01-03-2022 07:30 PM
01-03-2022 07:30 PM
01-03-2022 07:30 PM
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.
01-03-2022 07:30 PM
01-03-2022 07:30 PM
@Bow , @Former-Member , what makes it worse is have to get up 4 times every night to go to the bathroom
01-03-2022 07:34 PM
01-03-2022 07:34 PM
Impact is great @Former-Member , @Bow
As if I do too much , I pay for it for the afternoon and more
Like when I feel like doing more I have to remember when to stop or else
01-03-2022 07:35 PM
01-03-2022 07:35 PM
This really stood out to me with your response @Former-Member
"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 think that act of kindness to yourself could be relatable to so many.
01-03-2022 07:35 PM
01-03-2022 07:35 PM
@Shaz51 I can only imagine how frustrating those constant interruptions would be! I get upset when I have to wake up just once to go to the bathroom after I have finally been able to sleep. hugs
01-03-2022 07:35 PM
01-03-2022 07:35 PM
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!
- @Former-Member 💛
01-03-2022 07:40 PM
01-03-2022 07:45 PM
01-03-2022 07:45 PM
@Former-Member , @Former-Member , @Bow
We have the alarm go off a half an hour earlier so it gives me and my body time to warm up and moving before having breakfast and leaving for work
01-03-2022 07:45 PM
01-03-2022 07:45 PM
@Former-Member @cloudcore @Shaz51 @Bow I try to structure my mornings so that I have time to slowly ease myself into my day. My morning routine is usually the same day-to-day, too. I love having my morning must-haves right near my bed for easy access, like water and meds and even a kettle if I need a cuppa straight away. I give myself that time to check in with myself and slowly "dip my toe in" and give my body gentle wake up time rather than rushing into the day. No appointments before noon if I can help it! 😂
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SANE acknowledges the Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.
SANE values diversity. We are committed to providing a safe, culturally appropriate, and inclusive service for all people, regardless of their ethnicity, faith, disability, sexuality, or gender identity.
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