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!

The problem with life is that it is often no fairytale

From a young age, we love stories. And when life seems especially incomprehensible and unfair, we often look for the classic storylines to help us to make sense of it. Injury and illness is a classic example.

Friends and family want to hear that you have been the hero who has taken on the injury or disease, won over it and come back stronger and wiser from your trials.

Or that the medical professionals have the magic potion or magic hands that heal you, against the toughest odds.

And as the person who is injured or ill, we also want those comforting storylines to be true as well.

But the reality is so much tougher

The reality of recovery and rehabilitation is that lacks the instantaneous nature of stories, and brutishly ignores the linear nature of a classical storyline, with better days & worse days, progress & slip-backs and hope & despair. Part of the agony as the person with the injury or illness, is that time expands – filling 24 hours when you cannot sleep and cannot do anything or concentrate on anything can feel like forever. And when others want to hear the fairy-tale storyline as much as you, the loneliness of the reality of your situation can be overwhelming.

We all need a friend who is prepared to listen to the reality

In today’s fast-moving world, we all want injury and illness to be something that we bounce through within a week or two. But serious injury and illness is not like this. And as the person going through it, you do need to find someone who can let you talk about and let out some of the pain and frustration, as otherwise it eats you up from inside.

It’s not easy. It takes a lot of searching. And many people have told me that it was a surprise to them as to who stepped into the gap and supported them in this way. A truly vital friend, at a time of need.

But if you cannot find this person, then you need to find another outlet for your anger, grief and sense of loss. Some keep a journal and pour out their heart into the pages, or an audio diary. Some charities and support groups have people who will step into this role.

And hang in there

Whilst it may seem unbelievably tough right now, who knows what lies ahead? Just look after yourself through this hour and this day. The future will unfold. And who knows? Maybe in the end, you will be able to overlay one of the fairytale narratives onto your experiences – but for sure you will be glossing over the depth and darkness of some of the hardest times. Only you (and maybe that vital friend) will really know the reality.

HELP YOURSELF! TOP TEN TIPS

When you are injured, the level of incapacity can be overwhelming. Here are my top ten tips of things that you can do to help yourself:

  1. Go online – get your groceries & goods delivered and your banking & services online. Whilst you may not have had the time previously to set this up, it is so easy, and when you are injured, you are home all of the time for things to be delivered!
  2. Find nutritious prepared meals. When every movement is an agony and being on your feet is hard – find the meals that just need putting in the oven and taking out.
  3. If you are really struggling, ask someone for help. A lot of your friends will want to help, but be unsure what they can do. So call them up and ask if one or a group of them can help with cooking a few meals and freezing them, or coming in and stacking the dishwasher every couple of days, walking the dog, taking the kids to school, or whatever that task is.
  4. If you cannot bath or shower, can you get to the leisure centre? Most leisure centres have a shower block which does not involve any steps, and a shower with a seat. So if you can borrow a wheelchair, or get in there with your crutches, you can have a much safer shower than in your own bathroom (which probably has a ton of accessibility challenges). PS – if there are wounds that you really need to keep dry, clingfilm around the area does not work, as the water just goes behind it! You will need to get a large enough waterproof dressing. I found that our local independent pharmacy were really expert on wound dressing and management (so worth phoning around to find who can help you once you are out of hospital).
  5. Set up call-barring for nuisance calls. You will have your phone right next to you as you try to get the appointments that you need and talk with the experts on your injury, but nuisance calls are wearing!
  6. Can a family member do the medical appointments for you? One of the most debilitating things is that there are a ton of phone calls, documents and follow-up with the medical profession. When you are out of it on pain medication, this is close to beyond you! If someone can do this for you, it will be a huge help!
  7. Have a pad on hand and write lists and notes. When you are drifting in and out of shallow sleep, and have taken lots of painkillers, you really struggle to keep on top of things. So just write things down – including things that are worrying you, how you are going to talk with the Doctor tomorrow, things that need to get done etc.
  8. Get a sticker on the door to stop cold callers. You may be happy to struggle to the door for the thoughtful parcel or flowers from friends, but the cold caller is truly frustrating. You can get the sticker from your local police, Neighbourhood Watch or Trading Standards.
  9. Hairdressers etc will all come to you. Whilst you will have been used to rushing around and doing your chores on the run between other things, there are ways that almost everything can come to you.
  10. If you need more help than your friends and family can give, ask for help. Have a look at this website: https://www.nhs.uk/conditions/social-care-and-support-guide/ and talk with your GP and also Citizens Advice can help you.

I really hope that these make you feel less alone in facing the challenges associated with your injury. You will come through this and there are people and mechanisms there to help, if you can track them down.