Life with CRPS, and experience of Zentangle

Community, is it important to those living with disabilities? Yes. This is Karen Murray’s experience with Burning Nights CRPS Support ‘Zentangle’ workshops.

Before being diagnosed with Complex Regional Pain Syndrome (CRPS) in January 2022, Karen’s knowledge of injury and disability came from a place of work and friendship. Whereby, she was able to empathise with the elite-athletes she had worked with over the years, as a Sports Therapist with Sport Scotland and her private clinic. Prior to living with CRPS, she was an outgoing and active person. However, Karen explains, “You don't fully understand until it happens to you - then all of a sudden you’re thrown into this world of disability, which can be quite difficult to navigate”.

In July 2021, Karen had what she describes as an “everyday accident”, at work. She rolled her ankle from a step back opening a fridge door, and had to stand on it for the rest of the day which she says “likely caused further damage”. As a result of this accident, Karen endured a high left ankle sprain with sural nerve damage. This eventually led to a diagnosis of CRPS due to relentless pain, amongst other symptoms such as a cold, almost numbing pain, odd sensations i.e. like spiders and water running up and down her leg; in addition to when even a breeze of wind went past her leg she was in agony (also known as allodynia). Karen was provided an orthopaedic air boot, for support, which she wore for 6 months. However, this led to muscle wastage in her left leg. These days, Karen relies on a crutch, and a wheelchair when leaving the house.

Karen also experiences flare-ups, like many other people living with CRPS. During flare-ups, she says her husband, sons, and close friends are supportive, along with their rescue dog Molly. Karen finds comfort in watching sports on TV, particularly tennis, cricket, and football. Other ways Karen copes during a flare-up are through colouring apps on her iPad, reading books on her Kindle, and writing in her pain diary.

Karen always believed she was a very “glass-half-full” person, always trying to be positive but she explains it was very difficult to remain that way, “I kept thinking, "Why has this happened” - there was so much grief in the beginning". CRPS tested Karen to her limits. Every day she feels she is always discovering things about herself now as a disabled person with CRPS that she never would have considered before. CRPS "throws up moments" that you're not always going to be ready for. For instance, Karen conveys "I was watching the Paralympics last night, for the first time as a disabled person, and it was quite emotional for me".

Karen first came across the Burning Nights CRPS Support Facebook page through a Google search. She states, “It wasn't that she didn't have support around her it was just that no one understood the pain, and she wanted to find a bond with a community that understood”. When Karen found the Burning Nights CRPS Support Facebook community, she discovered they were advertising a free 10-week workshop focusing on the art of Zentangle. She had never heard of it before but thought it would be a good distraction technique "It was advertised as a way to take your mind somewhere else, away from the pain".

The Zentangle method is said to be an easy-to-learn and relaxing way to create beautiful images by drawing a combination of simple shapes, known as the ‘Elemental Strokes’, such as dots, lines, curves, S-curves, and orbs. The workshops involved 2 hours of creativity, each week with a certified Zentangle instructor.

Despite Karen being a beginner in this intricate craft, she recognised that her work didn't have to be perfect - although due to the preciseness of the art style, she says “It really makes you concentrate on the fine lines, rather than the pain". Karen expressed that she was proud of doing something for herself, “even though the course is now finished, I continue to create my own Zentangles, and would without a doubt join the Zentangle workshop if it was ever run again”.

Since then Karen has thought about the act of volunteering with Burning Nights CRPS Support as a Befriender. She says she wouldn’t have been able to proceed with this commitment over a year ago, as she wouldn’t have had the confidence or capacity to take on this kind of role but feels she is now in a better place to give back.

Karen’s recommendation: "For a small organization, it has such a big heart - small and mighty!".

Want to find out what Karen loved about Zentangle? Join us at our next set of workshops: https://www.burningnightscrps.org/get-involved/crps-events/article/zentangle-session1/

If you would like to share your time to support those affected by Complex Regional Pain Syndrome (CRPS) and can spare a minimum of 2 hours a week, we would love to hear from you! Please visit the Sign Up page to register your interest and let us know which opportunity you think would suit you best. During your time with us, you will have a contact who will be there for you if you have any issues or problems.

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