Life as a Fibro Warrior, According to Sonja, Martine & Bianca
In our last article, we highlighted some famous people living with fibromyalgia but we all know that often celebrity life is not that easy to relate to - there’s no paparazzi following us in our daily lives or unlimited resources to support any health fads.
It's time to get real, with real life and real people. In this article, we turn our eye to some of our inspiring MoreGoodDays® alumni and dig into what it is like to live with fibromyalgia. Our strong fibro warriors share their tips and tricks, inspiring our Fibromyalgia Awareness Day recognition.
Meet Fibro "Queen of Hearts" Sonja
This is me dressed as the Queen of Hearts doing a Cluedupp game. Cluedupp games are interactive games where you make a team and then walk around your city and the GPS on your phone triggers little puzzles or riddles to solve. They are a lot of fun, but also a LOT of walking! They are all themed - this one was an Alice in Wonderland theme. It's a really good indication of how far I've come in managing my condition, I wouldn't have attempted something like that a few years ago. I'm looking forward to the Smurf-themed one at the end of this month.
Age: 42 - answer to the ultimate question of life the universe and everything!
Background:
A migrant child (born in Denmark), I have been in Australia for 40.5 years. I spent a few years in Melbourne, then country Victoria, then moved to Queensland where I attended high school then university here. I spent almost 2 years as a country Veterinarian in NSW. Then it was back to Qld where I got married and bought a house.
Pain:
I’ve had health challenges since my teenage years. The fibromyalgia symptoms started in early 2011 and I was diagnosed in mid-2012. I stopped working as a vet and spent many years trying everything I could find. While some things that helped, there were a lot that didn't. The big turning point was the MoreGoodDays® program.
What does living with chronic pain mean to you?
I have reached the stage where chronic pain is a part of me, but not the whole of me, and not the most interesting part of me!
What does pain management mean to you?
Accepting my limitations so that I can control my symptoms to still live a fulfilling and meaningful life.
What techniques do you use to manage your pain in daily life?
Pacing. Mindfulness/meditation. Yoga/stretching. A balanced nutritious diet, supplements and medication
What has been the top 3 more important thing you have learned about managing your pain?
- Pain does not necessarily equal tissue damage
- Small changes add up and each small improvement contributes to a much bigger overall improvement
- Listening to my body and accepting my limitations
What are some top tips for people supporting people with chronic pain (family/friends/work colleagues)?
Don't assume that a person with chronic pain is choosing not to do things. People rarely fake chronic pain - they are far more likely to fake feeling well! If a friend/family member regularly cancels plans, offer to pick up their favorite food and just sit with them in their house. Turn up in casual clothes, with no make-up and a coffee (or something) and just sit with them.
If you had one thing to tell others living with chronic pain, what would it be?
All pain is perceived in the brain (even tissue damage pain) and this is good news because you can retrain your brain and improve your quality of life
Meet "Rainbow" Warrior Martine
This is me living my best life. It’s easy with chronic pain to lose yourself and not feel like the best version of yourself. When you start to find ways to manage the pain and feel like yourself again it’s like the sun coming out after the rain. Accepting that life isn’t always rainbows and butterflies, can take time but having more good days is a goal we all can aspire to.
Age: 45 but I still feel 21 at heart
Background:
I was born in South Africa and moved to Melbourne when I was 9. I lived in Boston for 9 years and I'm now very happily back home in Melbourne.
Pain:
I was diagnosed with Fibromyalgia and associated chronic migraines 22 years ago.
What does living with chronic pain mean to you?
Over the past 22 years, I've realized that pain can be both a blessing and a curse. Having an added challenge that most people don't have to deal with wears you down but at the same time makes me appreciate the good days more. I feel that what doesn't kill me makes me stronger. My pain is a constant companion but a reminder that I've done hard things and can do hard things. Knowing how much I've been through makes me feel empowered.
What does pain management mean to you?
Pain management to me is trial and error, what works for my pain may not work the same way for someone else. I have my tools in my toolkit ready for a flare and I believe a toolkit should be tailored to what works best for the individual.
What techniques do you use to manage your pain in daily life?
Daily exercise, hot showers, mindfulness, acceptance, venting to loved ones.
What has been the top 3 more important thing you have learned about managing your pain?
- That inactivity makes it worse even on my worst day but it's also equally valid sometimes to rest
- That everyone has their stuff to carry.
- That there's no point wallowing in my pain because it gives away my power.
What are some top tips for people supporting people with chronic pain (family/friends/work colleagues)?
Offering unconditional love and support. Just being there to listen and accept without judgement.
If you had one thing to tell others living with chronic pain, what would it be?
Without rain, there are no rainbows! We can still live our best lives while living with chronic pain. It doesn't define you. Ok, that was 3 things :)
Meet "Creative" Warrior Bianca
Age: 33
Background: I’m a former Novocastrian living in Tassie with my family (3 young children!), I'm a freelance designer and illustrator and also I have ADHD, so I’m often full of frenetic, 'rip-shit-tear-and-bust' energy (what my partner refers to it as) and that sometimes means my body can't keep up!
Pain:
It's been around 15 years since my symptoms came on. As a teenager, I had glandular fever, then chronic fatigue but I had also been living with really stressful life circumstances for some time and fibromyalgia emerged out of this. After an initial misdiagnosis and feeling unsupported and looking for various 'quick fixes', I have learned more about my condition and symptoms and how to still live well within the constraints of fibro.
What does living with chronic pain mean to you?
Trying to find equilibrium between competing forces - juggling responsibilities and the needs of the people around me while trying not to push too far beyond my body's capacity each day. From a somatic tracking exercise with my psychologist in the MGD program, I started thinking of myself as a house I’m building and considering how I can tend to its foundations and structure - like building a fence to protect my boundaries. But also think about how we can sometimes build walls around ourselves by ignoring or not acknowledging pain.
What does pain management mean to you?
As a creative, I often think about how I would ‘draw’ my experiences. I have an idea of my negative pain voice being a down-beat, defeatist character sitting on my shoulder (Colin Robinson from What We Do In The Shadows) who only focuses on my limitations. But my good pain voice is like Ted Lasso; realistic but hopeful, full of grace and kindness and acknowledgement of how things change.
Managing my pain then relies on listening to both voices to better see the whole picture.
What techniques do you use to manage your pain in daily life?
I think pain management to me is about trying to slow down and zoom out in those high-pain moments, observing the pain without judgement, listening to but not necessarily validating what the 'bad pain voice' is saying and turning up the volume on the 'good pain voice'. Then I can better see what tools I have at my disposal (e.g. pacing, intuitive movement, mindfulness, delegating responsibilities, rest, somatic tracking exercises, physio, etc.).
The MoreGoodDays® program helped in highlighting my patterns of thinking and how linked my pain and moods were. I am open now to observing thinking with curiosity and without judgement. My movement is more the intuitive kind, walking, some yoga/Pilates/swimming (with a fellow chronic pain sufferer friend) and then there is all the joyful incidental exercise running around after the kids.
All of this builds my mental resilience so that pain is no longer this dark foreboding shadow tainting everything, I now understand that I'll be okay, I'm still me and there's so much to look forward to. I think gently accepting the pain and that I will likely always live with pain, but not in a resigned, defeatist way, allowed me to see that my life is just what I make of it around chronic pain.
What has been the top 3 more important thing you have learned about managing your pain?
- Acceptance - it is not a resignation but a softer place to reside where I can more realistically see what is at play and what is possible.
- Recalibrating my pain dial - figuring out there are things I can do to help bring down the volume like somatic tracking, mindfulness, therapy, rest, pacing, and reframing.
- Finding the vocabulary to help understand and explain what is going on in my pain system - I understand it better now myself but can also explain it to other people and feel understood and validated.
What are some top tips for people supporting people with chronic pain (family/friends/work colleagues)?
Encouraging them to ask for what they need, holding space for them to talk about it if they want to without judgement, giving permission to adjust the expectations in line with their capacity and reinforcing that they are worthy of self-compassion and help.
If you had one thing to tell others living with chronic pain, what would it be?
Relinquish the instinct to fight against the pain. Let go of the need for it to be 'fixed'. Look beyond the pain to what you do have the capacity to achieve in your day, week, year, and life. Remind yourself what pain management tools you have at your disposal.
Remember that symptoms and pain levels fluctuate, it won't always feel like this and softer, less painful, more relaxed moments are possible.
We are always inspired hearing from people living with fibromyalgia. If you want to share with a supportive group consider joining our MoreGoodDays® Facebook community And if you are interested in seeking solutions, ideas and support for managing your fibromyalgia, we’re here to help. Check your suitability today.
