It has been quite some months since I last wrote a blog. The back end of last year was a hard road of trying to get the pain medications to the balance that made the basics of getting through the day possible, and working out how to shrink life to the things that I could get through. Then facing up to the surgeon’s persuasion that a tenth surgical procedure was the best way forward.
Through this time I struggled to find a way to share my experience in a way that I felt could help others.
Plus, I have to say that I found various bloggers and communities who are sharing their experiences and I felt were sharing a lot of the things that I had been searching for over the last two years.
So I wanted to blog to share links to some of them – in the hope that this is helpful for people reading it.
Joletta Belton – My Cuppa Jo (www.mycuppajo.com)
Jo shares her experience of over a decade of pain stopping her ability to work as a firefighter and to run and pursue the sport and life that she loved. She has gone on to do a huge amount of study about posture, musculoskeletal issues and pain, now sharing this with others in her beautiful and inspiring blog posts and also as a patient advocate at international conferences.
Tina – Living Well Pain (www.livingwellpain.net)
Just as Jo has pioneered the path in Canada, Tina has done the same in the UK. Tina’s accident was over two decades ago and she shares her experience of how to live well with persistent neuropathic and musculoskeletal pain with lots of practical tools and advice from her own experience. These come in the form of blog posts on specific topics and most recently as a patient advocate, she has written a guide for patients called ‘Making the most of Physiotherapy’.
Pete Moore – the Pain Toolkit (www.paintoolkit.org)
Pete attended a pain management programme in 1996 and since then has dedicated himself to sharing the best information and knowledge with both patients and clinicians across the globe dealing with persistent pain, especially back pain. He has a great website and has written a number of excellent guides on pain. Most recently he has set up a monthly Pain Toolkit Online Café on Zoom, where anyone is welcome to digitally ‘pop-in’ and chat or listen to others working with similar issues to their own.
Barbara Babcock – Return to Wellness (www.returntowellness.co.uk)
Barbara’s experience of her own neurological illness and also caring for her husband meant that she saw up-close-and-personally the life-changing impact that a serious health issue can have. This led her to use her coaching experience to restore emotional wellbeing and look positively towards the future. Her blogs and self-help tools help across: managing the health issue, reclaiming emotional health, reclaiming relationships, returning to work, reclaiming meaning & purpose in life, reclaiming hobbies & interests and support for carers and supporters.
Jo Moss – A Journey through the Fog (www.ajourneythroughthefog.co.uk)
Jo is bed-bound as a consequence of the health issues that she suffers from. She writes her blog to give other people in the same position a bit of hope. She says “My life isn’t easy, but it is worth living. I may cry a lot, but I also laugh a lot. I may get depressed, but I’m also optimistic. No matter how bad things seem right now, they will get better. You can take back control and give yourself hope for your future”. Her blog is frequent, searingly honest and brutally insightful on topics that others may shy away from.
Sheryl Chan – A Chronic Voice (www.achronicvoice.com)
Sheryl lives and blogs from Singapore, living with multiple lifelong illnesses. Her blog sets out to help other sufferers with a toolbox, but more widely to raise awareness of long-term illnesses from a number of perspectives and encourage empathy amongst all facets of society, and not just healthcare. Her blogs are frequently very practical, covering both the physical and the emotional challenges with equal frequency.
The Princess in the Tower (www.princessinthetower.org)
This site has a number of useful resources for learning about chronic pain and how to manage it and reduce it. The blogs focus a lot on the emotional impact, and ways to manage this.
Then, I also discovered some really useful communities:
This is like a medical version of Facebook and there are different groups that you can sign up to. One of the groups is Pain Concern (a charity that also have a helpline that you can call and lots of other support tools that you can access at www.painconcern.org.uk)
Anyone can post a thread and expect to get genuine responses from others. The tone is universally helpful (in my experience) and can get some good insights. Obviously, this is not professional healthcare advice, so it needs to be seen in that context.
The Injured Athletes Club on Facebook
This community was set up by Carrie Jackson Cheadle and Cindy Kuzma to go with their book ‘Rebound: Train your mind to come back stronger from sports injuries’. They moderate and facilitate the group to get to a mix of being able to vent about challenging times, ask for advice/perspective and celebrate progress, with ‘Winning Wednesdays’, Monday Motivation and Friday Feeling themes running most weeks.
I hope that you find some of these inspiring and helpful, just as I did. If you have others that you think are excellent, then do share!