Tuesday, June 20, 2017

The Pieces of My Illness That You Don't See

My illnesses are invisible, for the most part. So this title might sound strange. But there's "invisible', and then there's "kept under lock and key" invisible.  Technically, if I was good enough at pretending (which I have been often), I could completely keep my illnesses hidden, other than the IBD, because you can only make up so many excuses to literally run to the bathroom. You may see me look tired or distant, as if I'm having trouble focusing. You may notice I'm quick to worry or stress out. You may hear me mention how exhausted I am. If you're close to me, or read my blog or social media, you'll hear me mention that I'm struggling.  You'll hear me say how I'm feeling anxious or depressed, or how I'm cycling rapidly. You'll be aware of my illnesses. That doesn't mean you'll truly see the extent of them.

But there are so many pieces of my illness that you may never see even a hint of. Pieces that almost nobody will ever see except my fiance. I want to write about them though, because I think they're worth sharing. Not because they're extraordinary, but because to the public eye, I manage to hold myself together relatively well most of the time. It could make depression, anxiety, mood cycling, MECFS look like they aren't that big of a deal, to those who don't experience or understand them. What I want those people to know is that it takes Herculean effort some days to put on the mask. Herculean effort and three plus cups of coffee, to be more specific - at least for me.

What you don't see is how difficult it is for me to get out of bed in the morning, despite the fact that I am actually a morning person. On my good days, I like to be up early and feel my best in the mornings. Still, so many days I have to absolutely force myself to get out of bed. I have to remind myself that in addition to the fact that I actually like my job, it pays my bills. On weekends, I have to remind myself that my dog needs walking and feeding. That the house needs cleaning and we're almost out of food in the fridge. Ironically, most days I get out of bed extra early due to anxiety - the options, when I wake up at 4 am, are to lay in bed and have my mind race ad cause massive anxiety, or get up and feel exhausted. I don't want more anxiety than I already have, and I'm used to exhaustion. I pick what seems to be the "better" option. I am always tired. Always. There isn't a day that goes by that I'm not exhausted. Many days, I battle weakness. Numbness in hands and feet, even when I'm walking, is something I've become used to. There are days where it feels like the blood has drained from my arms.

You don't see how badly I want to curl in the corner. Or how I wish my bedroom sheets were an invisibility cloak. You don't see, because anxiety and hypomania often make me more talkative than I'd like to be, how significantly more content I am when I say nothing.  When I listen, especially to the universe, I'm content. The rain, the birds, a train whistle in the distance, the wind through the trees. There, my mind stills ever so slightly. One would think the opposite - less noise, more mental chatter. But it isn't the case. Less stimuli that seem to require it's acute attention makes it easier for my brain to rest.

You don't see the wave of anxiety that wells up, that I'm almost certain is about to come out of every pore, as you say, "It's better if we talk on the phone, what time can I give you a call?" and I become frantic for an excuse. You don't see the panic that I feel when you say you've invited three other people to our lunch, which I thought was us chatting one on one as friends, because you assumed "the more the merrier!" You don't see how my mind races when you change plans at the last minute. When we're running late, and my brain has to now recalculate the entire day based on our new time frame. You don't even understand why I need to rearrange it in my head, but to me, it's critical. It's not even a conscious thought. It's as habitual as, say, making sure you have your daily cup(s) of coffee in the morning.

You don't see how deeply I feel everything. I have become well-practiced at the mask. You may know I'm slightly bothered, but you don't see how I twist it around in my head for hours, days, weeks. I'm unable, it seems, to not do that. You don't see how deep the wound is, for even the smallest upset. How it makes me feel like I'm worthless. You don't see how I worry about virtually every conversation, wondering if the negatives are worse than I think, and the positives are just nice things said to make me feel better, that I don't deserve.

Most of all, you don't see the self-loathing. You don't see how much and how often I hate myself for the way I've acted, for my inability to handle situations that most people can. You don't see how desperate I am to be able to go with the flow, to be social, to calm my words and speak less when it feels like my mouth literally will not stop, sometimes with my brain almost unaware of what I'm saying. You don't see how much I chastise myself for getting worked up, visibly, sometimes publicly upset, over something - and often at someone - that I later can't understand why it even bothered me.  And no matter how much I remind myself that this is my illness, that it's all part of what I battle, I can never fully allow myself not to personally blame myself. I blame myself where I would never blame others with my illness who acted the same - I know it's not their fault, because I know what the illness can do. And yet when it comes to myself, I cannot give myself that compassion.

There are invisible pieces that have a positive effect. Every color is richer. I can appreciate a flower or a plant or a sunset more than most. I virtually feel the colors. My day, or at least my hour, can be made by the simplest thing - seeing (and petting!) a cute dog, helping someone with even the tiniest thing, a genuine compliment given to me. The rain is more entrancing to me. I feel a warm breeze as if it's about to lift me up and help me fly. A rich mug of coffee is simply wonderful - and getting it in a unique or pretty mug is an added bonus. Life has so many tiny, beautiful moments to me. Unfortunately, they often don't last. Each of the situations described above - the anxiety, the depression, the hypomania, the deep wounds, the lack of sleep -  all take over. But at least, between those, I can appreciate the littlest of things. I have to be grateful, at least, that I do have that. It makes the world, in these moments, perhaps not completely dark.

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