Why I haven’t been around much.

I’m sorry I haven’t been posting lately. It’s been so long since I’ve blogged I’m sure there are readers wondering if the seemingly un-diagnosable disease I have has finally killed me. I’m happy-ish to report that it has not.

But despite the fact that I am not dead, I am definitely not living either. I’ve been on and off a slew of prescription medications over the last few weeks that make me crazy and a false diagnosis or two have sent me reeling into a world of self pity and depression. This normally leads me into even more writing and creative self expression, but quite frankly I’m too tired. It’s a genuine accomplishment for me to get out of bed before 2pm on a day off. I occasionally force myself to bake and I sometimes enjoy it, but most of the time, what I make has been turning out awful. I catch myself putting tablespoons instead of teaspoons and reading the same sentence over and over again because I can’t quite understand what “separate the eggs” means even though I’ve done it a thousand times. I add the sugar twice or forget to turn on the oven. Tired baking is by far worse than drunk baking. I’ve done both and drunk baking still turns out a decent product.

The doctors put me on a steroid for a while, which caused me to feel better for a while. My muscles and joints got better and it gave me more energy, but it caused me to not be capable of sleeping for long periods of time. Like, 72 hour lengths of sleepless living. I was a zombie. So I was tired all the time, and cranky. Then, they decided that the medication wasn’t the right move and they told me to go off of it. And somehow, I’m more exhausted off of it despite the fact that I’m sleeping so much. I go to bed at 8pm and wake up at 2pm the next day. Whatever I’m doing its definitely not living. And I keep trying to force myself to do more but all it does is make me worse. Then I can’ work. And if I can’t work I will lose my job. The thing is I’m not even sure I care if I lose my job because then, I could just stop trying. I really want to stop.

My brother and I both have chronic illness’. Chronic illness is, I believe, vastly misunderstood. I think people often see it as a weakness, the emotion that comes with a chronic illness. Or, that we are wallowing in self-pity. That’s probably what this entire post feels like to some people. And its completely understandable it would be seen that way. But its not what it is. Chronic illness is a constant state of grieving what you are loosing. When you are chronically ill, you lose something new on a regular basis. And its not like a death of someone, which comes suddenly and can be grieved immediately for however long is needed until you relearn how to live your new normal with out them. Its a continuous death of the things that you knew yourself to be. When you first get diagnosed, or even just first start to realize your sick, you get angry. You go through your five stages of grief, and eventually start to get used to that new normal. But then the pain gets worse,  or you need a sudden surgery, or your body is slowly declining, claiming bits of you as you go. Claiming the ability to walk without pain, or keep your balance, or think coherently. It starts taking your decisions hostage as your body can no longer live up to the ones you would choose, making it harder and harder to do things you love to do. And each time things get a little worse, and you lose a little more. And then, just as you get used to the change, you start the stages all over again. You’re in a constant state of grieving. It’s as though you have been ripped open, sewn back together, and then ripped open again. You never truly heal. You just get used to your new normal. And the new normal for someone who is constantly ill, is the awful realization that you will never be “normal”again. And to remain in a constant state of grieving and still dare to hope, and stare into the face of adversity, day in, day out, and still choosing to be positive. To be kind. That, although it may not look it, is the face of true strength. Choosing to be a good person, when your body is dying slowly, when your in pain, and nauseous, and tired. That’s hard. That’s a strength most people never find. Some days the pain is so deep, it feels impossible that I could be the only one feeling it. Like it is almost other worldly. Like it Extends beyond my body somehow. And maybe it does. Maybe people can feel it. People who are paying attention.

Think of all the people who get so cranky, downright angry and violent over such small things. Not getting their parking space, getting cut off in traffic or interrupted in the middle of a sentence. Simply, not getting their way. Think about how you get so much crankier and easily aggravated when you skip a meal, or just don’t sleep well the night before. We are all guilty. I get hangry all the time. Especially when doctors are messing around with my meds.  All these meds make you feel even more like you’re loosing yourself.

I have no idea who I am anymore. I have no idea how to be anything other than this disease. And I’m so pained by the loss I feel of myself. I know its getting bad because I don’t even want to look at cookbooks anymore. I’m just a lump who sits on the couch and tries not to feel her pain, physical and mental. I try to distract myself with other peoples realities on TV so I don’t have to face mine. Its not even that I don’t want to face it. I just honest to God have no idea how to do that. It’s an accomplishment to get out of bed, much less face my demons. And I have a lot of those. I have nightmares constantly. One recently showed a demon speaking to me through a friend of mine from work. A demon masquerading itself as someone I love so I can trust him. The whole time he talked to me I heard a voice screaming at me to wake up because Satan was trying to get to me. I have dreams like that a lot.

And from my seat on the couch I keep watching my family implode in on itself as we all try to carry a burden that’s far too big for us. We are all so tired from our separate burdens, and trying to carry each others as well. I believe we are being attacked by Satan, and I’m not sure why. How are we a threat to him sitting here buried in our pain? I feel like its tearing us apart because how can any one have time for relationships when we are all so exhausted from our burdens? Survival just isn’t enough, but I feel like it’s all we are fighting for.

I am buried right now. I wish I had a positive spin. Some inspiring word to state that turns all the stuff I just wrote into a fabulous blessing that God has shown me. But I don’t.

I will trust in the lord as I walk through this storm. I don’t have a lot of choice in what my life looks like, but that may just be the only choice I can make. And I know it’s a good one. I wish all of you the best in your storms.

More recipes to come soon, I promise.

 

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