I find myself relating this more and more.
In the start of Crohn’s and this “adventure”, I thought I was going to be one of those patients / sufferers that was always honest about everything.
But I soon learned a very important personal lesson.
It is simply exhasuting doing that.
Put simply, life gets in the way of being honest. Not everyone wants to know the details of your life, be it whether or not you’re in pain. Constantly being asked if you’re okay is frustrating and very irritating. So you start to just say that dreaded word “fine” and people stop hassling you. Its not that you start to “lie” or just ignore them, you are simply trying to get on with what is going on in your life. As you rebuild yourself, you forget about the constant pain. You want to go forward and you really do forget about all the buggering soreness you’re in. You forget as best you can by distracting yourself with work or chores or writing or reading. You just get on with a normal life. But the pain is always there. It never leaves.
And when it does, even just for ten miunutes, you get suspicious. Where has it gone? Seriously now, come back, I don’t like it when I can’t feel the soreness. Have I blacked out for a moment? I feel unwell without the pain, please come back, make it all better again. It is sickening that that is something I have wished for. When my butt is in tatters and I can’t sit down properly because the soreness of my cheeks makes my back ache, I want to feel the pain because then I know something is wrong. When it gets too much and I feel numb from it, it eases off and I feel weird and sick without it. Odd, I know.
But in the grand scale, in the whole week of my life, I am in pain, every day, in some way, shape or form. And for anyone else, that is torture. A headache would be enough and that hardly lingers more than a day for all those healthy people out there. But if its not my sore butt (which hasn’t eased any amount lately, just a constant, steady throb) it is my knees and ankles. Then if that subsides, it’ll be my back and my hips. There is always something. Then, after all that, just for a change, I’ll get lovely bowels movements that make just wish my arse didn’t exsist. These usually happen when I’m at work or going to go out with friends – and this is incredibly frustrating because every single day until then, it was all so managable and didn’t interfer with my ability to “do my life”. Alas, my Crohn’s and its assosiated aches and pains don’t let me.
People assume (naively, even after all the time it seems) that my pain will be solved with some pills and some rest. At work, the latter is a rarity. I am lucky, extremely lucky, if I get two days off together. And taking pills is not something I personally subscribe to; getting an addiction to painkillers (even at a low level dose) isn’t a issue I want my body to have. It is the one thing I can absoltuely control – by not taking them – so that when I am absoutely in need of them, I can take them and they work. I have learnt how to manage my pain to a point where I hardly notice I am doing it. Smiling through the pain is one way. Sarcasm is another. Being honest with my boyfriend and parents is another – being honest with someone helps the sanity I have to go out and do another day of activities without exploding – Management has become second nature to me.
As the days pass into weeks and then its all of a sudden a month since my issues began, I just get on with it. What else can I do? I am stronger than this fucking condition and its “control” it has over my weakened body.