knowing when a pain flare will happen, and trying to find a balance between doing too much or too little. My social life is extremely restricted and I was seriously considering pausing Facebook because I find it hard seeing photos of all the wonderful things others are doing that I can’t do, yet it also keeps me in touch with some of my special CRPS friends and nurses as well as any births, deaths, weddings (seems that social media posts are often the only way we find out someone had died!), so I won’t give up Facebook, maybe I will just do a bit less of it, unfollow a few people and work on the acceptance thing a bit harder. 
 
So ten years on life with CRPS continues and despite the horrific pain flares I am still alive, CRPS doesn’t kill (however it can lead to suicide - DON’T !) although it feels like I am dying at times, the toll it takes on your body and mind can’t be good. Despite the pain and all the negatives relating to it I am still glad to be alive and I live for the periods of low pain and the many hours spent in my studio overlooking our courtyard garden.
 
I continue to appreciate and be enriched by the simplest things in life such as the wonderful delivery people who walk around to the back of the house to deliver parcels straight to my studio door, the internet shopping that makes the parcels possible, the warm summer mornings before the heat sets in when I can go into the garden and breathe the fresh air and smell the lavender, and last week there were the stunning sunrises that I could watch from my hospital room at Epworth Geelong. Every day is a gift.