My thoughts:
To capture my feelings, this is how things felt when I first found out:
I keep going on here...looking at the front pages, the "What is ME?" section (or whatever it's called) and not venturing any further. I'm not scared I am just shocked...I can't believe this is part of my life now. I wake up every day and the thought of it isn't hanging over me and then all of a sudden I remember. I don't know what I feel, but it's not disappointment, bitterness or anger...it's just disbelief. Is that denial?
It's like I've broken up with a bad boyfriend (the unknown) and I've woken up as a single person for the first time in years...then I suddenly remember the bad boyfriend and want to be with him again (or undiagnosed and ignorant to the facts).
Maybe one day my mind will marry my body and they'll live happily ever after and deal with all this...but for now I think I am still in a bit of a denial state.
I have tried to write this post about four times and there are just no words, no words at all, that could possibly capture any true essence of what it is that runs through my mind.
I am so angry right now. I don't ever think "why me?" I think "Well why not me?". I am angry because I think of all the times I beat myself up for being lazy, dispassionate, uncommitted and I was none of those things. I was and still am ill.
I keep telling myself over and over: I wish it was Crohns. I don't share these thoughts with anyone because I'm scared. Scared they'll say stupid things like; "You don't wish it was Crohns." Yes. Yes I do. "Crohns is horrible!"
This isn't exactly the Ritz of illnesses, either. But because you're not taken seriously or you spend years jumping from one diagnosis to the other you take a battering and you don't share how you really feel. Not really. Because you half expect people will open their mouths and more often than not that they'll not know what they're dealing with or talking about.
I've felt like this isn't a big deal, but to me it feels life altering. Not life changing because that's reserved for good things. I guess it's like when your husband or child dies (not claiming it's happened, but I have observed) . It means the World to you, forever, but to every one else they get on with their lives and wonder why you haven't got on with yours. Why you're still stuck in the phase of caring about it. Thinking about it. Talking about it. And everything around you is new and has altered, too.
One day I "knew people with ME" this horrible illness that seemed to come in and strip people of their energy and didn't give it back. Made them walk in a World of cotton wool and fudge.
And next I was joining this World and not really feeling a part of it. I'm stuck in between not being accepted by the people who see themselves as War Heroes to the illness and not being accepted as fit by the healthy people. I'm in between the two Worlds with no map of where to go next. And no answers, no solutions and only myself to rely on for the answers.
It's terrifying.
