Living with a chronic pain condition like Complex Regional Pain Syndrome is challenging. I want to remain someone who has a balanced life but by the time work is over, I can feel exhausted. Doing anything in addition can feel more like a burden than a joy. Finding ways to keep the balance and enjoy my off time is an ongoing exercise but the follow are a few things I find rejuvenating and make life with CRPS better!
Prayer, worship and bible study… as a Christian, I find it encouraging to frame my pain through the lens of faith. There is always a verse, song or prayer for how I’m feeling and it guides my reactions. Finding Proverbs 31 Ministries was a gift. An online community focused on eradicating biblical poverty and giving real hope for real life is just what I need! Through their online bible studies, I’ve met so many wonderful, courageous women with whom I can do life. I have deepened my understand of the Word and I’ve had so many laughs and such fun on the journey. I really recommend finding authors (for me it’s Lysa Terkeurst, Max Lucado and the like) who inspire and guide you and a community with which to share. When I can’t hold a book or keep my eyes open, I find Summer Gross’ lectio divina wonderful relief as well as worship music from Kari Jobe and Ellie Holcomb. Guided meditation through the Word is great too!
Love…spending time with my mum, my friends and my fur-babies brings connection, comfort and gratitude. It makes enduring the pain worthwhile, helps distract from the pain and generally brings giggles and relief! My German Shepherd dog, Teddy, is always goofing about and ready with a hug! My American Quarter horse, Texie, makes me feel able and worthy, he is so majestic but so willing to listen to me. Whether I’m sat upon the floor beneath his legs relaxing or out riding, he gifts me with a sense of security and joy! Mum and friends often listen and check in on me, but more than that, they love me for the person I am and not as someone who is ill. It’s a fine line between being compassionate and making the chronically ill feel like a burden. I am so blessed to have people who achieve compassion and I encourage you to find your tribe of people who get you!
Exercise… Working through the programme created with my biokineticist and friend, Bryce, keeps my limbs mobile and prevents deterioration. The exercise also release endorphins which helps with pain relief. He has given me a mix of challenging exercises for good days and pain relief ones for bad days. The pain relief exercises have drastically reduced my use of migraine pain killers and anti-inflammatories. I’ve found consistency is key, a little bit regularly keeps me feeling better.
Distraction… I love to be absorbed into a different world far from the pain and decisions and these three all help with that!
- Books… I read and listen to them. I find using a Kindle is the best way to consume books because paper books hurt my hands. When I’m having eye trouble or have a migraine, audible.com has great books to distract from the pain. Favourites include:
• J K Rowling’s Harry Potter series
• Brene Brown’s The Gifts of Imperfections
• Gail Carriger’s The Parasol Protectorate series
• Jane Austen’s six novels – particularly Pride & Prejudice
• Daisy Dalrymple series by Carola Dunn
• Emily Bronte’s Wuthering Heights and Charlotte Bronte’s Jane Eyre
• The Peabody series by Elizabeth Peters
• The Reluctant Detective series by Martha Oakley
• Christopher Paolini’s Inheritance Cycle
- Movies and tv series… I love watching mini series and movies I love, over and over again particularly interpretations of the classics by BBC, action movies and period dramas like Downton Abbey and Miss Fisher’s Murder Mysteries.
- Music… A broad range of music keeps my brain at peace, from rock ‘n roll to classics. Favourites include Ellie Holcomb, Queen, Chopin and Taylor Swift
Really strong, good coffee… not much more to say than that! But really, I live on Nespresso, it energises and soothes and there is all sorts of research to support the goodness of good coffee! We have a local artisan bakery and cafe, The Upper Millstone, about 1km from home and it is a great retreat on a tough day!
Apps… My iPad has revolutionized my life, it’s awesome and the one device I can use with ease. I use it for work, relaxation and community! The apps I have added to usual ones include:
- A pain monitoring app: find one that works for you! Mine helps me keep track of medication taken, how I’m feeling and what I’ve done
- UP from JawBone helps me keep an eye on what I am eating, how much I’m exercising and of I have a healthy calorie count
- Recognise helps retrain the brain and helps identify left from right which is really important for CRPS
Nature… beyond loving my fur-children, spending time sitting on the grass watching the grass grow held NO appeal prior to my CRPS diagnosis. As I’ve come to better understand my body’s rhythm, I’ve found little that restores the calm as spending time in nature does. I’ve crossed over so far as to actually garden a little now. My home over just over a year came with a magnificent garden, if unkempt, that has yielded so many new flowers, trees and bugs to make several turns in it a day a joy. Breathe the fresh air and just be, it’s wonderfully tranquil.