csf leaks – Are You Better Yet?

What’s a Rut?

There is a status quo of “suck” involved with living life with a chronic illness. Day in, day out, trapped in an unstable machine that your life revolves around. There’s a monotony to it: wake up, medicate, meditate, take care of doctors’ appointments, provide nourishment if the body will allow it, rest when necessary, and try to squeeze any bit of goodness out of the day whenever possible. But unfortunately, with most chronic illnesses comes flare ups – a period of time when symptoms escalate, usually causing maximum discomfort. I also call it being “stuck in a rut”. It can be utterly unpredictable: How long will it last? How bad will it get? Will it get worse before it gets better? Did I do something to inflict this misery on myself? Can I dig myself out?

Usually these questions go unanswered. I never get to the bottom of what causes a flare up. I can do everything right and still find myself stuck in a rut: eat all the right foods at all the right times, take my meds, get moderate but efficient exercise, go outside and soak up Vitamin D – you name it, I’ve done it right. But I still find myself curled into a ball on the bathroom floor wondering what I’ve done to deserve this punishment. And usually – it does get worse before it gets better. And only time will get me out. No amount of rescue meds, meditation, clean diet, or therapies can fix what’s broken.

What’s it Like?

So, what happens when I’m stuck in a rut? Life falls through the cracks. The laundry piles up, my room gets messier and messier, I make convenient over smart food choices, and I start to feel this corner of guilt get bigger. I don’t shower or wash my hair. I spend days in bed wondering when I will see a human being again. When will I feel the sunshine on my skin once more? When will the pain subside? I count the days I’ve been in a flare, until eventually the days bleed together and I lose track. I forget what day of the week it is, what date it is, and sometimes I even miss my appointments if things are really bad. On top of feeling like I’ve been literally rolled over by a steamroller, I begin to feel depressed. I get angry at my illness and sometimes angry at the universe, at God. I get angry at the people around me for getting to carry on with normal lives. I get angry at myself for getting angry. I slip further into depression. My rut gets deeper. I try to sleep as much as possible to feel as little as possible.

Getting Through It

Coming out of a rut isn’t just springing up one day, suddenly saying “Holy Moses, I feel better!” At least not for me. It’s a gradual improvement. The pain slowly eases up each morning. Today I can do a little more than I did yesterday. Tomorrow I’ll be able to do a little more than I did today, and so on. This might not be the case for everyone, but for me, the more I’m able to do, the happier I feel. The depression melts away. For now.

The Depression

If you’ve seen my Instagram, you know I’m constantly posting quotes about how our worth is not tied to our productivity. Well, if you only knew how much convincing I’m trying to do on myself. Our world measures our individual value by what we accomplish. It doesn’t help that my (ex)husband told me that I was basically useless on his way out of our marriage. Talk about a self-esteem crusher. That added to the fact that I’m sick and staring at the pile of clothes that I just want to put through a laundry cycle if only I were able. It makes me feel worthless sometimes. Going deeper into darkness when I’m already there is only perpetuating my pain. So, how do I love myself? Well, that’s something I’m learning one day at a time.

The Flip Side

One thing is true: I definitely have more love for myself when I feel well. Again, there’s always a level of suck to having a chronic illness, but there are some good times to be had too. Right now, because I’m stuck in a rut, this is what I know. This is what I can talk about. Hopefully soon, I will be able to get on here and talk about all the wonderful parts of having good days and what those mean to me; the joys of being upright, the reward of being out in society, the awkwardness, even, of living a “normal” life. But for now, this rut is my home.

The pain gets harder and harder to ignore. Sometimes I think that if I keep moving it won’t hit me. But this pain is slowing me down, stopping me in my tracks. I’m closing my eyes and begging for it leave me. I just want to read this book. Nope, can’t do that. I try something lazy like watching TV. Nope, can’t do that either. I sit in bed and stare at the walls around me. Trapped in my room by the pain that won’t leave me. I start to cry and I feel so alone. My head throbs and clicks with my tears. I know better than to get emotional because crying only makes the head pain worse, but sometimes I just can’t help it. I wipe away my tears, close my eyes and take a deep breath. I just have to hold on. This too shall pass.