Recognising other bloggers who have cast helpful light and perspective on my own challenges

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:

HealthUnlocked (www.healthunlocked.com)

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!

Learning to dance in the rain

One of my best friends, Liz, has a quote on her wall saying “Do not wait for the storm to pass, instead learn to dance in the rain”

It’s a concept that I love – and my husband and I have talked about it over and over across the last months. But I have been struggling with it too; constantly asking myself whether this level of acceptance is giving up on the goal of getting better. Like so many aspects of recovery, I have had lengthy internal debates about it and not reached any clear conclusion. Then this week I came across this very impactful TED talk from the amazing New York Times writer Suleika Jaouad; it has given me another perspective and perhaps helped me to slay a dragon and move forward some more.

It is a talk that applies to everyone – not just those struggling with injury or illness. Do watch it for yourself here (just 17 minutes of beautiful and impactful viewing): https://www.ted.com/talks/suleika_jaouad_what_almost_dying_taught_me_about_living

Living well ‘in the middle’

She challenges us to think again. Her premise that the separation between being sick and being well is not the simple, binary divide that we often paint it as. But that the border is porous. And that with the increased life expectancy of today, most of us will spend much of our lives travelling back and forth between the situations of being sick and being well, and living at least some of the time in the middle.

She finishes with the powerful thought that every single one of us will have our life interrupted… by something that brings us to the floor. We need to find ways to live in that in-between place managing whatever body and mind we currently have.

Powerful thoughts for ‘in-betweeners’

There were a number of themes that struck me as very powerful. But a few stuck out:

  1. The power of connection and shared experiences – her example of the prisoners in solitary confinement calling out their moves for the board games that they had made out of torn pieces of paper. It made me realise that the shame and inadequacy that we feel about not getting better and not keeping up is a dark shadow that we can (and need to) chase out with the bright light of friendships and fun.
  2. The importance of dreaming big on plans for the future – her example was the girl in Florida who plans someday to go camping in spite of her fear of bugs. When the whole world seems to be turned on its head, all dreams evaporate in the face of survival. But holding on to some things and keeping dreaming about them, and knowing that one day you will do them is a shining ever-present beacon of hope.
  3. The importance of taking the risk of opening up to new things – her example was the retired art history Professor in Ohio living through a lifetime of constant pain and disability, who in spite of all of the uncertainty of his health got married, had Grandchildren, taught, and danced with his wife every week. In spite of a situation that could have gripped him with constant fear and worry, he found meaning and built a beautiful life encapsulated in love.

Thank you Suleika for sharing your wisdom. And here is to learning to dance in the rain, through the different stages of the storm – in the eye of the storm, in the pouring rain and on the days where the thunder & lightening start to recede.

I hope that you find this as inspirational as I have – even if it took a few months for me to go the journey!