Q3 (Guest & Community): What have been some of the ways chronic pain impacts your life and how do you live with it?
One of the biggest ways in which chronic pain impacts my life (other than the pain) has been adjusting to the chronic fatigue that comes with living in a body that has to work extra hard to do the same tasks other people may find easy. Fatigue is more than feeling tired; it impacts every part of the body and is not easily fixed with a single good night’s sleep. On the days that I experience high levels of fatigue, my body is so heavy. Every step I take feels like I’m walking through mud with a 20kg weight strapped to my back, and my brain feels like it is clouded by thick fog. My senses become easily overwhelmed, and my thoughts become messy and feel far away. As a result, it can be difficult to focus on pretty much anything during those tougher days.
Experiencing chronic pain/health issues has forced me to slow down every part of my life whether I want to or not. It is humbling and very confronting. If I do not listen to what my body needs, I know the consequences will be severe and potentially dangerous. When I started to take my wellbeing seriously, I had to take an honest look at every single part of my life to identify what my stressors/triggers are and investigate ways to manage them. I then started to explore which areas of my life can be simplified overall. I have started treating my energy like it is an investment in my future and protecting it fiercely. I used to excitedly say yes to every social event and opportunity I could and pay the consequences later, which was completely unsustainable. Nowadays, when invitations or opportunities arise, I think about my “energy budget” first and consider whether I have enough saved up to not just attend but be able to bounce back after.
Setting boundaries around my energy budget has been a hard lesson, one I don’t think I’ll ever stop learning. I have had to become extremely comfortable with saying no--even when doing so upsets others, because my right to a safe quality of life is non-negotiable. I’m also not perfect, and sometimes I know what my limits are and push them anyway because I really want to participate in something. Being conscious of this can still be supportive, though! Because I can still utilise harm reduction practices to try and soften the blow when I inevitably crash land later and explore accessibility options that can reduce or eliminate barriers to participation.
