helplessness

Weakness.

I had a conversation with a friend the other day about the best and worst feelings in the world. When it came to mine, the best was freedom. Not necessarily freedom in any legal sense of the word, but rather physical freedom, the ability to get out of bed in the morning and walk around campus and sit in class and not worry about if I will actually be capable of doing those things on any given day. The worst was easy as well: helplessness. It wasn’t even a question.

Helplessness, weakness…those things are hard. We’re supposed to have those things to some degree as children. And then we’re supposed to outgrow them. Once we get to our early 20s, our physical prime, we’re supposed to be strong. This is the time to go and see and do, while we still can! That’s what everybody says at least. It isn’t true for me, or for a lot of other people with chronic illnesses. For me, it’s sometimes a monumental struggle to roll out of bed in the morning and make it to the bathroom without walking into walls or impaling myself on sharp pieces of furniture, and then to actually get ready? Even if the extent of my getting ready is sweats and hair in a ponytail, I’m usually exhausted before I ever make it down the stairs of my apartment and into my car to leave for the day. Of course, this is omitting the necessary decision every morning: to eat or not to eat. Pros: If I eat, I’ll have less POTS symptoms. I won’t get as sick when I take my medication. I’ll (theoretically) have more strength throughout the day. I won’t have to deal with the effects of hunger eating away at my stomach. Cons: I’ll be in pain. I can’t guarantee that I’ll be able to sit through class. I’ll have to keep myself in close proximity to a bathroom at all times, just in case. I may not be able to drive myself home at the end of the day.

Now granted, that isn’t on a good day, but it also isn’t anywhere near what a bad day would look like. It’s just sort of…average. To take the view of a bad day to an extreme, let’s consider times when I’ve been in the hospital. There have been times when I’ve had the back of my hospital robe untied, been carried into the bathroom and held in place on the toilet by nurses (read: strangers). There have been times when I’ve been too weak to wash, so I’ve been sponge bathed by people I’ve maybe seen once or twice before. I’ve had my teeth and hair brushed by friends and family, because I was incapable of holding my arms up for long enough to complete even those simple tasks. I’ve been totally helpless, entirely at the mercy of the people around me.

Believe me, there is no worse feeling than that. It doesn’t have anything to do with love, or trust. It’s not like I ever lay there in that hospital bed thinking that they were just going to leave me to rot. That isn’t the issue. The issue is that, if I needed to, if for some reason there came a time when I had to take care of myself, I couldn’t. That’s always a consideration. There’s always that “what if” in the back of my mind, what if I get to that point again. It’s rare, of course. Most days I can and do manage alone. But for me, total helplessness is somewhere that I have been and realistically could be again, and it’s frightening. But more than frightening, more than frustrating even, it’s…well, sad. Not sad for me per se, I’m not trying to have a pity party here, but sad because I have no choice but to become a burden to those around me. They might love me, but I’m sure my family has things they’d rather be doing than brushing my teeth and helping me bathe as though I was still a toddler. And that’s tough to handle.

All of the “It’s okays!” and “I don’t minds!” don’t do anything to help either. What normal human being wouldn’t mind, at least a little bit? The constant positivity makes me question everything else that I’m told. If there were one, “It’s sometimes a little tiring to have to take time out my day to do this for you, but of course I want to help you anyway” in there, it would make everything else just a tad more believable. I’m getting off topic though. Off topic-ish. To get back to the point…wait, I don’t know if I have a point. As is typically the case, I’m just trying to explain how my life has been impacted by illness. So, let’s make the point this: if you don’t know what I’m talking about, if you’ve never been in a position of total weakness, total helplessness, be grateful. Cherish that. I hope you never have to know what it feels like.

Self-Destruction.

Sometimes, I wonder if having a body that destroys itself has made its owner (me) more prone to help it along the way. Or at least, not to hinder it’s destruction. I suppose I should preface this post with the fact that I don’t drink, smoke, or do drugs other than the ones that have been prescribed to me, nor have I ever done these things. I do exercise when I’m physically capable, although that’s not too often these days, and I’m generally a person who could be qualified as a “health nut.” Generally. Not always.

In addition to being a freak about my health on the surface, I’ve also developed this nasty tendency towards less visible but still self-destructive behaviors. In some ways, one might even say that I’ve become a bit masochistic. When I’m curled up in a ball on the floor, in extreme pain and unable to move, sometimes the only thing I can do to keep myself from screaming or crying out, begging for help in an empty room, is to dig my nails into my arms. At the time, the pain from that seems minor, almost non-existent in comparison to what’s happening internally, but I’ve on occasion woken up afterward with scratches down my arms so deep that I’ve had to wear long sleeves for weeks to avoid the questions which would inevitably come.

This tendency to create new pain to distract from the old, greater pain to distract from the lesser, is clearly not a good one. At the level that I’ve discussed, it probably isn’t dangerous, but it definitely isn’t beneficial either. That said, I don’t have much of a solution to this unconscious habit which I’ve developed. It’s hard to explain, harder to justify. It sounds slightly insane. After all, creating more pain is hardly a solution, right? But in the moment, it’s the only solution there is. There’s no pain medication that will take off the edge, unless it’s during a period of hospitalization and I have access to a morphine drip. Once we start talking drugs on this level, addiction becomes a very real issue.

Then, there’s food. Granted, I’m surely not the only sufferer of CD (or IBS or UC for that matter) who has a difficult relationship with food. It’s necessary for survival, but also simultaneously causes extreme pain…I’m starting to figure out where my masochistic tendencies come from. In any case, I’ve spent a lot of my life not eating by necessity. I physically couldn’t keep food in my system, and when I tried, malabsorption stripped me of any benefits anyway. I’m lucky now in that a lot of the time, if I’m careful about what foods I choose to eat, I can actually eat. And yet, sometimes I don’t. Because sometimes, the only thing about my body that I can control is what I put into it, and it’s just easier to not put in anything at all. Yes, I know this isn’t healthy. Yes, I know this is a warning sign for an eating disorder. I’m working on it. But that’s not the point of this post.

The point, I suppose, is this: it’s so hard, so frustrating, to do everything right, and still have a failing body. While I do realize that the little things do make a difference, to some extent it doesn’t matter how healthily I eat, how well I sleep at night, how hard I work out, or anything else. I never had a chance, and that’s hard to handle. A sick body shouldn’t lead to self-destructive habits, but at least in my case, the honest truth is…sometimes it does.