Dear loving beautiful fellow humans,
I feel I am a positive person. Things get me down or stress me out just like anyone else, but overall I have a pretty sunny disposition on a day to day basis.
Maybe that’s why it can be such a shock to people when everything gets a little too much for me. People are used to seeing me with a smile and a bounce in my step. They are used to me being helpful and friendly and warm and welcoming. I’m loud and giggly and silly. What people don’t realise is the sheer energy that this takes on a daily basis.
You see, I suffer with chronic wide spread pain. I’ve suffered with this for over half of my life in the form of constant migraines, painful joints, ceased joints and muscles, pulled tendons, sciatica, headaches, literal agony to the very bone. I try not to complain. But I do complain. I try not to let it get to me, but it does sometimes.
Every day I wake up and I am immediately met by whichever body part is going to cause me problems that day. My finger joints don’t work and my wrists are extremely weak first thing. My knees are generally locked and I have to push them into action with each painful stretch. My ankles and toes scream at me. But I get up. I try not to speak to anyone until I’ve had a chance to move around a little and make a cup of tea. I try not to interact with others for the simple reason, that I don’t want my pain to come out of my mouth in the form of venom and toxic waste.
Getting the kettle on is a challenge. Thankfully I love my cups of tea!! Some days I have to admit defeat and ask one of the children to get the lid off the milk or to fill the kettle. But most days? Most days I will manage, mainly through stubbornness. Mainly through my need to not give in. Having to ask someone to help me with such a simple thing can reduce me to tears and that is not okay on a daily basis.
Once I’ve been moving around a little, things ease up. But not in the way you think. Every single movement I make still hurts. My body parts resting on the chair? Hurts. Holding my tea in my hand? Sends waves of pain and locks my elbow slowly. Moving is uncomfortable but staying still is sore too. It’s a constant battle of readjustment and movement inbetween rest. This is on a good day.
Some days it’s only this type of pain with the occasional shooting pains I currently have in my foot. Other days it is so much worse. Days like today. When I’ve woken and I can barely move my hips and my sciatica is so extreme it giving me a headache from frowning.
Many would say, take something for the pain. Having been on too many medications to remember, I can safely say that medications do not make this any better, for me. They come with their own side effects and those only serve to then make everything even worse.
Some might say, do yoga, try meditation, change your diet. I do and have done all of these things. And these have and do, help immensely. I can’t even imagine the pain levels I would have, if I didn’t meditate or practice mindfulness or watch my diet.
The reason I write this letter, is not for sympathy. It’s not a woe is me. It’s more of an explanation as to why, sometimes my pain slips out of my mouth. Why sometimes, I can be short tempered. Why sometimes, I can seem withdrawn or unwelcoming. Why sometimes, I can be distant. Why sometimes, I can forget to message back. Or forget plans or double book.
I am not suggesting everyone just blame their crappy days on pain or that these issues above are acceptable. I am not saying we should just say ‘oh it’s okay, she’s justified because of xyz’ I am not using my pain as an excuse. I am not justifying yucky crappy behaviour.
I am totally and fully responsible for all that I say and do. I fully accept my pain and all that goes with it. I am also fundamentally a kind, loving, happy person Tey to remember that next time I allow my pain to slip out of my mouth.
All I am asking, is that if I happen to snap at you one day or forget to call back, or don’t want to talk right now- that you try to understand. It says a lot more about me than you. It says that I am struggling a little. It says that my pain slipped out of my mouth for a moment and that the ‘happy non pain’ mask slipped for a second. Try to understand and not judge me too harshly for it. I judge myself badly enough in the moment things inadvertently slip. I cry into my hands and feel devastated that I may have just taken my own stuff out on someone who is just there at the wrong time.
Because you see, some days just getting up and showing up is all the strength I have. But I will still go above and beyond anyway. I try not to let pain define me. I try hard to be as normal day to day as I can. I try to listen to my body and rest appropriately. I try.
But I don’t know who I would be without my pain anymore. I’ve had it for so long it feels a part of me. It’s like a sadistic friend who drags you down with them. I am proud of how much better I cope now with this. I know I suffer significantly less than I used to. I know I am doing well and healing slowly. But I also know that some days- I just don’t have it in me to pretend it’s not there.
So try to understand, when someone with severe chronic pain snaps or allows pain to slip out of their mouths, It’s not you. It’s not usually what you’ve done. It’s a lot more about pain and them. It’s about them, not you and they know how blessed they are to have people like you who show up and don’t give up, on them.