Being in pain all the time is exhausting. Sometimes I think “I should be used it by now, it’s been years” and most days I am. I can go about my life with not much interference from the ever-present pain and then other days I’m so tired and just want it to stop.  

I have to confess that lately, that’s been happening more. I feel very over being sore and being sick. I’m in a phase where I really just want a body that lets me do what I want to do without having to think about it very much.  Will I have enough energy? Will I end up paying for this hike, or this dance class or just cleaning my house with two days stuck in bed?  

In short, sometimes I just want a “normal” body, a body that “works”. Don’t get me wrong, I have accepted that this body I live in is a disabled body. However, that acceptance sometimes wears thin and I am just physically and emotionally exhausted.  

We don’t as a society give enough credit to pain, I think, or enough consideration to what being in chronic pain means. We often seem to think of it as a mild annoyance: it can be solved by taking some Panadol and if not, it’s just being a bit sore right? And we definitely think of it as something short-term, something that ends. Even the worst pain many people can imagine: giving birth, cancer treatment, surgery, a broken bone, are all sources of pain that have a clear ending or a fix.  

That is simply not the reality for many of us living with chronic pain conditions. While our pain levels may fluctuate (being manageable a lot of the time and then worse during “flare ups”) chronic pain does not usually have a “fix”. Living with chronic pain is usually about management. Every treatment we seek is not about getting to zero but about getting to a level we can handle – and that’s really hard to accept sometimes. We’re taught that pain is curable but for people like me it’s not.  

I’ve had to grieve that idea of a pain free life, of a non-disabled body, and a self that didn’t have to think about these things. I’m most of the way there, but some days are harder… when I’m in more pain, when I have to go back into the rabbit hole of available treatments, when a new symptom shows up or I get yet another new diagnosis, or when I’m simply just tired of dealing with pain every hour of every day.