Feb. 2nd, 2009


Feb. 2nd, 2009 05:33 pm
fortunavirilis: (Everything's gonna be alrighted (SA))
Friday after my doctor's appointment Hu and I drove home and I kept my composure the entire time. But in my head I kept hearing 'intractable'- not responding to treatment. We both sat on the couch and I went to do something, I don't know watch tv maybe, and I just started crying. It was finally so very real in my mind that this isn't going away. This isn't going to be cured any time soon. The best I can hope for is we find the pharmacological mix that works best, and when that stops working we move to the next one. I try so hard to be strong, to go to work, to do the errands and such that need to be done. I try to put on a happy face for our house guest/tenant. But behind it all is this hidden broken-ness. My brain is damaged in some unknown way and no one can make it whole again. We all hear the words- chronic, invisible illness. But it is hard to describe how heavy those words are. The little adjustments in your life. I've always known how to put on a stoic face and deal with things (how else did no one know I was being abused for 11 years). But when you're just too tired to move sometimes and the dishes still need to be done. And you have to get up and go to work because if you don't then you'll get fired. And my income is how we can pay the mortgage and most of our bills. The weight is so heavy on top of the pain already there from the jerking of my body against my will, and the fear of what my brain will do next. The weight is just so overwhelming. Even with Hu around I feel so alone. He is whole, I am not- how do I explain to him how I feel?

Friday I saw one version of my entire life before me and it was filed with pills and missed gym visits because my shoulder was too sore or I was too tired. It had me struggling more and more to work and Hu trying to figure out how to make enough to cover the bills if I couldn't work anymore. Some days I'd be energetic and we'd rush to take advantage of those days and other days I'd just want to sleep. We'd never have children because the medications are dangerous for pregnancy and how could I take care of a child with all the fatigue I already have anyway. I couldn't work and do that. So, even though I don't want kids now I knew that children were out of the picture forever. And looking more and more at this life ahead I grieved. I should have done more before so that I don't feel like I'm missing out so much now (or in the future). But I can't change that. And I'm grieving for a future life full of little limitations that all add up and no one can see. And I am grieving for a past life not spent more fully. I'm grieving for a present that is full of fatigue and pain and fear.

I am here and I hurt and no one can see me because it is my brain- I'm not allowed to say 'all in my head', but the source really is all in my head if you look at it a certain way. The fact that I look fine won't change. When I'm spaced out from the meds, people think I'm just tired. When I'm twirly dizzy they think I'm just a klutz. When I seize some people don't even notice and Audio just leaves the room so Hu can handle it. I have no network of people in real life who I can lean on besides Hu- everyone in my family is too far away or too in to their own problems. And I just want someone to say 'yes, I understand- sometimes you'll cancel on me and sometimes you need extra care- but I like you as a friend anyway'. I don't have that at all locally. I am utterly alone and the burden of being the primary breadwinner as I am slowly deteriorating is starting to kill me with having Hu as my sole support network as well. I'm grieving for the fact that he didn't choose this broken brained person when he got married- it isn't fair to him. He has no idea what I'm going to be like on any given day- how many spoons I'll have, how bad the side effects from the meds will be, if I'll seize. I know the seizures terrify him. He swears he loves me just as much as when I was whole, but it has to weigh on him too. 'Wouldn't it be easier if I wasn't with her?'

I'm grieving because I don't want to hide my illness anymore, but when people know they ignore it anyway. I miss friends and touch and laughter so acutely it stings. I've never had an easy time connecting with people, but my brain and my meds are making it 100 times worse just to have a conversation. So how can I make any friends when I can't TALK to them?

And I know that there is a great life to live ahead of me. I'll have laughter and love despite the epilepsy. I'll learn to adapt and make it work somehow. Part of me does know that. But right now I can't get past my current pain, my wasted past, the burden I am on everyone around me, the unreliability of my body from day to day. And through it all I have to work and put on my game face. Grief is for the private moments I can capture when I am home and we don't have Audio around.

This is long and rambling, but the grief is so acute right now that I can't self-edit and I tend to jump around in my head. Right now the world is a place where no one knows anything and no one can fix anything and I just have to keep working harder and harder to stay in the same place. Family says 'everything is going to be alright', but it keeps getting harder and it keeps getting worse and I never get the rewards anymore for any of my pain. Intractable means nothing is ever going to be like it was and I have no idea how to fit that in to my life.


fortunavirilis: (Default)

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