Some things in chronic illness are very circular; they come around a couple times a year or within a set of circumstances, to remind you of what you are doing, who you are, where you are going. Because its easy to forget sometimes, just what is going on. You get caught up in all the pain, the treatments, the edgy intense confusion that surrounds being sick, being in hospital, not being well enough.
For me, I always needed reminding that it was Crohn’s Disease; nothing more, nothing less. I needed to deal with what was right in front of me, at the time, and live right there. There was no point of dreaming about what if and if only I had done this, etc. I had to be present. I had to deal with that.
That has been a resounding theme of 2016 much like it was here, on June 21st 2012.
“No, Lou. It’s Crohn’s, deal.”
Someone tweeted this phrase about themselves today. It was pretty damn good, straight to the point.
When it comes to Crohn’s Disease, you have to deal. That’s it, you have to deal with it. You most certainly can not run away from it and you can not hide. It will follow you around, no matter how strong willed you might be or how much you can deny it. You have an life long condition that has no cure. It’s a pretty raw deal you’ve been dealt. And you will have many things to battle ahead of you; things you don’t even know about yet, things that won’t even be actual Crohn’s, but nonetheless, they will come and get you. It’s all about being honest.
Take aside the medical things that happen, you really do have to be honest with yourself. Honest about your boundaries and your limitations. I admit I am terrible at following my limitations sometimes, despite knowing them pretty well over the last 9 or so months. I am so acutely aware of them, they sometimes make me stop dead, silent. There are alot of things about Crohn’s that I can try and take in my own stride, but this isn’t always the case. I find the fact that I can’t work like I used to the hardest. Or the fact that I tired out very easily these days, frustrating as hell. I am not the person I used to be.
Being honest with yourself is hard. And it’s a learning process. But I think being honest with the person in the mirror every day is the best thing you can do for yourself. Yes, you might be having a crappy day or a few of them, but they go away. And why do we feel the need to lie about the fact that we are feeling run down and sometimes beyond feeling any sort of happiness? My bad days are outweighed by the very good days that I have. I show the people I know that there is two sides to my condition; the days when I can sit comfortably and walk around without pain and do all the little things I take pleasure in to make my day great; and then the days that make me hate people who know nothing about pain, of my grumpy guts and my terrible joints, the days when everything takes efforts beyond my normal means, when all I want to do is sit down and sleep or read, but have to work instead.
So by being honest with myself I am making it much easier to be honest with everyone else. They will know when things are going well for me, and when they are not. Because I didn’t lie about it. I can say that I was truthful about what I felt and when I felt it. For the people who really know me, who see me on a daily basis, they are getting to know that; not relying on just my words to tell them about my ‘suffering’. I can hide as much as I like, but that does not help me. Hiding my symptoms and my problems and my fears does not help me become a better person, it only makes me liar. And I can’t lie about this, the biggest part of my life right now.
We all wonder how these myths and rumours about IBD get started; it’s because someone hear something, somewhere, some time that wasn’t true and didn’t correct it. These ‘myths’ and ‘false claims’ make it harder and harder for us to talk more openly and freely about IBD and help people understand us. It is a win win situation. We have to start.
And it starts with you.
Sometimes my Crohn’s is a big black cloud full of rain and hail. Other days, its breezy light clouds that let the sun peek out.
That how I see my world. That is my honest truth. What about yours? How do you personify your Crohn’s?