I now believe that there are as many different experiences of pain as there are people in the world. We all have our own pain and cope with it the best ways we know how.

This is why it has been so surprising to me that people need to rate or compare pain levels. What purposes can this have? Is there a winning hand you can hold? A pain flush?

I have been to the hospital emergency ward a few times in my life and will always be asked the same question… “please rate your pain?” the fact is that I wouldn’t be at the A&E if it was something I could avoid or something I didn’t have to do, so the pain had to be strong enough to make me go to A&E!

As someone who is a chronic pain sufferer I experience pain all day, every day, and I have never reached a point where I am happy about it or have accepted it as part of my life. I still don’t like it or want it. I have often wondered if I will ever learn how to accept it. Is it possible?

Strong pain medications make me so drowsy but it still doesn’t drown out the screaming pain inside … Often I simply fall asleep from exhaustion.

Living with chronic pain makes me feel like life just passes me by whilst I am struggling to do even the smallest of things. So I try and disconnect my mind from my body. Disconnect myself into not thinking about it by thinking of other things; if I can.

Surprisingly though, this is not the thing that I hate most of all about my pain. No, the thing I hate the most is that it changes me and I don’t feel in control of the changes.

Pain changes me to someone who has become a recluse. Pain changes me to someone who is prone to snap at my husband when it feels too much. Pain makes me cry when I used to just ignore things. Pain makes me a distant friend who can’t communicate as easily and as often as I once could, barely at all in fact. Pain has made me unable to do many of the things I loved doing. Pain has changed me and my relationships. And it’s hard to accept that.

I am told that the key to a long and happy life is accepting the things we can’t change, but I don’t know if the person who said that was feeling as though their body was being crushed and their skin felt like it was in fire?

Perhaps I will never know.

Even though I read and repeat this mantra periodically I still don’t seem to be able to master it. Perhaps trying is the most important thing. I hope so.

Pain has me writing this in the small hours of the morning while the rest of the neighborhood sleeps. While many of my friends are asleep. While my husband sleeps.

Pain makes you feel alone in so many ways.

I recall my doctor telling me to try and do things for others, she seemed unaware that I had been organizing a charity and trying to lobby for autoimmune art exhibitions… and although I have managed to get some of these things going I must say that it doesn’t lessen my pain, it can actually increase some of the forms of pain that I cope with.

These days I play pain poker with my days. Yep. Pain Poker. It’s where you bet your body, your sleep, your quality of life on something, like a trip to the movies for instance, and you either win that hand and get to go through it and suffer minimal cost or you lose and pay the price, sometimes meaning it will take days (even weeks) of not being able to move etc.

I suffer gamblers grief and remorse but I wind up back at the table and dealing the cards again. Even upping the ante at times!

Nowadays I have to choose who is worth losing for. If I gamble my body, and more precious time, who should be worth the risk? These days I have been doing this for the one person who has stuck by me and holds my hand and wipes my tears when I feel like I can’t go on. My husband.

To make him a meal, go to the movies, draw him some artwork or just go for a drive. This is often the pot I am playing for in the Poker game. I would dearly love to be able to play for my friends and loved ones too but these days the collateral damage is high and very personal. But it’s all I got.

Over the years I have tried many things to be able to increase the chances and the fortunes but as I sit here today I must accept that the pot is growing smaller and the wins are few and far between.

… But that’s what makes them so precious and memorable!

Gentle hugs,

Trish