I’m a lucky woman. Did you know that? I have many people in my life who truly love me, for exactly who I am. However, these same people also want what’s best for me. And often times, what I like to do is not necessarily what’s “best” for me. I’ve been thinking about this a lot today as I drank my coffee, wrote a post, and read other people’s posts. There’s a common thread to the things people bitch at me about. They all come back to my physical condition and the ways I choose to manage it’s effects on me. Here are some of their most common concerns:
- I smoke too much (True.)
- I have a wildly irregular sleeping schedule (Also true.)
- I drink way too much caffeine (Definitely true.)
- I don’t eat regularily or healthy enough (Yeah, that’s true too.)
I almost always respond to these worries the same way. “I have insomnia”, “My pain keeps me awake”, “No, the caffeine isn’t keeping me awake, it just helps me function like everybody else.” “I eat when I’m hungry and I can’t afford to eat all organic shit anyway.” “Smoking helps me handle the pain.” “I quit doing drugs, drinking, and texting while driving. Leave my coffee and cigarettes alone.”
That last one is particularily pathetic as I shouldn’t have been doing any of those things in the first place. But hey, we’re all human beings here and we like being recognized for what we’ve done right… Even if what we did right was stopping what we did wrong. I’m getting off track here though…
Bringing it back, here we have a list of my loved one’s concerns and also, a list of my answers (or rationalizations) for those concerns. Now what would possess a 25 year old woman to write about these not so redeeming things? The same thing as always, obviously: a deep seeded need to be understood. So what I intend to do here is explain my thoughts behind the answers I give my loved ones, in hopes that they’ll drop by my blog and read it. And maybe, just maybe, they’ll realize I’m not just some “hold onto your vices” stubborn 25 year old who’s just feeding them horse shit for kicks.
See, I know that smoking is bad for people, especially people with health conditions (like myself). Expanding that subject, I have fibromyalgia, which is a “chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.” I was diagnosed at (I believe) 16 and have lived with it my entire postpubescent life. It causes me severe muscular pain and soreness, debilitating fatigue, broken sleep/insomnia, displaced bones, and (during “flare ups”) depression or anger. These are just some of things this charming, often misunderstood and misdiagnosed disorder have brought me. The FM (Fibromyalgia) fueled my active addiciton for a long time as I searched for a way to maintain any quality of life. I have tried multiple physical therapies, taken many different medications (all of which I then stopped due to intolerable side effects), and have completely lost (and found) myself over the years; all as a result of this disorder. It effected me, then defined me, tried to destroy me, and now, just lives with me; within my body, mind, and spirit. Physical ailments often times effect our mental outlook on life. It’s a mostly unavoidable side effect of being ill. No one wants to be the “sick girl”. No one wants to envy their friends living freely while they struggle to so much as make their bed. No one wants to lose romantic partners and the aforementioned friends because they can’t take, handle, or understand what’s happening. No one wants or chooses to live like this. These are some of the things that slowly build up and effect my outlok on life. This journey has not been a fun one for me. I spent a lot of years cycling through the 5 (more like 500) stages of loss. It’s not just grief that causes this people! Loss in general does as well. With a disorder like FM you lose many things and mourning those things is rarely a “beautiful process”. It sucks. Period. I wouldn’t wish it on anyone, including my enemies. By now you’re probably thinking “Wait, she’s gone totally off topic here.” But see, I haven’t. In order for you to understand the rest of this post you first have to understand the perspective I’m speaking from. (I told you it always comes back to that need to be understood, didn’t I?) That is the reason for all the words above.
So after spending years suffering from this diagnosis I then learned how to live with it, in spite of it, because of it. I found things that I enjoy, that I am physically capable of, and I embraced them. Writing is one of those things. Unfortunately, so is smoking. Yes, I said it. I enjoy smoking. I think it’s peaceful to sit on my porch (because we don’t smoke inside my home) and watch my neighborhood as I smoke a cigarette. Next to enjoying the smoking, it’s also a coping mechanism. When I’m having a particularily brutal pain day I sometimes chain smoke. I know, it’s a horrible habit, especially when done in large amounts. Here’s the thing: what I’ve lost because of smoking has not yet outweighed what I’ve gained. It has helped me. There are days when everything hurts so badly that I’m absolutely sure I’m just a cunt hair away from completely losing my shit, or worse, giving up and letting it take over again. Most people have some experience with and understand temporary pain. Everyone’s broken a bone, bruised a knee, had a bad flu, or experienced some level of physical discomfort. These experiences are the only thing they have to relate to chronic pain with and that often times causes people to say and do dumb things. In example, saying “You’re too young to be sick” or “Hey it’ll get better” or worse, “If you just push harder you’ll be fine”. Further expansion on these faux pas will be saved for another post though. The fact remains however that these people can’t begin to understand what it’s like to live with pain; the kind of pain that never goes away, that at best will only occasionally lessen. For someone in chronic pain, these days where it lessens by any degree, are the days that we life for. In the meantime however, we (or currently I) have to find some way to get by. This is where both the smoking and caffeine drinking come into the picture for me. Smoking does nothing but hurt me physically; but mentally, it gives me a much needed break. It gives me something to do that distracts me, relaxes me, and somehow helps me better tolerate the way I feel. With chronic pain any win, however “small”, is a big fucking deal. So I take my wins where I can get them. Is it good? No. Will it help my physical condition? Absolutely not. However, if there’s one thing FM taught m e, it’s that I will rarely get to choose how I feel physically. What I can do is control how I feel mentally. So if (for now) smoking is something that helps the mental side of the batlle, I’ll take it. Sometimes you just need a hot cup of coffee and a cigarette.
Coffee does the same thing for me. Where it differs from smoking is that I do get some physical benefit from it. Along with genuinely enjoying the act of drinking and the taste of coffee, it also helps me function more like everyone else. Coffee doesn’t “hype me up” or make me “speedy” but it does help me feel like I’m actually awake and it cuts down on the effects of “Fibro Fog”. Fibro Fog is characterized by an inability to completely form well thought out, coherent thoughts or sentences. It’s like being way too stoned to the point where you can’t speak. It can vary a lot from person to person and day to day. Some days I can think and speak well, other days I have the thoughts but am incapable of properly expressing them, and on bad days I spend all day feeling like I’m not really here. It’s like watching your life on a screen, you experince it and see it but you’re not really there. I’ll try to talk to anyone and forget what I’m saying mid sentence as my mind goes completely blank. I forget things all the time. I space on things I’m supposed to do, forget what my boyfriend’s told me, and leave the house without my keys. But hey, at least I always remember to wear pants! Pants are important my dear readers. Coffee helps me focus. It makes the proverbial muddy waters of my brain just a little bit clearer. My family thinks that my caffeine intake messes my sleep up. What they don’t realize is I went 3 years without a single drop containing caffeine and I slept (or moreso didn’t) exactly the same. However, I suffered from the Fibro Fog more. The idea that coffee keeps me awake is flawed in the fact that it’s based off the assumption that I have a the same baseline for energy as everyone else and I don’t. What is normal for my loved ones is the best day for me. Having energy is the unicorn of my life; heard of, but unseen. So when I say “Coffee does not keep me up” please understand that I am a fully functioning adult who knows my own body. I cut out caffeine to see if that was my problem; it wasn’t. My body is. So this is why I drink coffee. I don’t sleep well because of the Fibro, I’m exhausted every second of the day even when I do sleep, and I have days where I can barely remember how to spell my own name. Coffee helps me function when I am awake, regardless of how I slept and it makes my mind a bit sharper. The benefits greatly outweigh the risks that really, don’t even exist in my body because my baseline is so “off” to start with. Plus, I fucking like coffee! So lay off my java, mang!
As far as my appetite, they’ve got me a little there. I do have some reasonable explanations to why I don’t eat well, such as not having an appetite when I’m in too much pain or too stressed out. But the fact remains that I’m always in pain and it turns out that you actually have to eat in order to not die. Who knew? Anyway, along with everything the FM causes I also have stomach ulcers from years and years of living in “traumatic situations” because hey, fuck me right? Some days, I know that if I eat, I will get sick and personally I’d rather not eat than taste the food again on it’s way back up. Throughout these “traumatic” years I was surrounded by people who liked to control everything I did. This led me to controlling my food intake so I felt like I had a say in one thing in my own life. That led into a full blown eating disorder. So while I do understand why my mommy is always trying to feed me and comments if I’m getting too thin, I also have grown a lot as a person since then. I am a healthy weight (116lbs. at 5’2″) and I do not engage in disordered behavior anymore. I do still have slightly disordered thinking, but I do not have an eating disorder. I am happy at the weight I’m at. I say my thinking is still disordered because I know if I ballooned to 135 I would probably stop eating until I was comfortable again. This much is true. I also know that when I’m stressed I don’t eat out of pure habit from when I did still have an active eating disorder. I know that isn’t healthy. Because again, food=sustainable life. Nonetheless, I’m not stick thin and I always eat when I’m hungry. I firmly believe that a lot of Americans eat more than they need and eat when they aren’t actually hungry, purely because it’s “lunch time”. I don’t do this. I eat when I’m hungry. It’s that simple. I never intentionally restrict my food intake. As far as the quality of what I eat, I do try to eat healthy but I also crave sugar like a junkie and don’t always have the energy to make a meal. Some days (like today) Ramen is as good as it gets. You need energy to cook; energy is a rare luxury in my life and thus, what I eat is sometimes more easy than it is healthy. But still, I do try.
So that about covers it. We all have our vices. Mine are caffeine, smoking, and sugar. Our loved ones will always show concern if these vices are unhealthy, just like mine have. My only point here is that my “vices” better the quality of my life and that is why I’ve held onto them. This is rarely true of vices and the only reason it’s true for me is because I’m in pain all the time. Every using addict thinks the drugs are helping them, but only if they ignore all the destruction they’re causing. In my case, I get true mental and emotional relief from these habits without ignoring the negative impact it does/could have. Texting and driving is inexcuseable and so it’s a behavior I worked really hard to change. Abusing drugs is horrible for you and only hurts you physically, mentally, emotionally, and spiritually; so I get clean 3 years ago. Cutting is addictive, painful to others, and literally physically harmful, so I stopped when I was 15. The only habits that have survived my constant journey to better myself and my life are the ones that help my mental wellbeing by giving me an outlet or a distraction from the body I live in and how that body makes me feel. Chronic pain is a real cunt. While smoking and drinking coffee does exacerbate FM, it helps me cope and makes me less of a cunt. That makes it worth it to me. I’m fucked physically, but the mental game is where the true struggle comes into play, and I intend to win.
Fast Facts about Fibromyalgia Learn some shit if you want 🙂
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