taletreader is completing the HAWMC and posted this yesterday. I read it and it got me thinking about ‘everywhere’.

It is hard to explain to people how much your chronic illness affects your life. It’s constant. It is everywhere. Even in the nooks and crannies you hadn’t thought about. Under rocks you hadn’t checked previously. It seeps through your bones and fills your chest. It hurts when it shouldn’t. It makes your ache when all you want is some relief.

Lately, Crohn’s has spread. It’s constantly in my head. Is it my medication? Is it my new friendships, my new relationships? Is it my busy lifestyle? Is it me working too hard? Why can’t I switch off?

Part of me – a bigger part that I care to openly admit – hates that it has left me open to all of this. If it could be all cut and I could be disease free, that would be lovely. Wonderful, in fact. Would potential solve many many things. I could sleep more. I cold go back to who I was before all this happened. Alas, we know that this can never ever happen. They can cut me open as much as they like, but there is no guarantee of a cure, of a long term fix. It seems like I am just jumping hurdles, waiting for the next thing to come along and kick me down to the ground again. To make me start over. To make me weak, to destroy my life. To destroy me, to test me, to make me.. well, different. To keep me in constant flux.

It is no wonder why I have the most difficult time with this. I have yet to find a place in my life where Crohn’s is not present. It infiltrates my every waking moment. Sleep is my only escape. But I sleep hardly. My insomnia has been relentless these last couple days. There is too much on my mind. I find it just whirring on and on and then I’m out, like a light, for a hour or maybe two, then I’m up again, rebooted and ready for some more processing. It is agony.

It is hard enough to explain to anyone – family, friends, colleagues, anyone, everyone  – about an invisible illness like Crohn’s; some thing that attacks my guts and my butt. It is hard to explain that I hide my pain. It is hard to explain, on top of that, that Crohn’s makes me an emotional minefield. It is hard to explain how deeply rooted my depression is. It is hard to explain why I act so happy and bouncy and chatty when really I am very unhappy. It is hard to change my behaviour and attitude and personality when it has been this way for so long. It is hard. Period.

I feel as if I am being ‘dramatic’ and ‘overselling it’, but then I think “well, it’s tough you know? And I can’t keep it bottled up anymore. It is a big fucking deal. And I don’t know how to deal with it.” I don’t expect anyone to deal with it for me (and that would be beyond anyone’s capabilities.. regardless) .. and once I get into thinking about ‘expectations’ I should really stop talking. I try to remain exception-less. With most things. Just play it how it comes. It’s maybe why I got into my last relationship and let it go the way it did. I might not have felt comfortable 100% of the time, but it was better than being a control freak. I can’t control my illness. Would I want to control anything else, to counteract that? That would be, dumb? Insensitive? Ridiculous? Laughable? Yes, maybe.

I keep coming back to a phrase, or a question, I asked myself last week: “How can I expect anyone to accept me when I can’t accept myself or my condition?” Added to this, how can I expect a great person to want me when I am not a great person myself? When my shit is more prevalent that my awesomeness? When being vulnerable is what I want to be, how can I let anyone see all of me, see how Crohn’s is everywhere, all of the time? I have not one piece of me left that is just Lou. It is all Crohnie Lou. I look back at photos before August last year and I long with all of my soul for her to be somewhere, in a parallel world, living without this horrendous thing. For her to still be around, living! Alive! Herself! Not tainted by medication or inflammation or knowledge.

I just don’t think 9 sessions is going to fix things. I’ve been in overdrive since last Monday. It’s more constant than ever before.

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