This is a phrase I hear all the time – from me and the many women I talk to with endometriosis. It’s the phrase I’m crying out in my head when I say something I don’t mean to.
It sums up my frustration really. As we all grapple with the conundrum of what bits of our personality are ourselves and remain ourselves, and what’s caused purely by pain.
Pain is usually all I can think about now. I spend most of my time distracting myself from it and as such it feels like the pain is sometimes in control of how I say things. Thoughts often leap out of my mouth before I can filter it.
Is this really me?
It’s rare for me to be completely distracted from pain. My pain and myself are in it together and most people around you can often forget about how bad you feel because of how you look.
Even when you remind them. People may say they understand, but do and say things that contradicts that view. It’s hard for people to appreciate quite how in pain and tired you are when you say dumb things, even when you try to explain.
It sort of comes out as another hollow excuse, but it’s not.
Pain cannot easily be divided from the emotions surrounding it. Apprehension sharpens it, hopelessness intensifies it, loneliness protracts it by making hours seem like days.
– Hilary Mantel
So sometimes your honest and not overly bleak or angry thoughts escape from you, and to you they’re totally normal, but outside of your mind they take on a new meaning.
You didn’t mean to snap at the person, that wasn’t your intent, you’re just exhausted. Pain has become the metronome to our world and in that moment the thought escaped your mouth. It was a genuinely neutral statement that came across as meaner than it was supposed to (or more horrid).
It’s one of the things I still really resent about my pain, how it affects my mood and mind – even temporarily – it often makes me into a person I don’t want to be.
When I’m like that I’m just a worn-down person doing my best to navigate a world of pain. I’m not being overly dramatic, I’m just doing my best, we all are. It’s so hard.
We are patient patients
Lost count of the times I am quietly uncomfortable with pain. I have to be patient. When you become chronically ill, you become a bastion of patience and tolerance. Be it the long waiting times, the process of diagnosis or overhearing people complaining about relatively little. Most of the time we’re quiet and resolute (when inside our heads we’re screaming). It’s important to remember how stoic most people with chronic illness are.
The people around us only hear a tiny proportion of what we go through. We filter out most of the mundane details of pain, I’d describe pain as punctuation to my life now. I say things and compose thoughts, and the pain peeps in to the sentences, adding those pauses, those gaps and sharking up the rhythm of my words and imagination.
A little perspective
I’m in more pain than I’ve ever been. I feel like I’m in a maelstrom, and I get glimpses of the world as the storms and clouds swirl around me. I feel ambivalent though, because despite the pain life is the best it’s ever been. My confidence despite everything is high, and I have everything I need despite pain. It gives me hope, because I’m worked extra hard to make my life easier despite the multitude of ways that pain affects me.
However I’m beginning to think that the pain has made me the person I am today. Not in the way you’d expect though. It’s given me perspective, for what I don’t need, for what I’d like to do and have, and crucially it’s taught me how to say no to a lot of things that I either can’t manage or don’t want.
Sometimes the way it’s changed my thoughts is a good thing. More for the good than the bad, but it doesn’t make those tired, angry moments any easier. I feel more in the eye of the storm, the quiet interlude before the next problem, safe and calm despite my body screaming because it’s the best way that I can manage to be. Loads of us are going through the same thing and we do it largely silently.
So I try to forgive myself of the odd outburst. I hope that others will too.
I’ve become “the pain person”
I am probably the person people identify as being “in pain”. It’s the thing they use to remember my name. I am OK with this. Pain makes you dwell on things you’d rather not and as such as I am immensely proud that every utterance I speak isn’t about it’s presence. I hide what I can of my pain, and many people are shocked to hear I am unwell.
In this New Year I’m going to do my best to keep the negative things (which are my natural, pain-fuelled reactions) quiet. I’ll try to keep them in my head and let the real me do the talking. This is easier said than done, but I’ll try to manage this by keeping my head about situations that annoy me and giving myself more time as I also get angry when I rush.
I’ll try to give myself more time to assess the situation I’m in and keep my levelheadedness, and when I am wrong, and I’m in pain and I’m tired and I snap, I’ll do my best to apologise and explain.
It’s not a hollow excuse, it’s my life, and one thing that you can certain of is that I am always honest about who I am and how my pain affects me, and I know you are too, let’s both cut ourselves some slack 🙂
I used to have breaks in my disease. It started when I was in my late teens. Now, I have had daily pain for the last year. I’m currently waiting for my 4th surgery. This time removing my remaining ovary and my uterus, scraping away any other remnants of endometrial implants in the hopes of a pain free life. Is that too much to hope for? I really hope not. It’s all I have to hold on to. If I have to live like this for the rest of my life, I’m not sure if I can.
Emily – I just hady fourth surgery and unfortunately I have little relief. My pelvis and left leg pain is the same. I have been on pain medication and nerve blockers for almost three years. I was hoping that I would be able to get off the medication after my last surgery. My world crashed when I realized this is now my life. At times I want to inflicted pain on my foot or arm just to feel something else. But I know that is wrong and I will never cause harm to myself on purpose. The point of me reaching out to you is to try to help. You need to go see pain management to get relief. You will never get full relief, but medicine taking the edge off it is a God sent. I can work and focus with my pain and nerve medicine. YouTube progressive pain management meditation. I’ve found a few videos that help me move my focus else where. You will have okay days and bad days. I try every day to accept this is my life. Just remember to try and keep trying. Don’t let the pain take you. Only let the pain win once a week and push through the other 6days. I make myself go out once a month. I make myself rest. I tell myself pain is just a signal sent to the brain. Don’t let this stupid disease win, don’t let it take you. Push