I am adapting… sometimes with grace and sometimes doing it ugly
My disease…
I live with chronic pain and fatigue caused by spondylitis (non-radiographic axial, peripheral and enteropathic). The disease changes all the time; sometimes I am improving, sometimes I am deteriorating. The biggest positive gains for me come when I support my medication by adapting my mindset and committing to moving my body everyday, with either stretches or therapeutic exercise.
My inspiration…
I use sit-skiing as my inspiration to pull me through the difficult days and to help me move my body everyday. I adapted early to using a sit ski, even though I wasn’t very disabled at the time. It’s meant that I can keep doing what I love to do with my family for longer.
My lived experience helps me and it can help you too…
Over my life, I’ve also met with a lot of health professionals to find ways to adapt. I’ve researched my disease. Along the way I’ve learned different adaptive techniques so that I can keep up with work, being mum, doing the jobs that need doing, keeping on top of my healthcare team and doing what I need to do to stay well. Although it’s different for everyone and some of us need to seek more health professional guidance than others, we can still learn from each other. Our lived experiences are valuable and sharing what we have learned is one way to overcome siloed healthcare, defeatist attitudes or social stigmas that we sometimes encounter.
I have a Masters in Organisational Psychology. During my career in the public service, I focused on changing social, group, and individual behaviour through the use of policy instruments such as legislation, regulation, and education. I have a keen interest in sports since I studied it at school and I have continued to learn about sports psychology and coaching while supporting my husband (who was a high performance athlete) and while training as a (very) amateur competitive road cyclist.
Sharing what we have learned can help others…
Lots of people have health-related issues they’re working on or adjusting to, and some of us live full lives in spite of those challenges. Some of us though, find it more difficult to live free and end up feeling like we’re prisoners to our health conditions. We could be living isolated lives like Rapunzel in her tower or we might feel like we’re shackled to a ball a chain that makes it difficult to keep going. If we all shared our ideas on the different ways that we might adapt to live free and full lives, then it might be easier for those of us who find it harder to find inspiration or to discover a way of adapting that works. Hearing these stories or approaches from a peer rather than a health professional is useful to some of us.
Experience less loss and grief and gain more freedom…
Rather than giving up what we love, it should be normal for us to reach for adaptive thinking or equipment to help us achieve our exercise, life, or health goals. If we broaden our “treatment focus” beyond medication and apply what works in physical therapy, sports psychology and training methods, mental health, wellness, and what works for our peers then perhaps we might slow down, or even halt or reverse, the slippery slide that leads to poorer health and wellbeing outcomes.
AdaptiveGo 