The subjectiveness of pain is something that I find very interesting, and explaining the fact that pain is a normality in my life is one of the hardest things I have to describe to others who don’t know what endometriosis feels like.
I’m beginning to think that I have a high pain threshold. My “extremely bad pain” isn’t someone else’s. So learning what sort of pain you can manage relatively comfortably is a big part of pain management.
Welcome back pain, my old friend
My reaction to pain is something like “oh it’s you, you’re back again”. It’s some what an inevitability with endometriosis. I’ve come to accept that I will never be free of the pain that greets me. That it trails somewhere behind me on the days where I feel well, soon to catch me up.
Someone living without chronic illness would probably react very differently to that same pain, they would probably be really concerned, seek medical help, or take something.
My pain has become a new sort of normal to me. As normal as needing to eat or sleep. A new dimension to life, and an unwanted one at that. Something that I’ve grown used to, and come to accept.
However the natural reaction of those around me when they notice my moments of serious pain is to suggest that I should stop working and go home, that doesn’t exactly pair up nicely with the fact that I am finding a way to cope.
On the issue of rest
I’d be lying if there are many, many days where I don’t want to stay at home and rest. But the days I give in and do this are rare. Working, and living normally (as far as we are able) is an important coping mechanism for those of us disabled with illness, and for me taking sick leave and resting is something that needs to be rationed carefully – saved for the very worst of times.
Rest in itself is a bit of a misnomer with chronic illness anyway. Rest too much and it’s harder to motivate yourself to get up again. Sleep too much and you risk causing yourself problems down the line with an inability to sleep through the night. I know it seems very counterproductive to keep going despite pain and fatigue (but with the big caveat of pacing), life with chronic illness isn’t a simple decision, and it’s not a simple if/or statement.
Finding your upper limit of pain
With endometriosis you get to know only too well what those worst moments are. Within a few months of diagnosis you are starting to relearn your limits with pain. You test and relearn your thresholds. The upper limit of what can be tolerated comfortably and what can be lived with.
Living with a chronic pain like that caused by endometriosis means bottoming out what makes your pain worse, and avoiding it, like tiptoeing away from waves on a shore. In time you get really quite adept at not getting wet. So sometimes it’s not as simple as simply going home, or resting. I need others around me to recognise my experience of my illness, to realise that I know when the pain is going to subside and become more manageable again. That I have a handle on things and won’t want to be pushed out of sight or out of mind.
The times where I’ll reach the upper limit of my pain are thankfully rarer than they used to be. These are the occasions where I am forced to take my pain killers, or curl up in bed. Working is the driving force that keeps me focussed and goal-driven, I need this distraction from my illness, I need the reminders that I am still capable. To be denied these opportunities will make things worse.
This is the hardest thing to explain, that I’ve spent a good amount of energy, and endured a good amount of pain to make it to somewhere like work, and I’m happy to shoulder that burden up to a point if it means some normality. It’s very easy to say that I should be resting every time that I feel any sort of pain, but realistically that would limit me to a couple days a month where I could leave the house.
Ultimately those of us who live with pain know what we’re capable of managing with it, and that’s different for everyone. Your own unique experience of your pain develops with time, until you can manage more and more while it’s with you.