Throughout the last three years and nine months, I’ve met a lot of people through the internet who live with chronic pain and illness. Some of these people I keep in touch with regularly, while others I merely cross paths with for a short time. Many of the people I’ve met are bedridden, or have had their lives impacted in a large way by their pain. Hell, all of us have been impacted, but I’m talking about the people who can hardly get out of bed, who no longer go to work or do the things they used to love and do.

My heart goes out to these people. I truly feel for them, and I hope that they get better. I hope that they can return to the things they love. But me? I’m not going to allow that to happen to me. Call it stubbornness, or naivety, or whatever you want, but I refuse to let this fuck up my life. And don’t get me wrong — I don’t believe that most people allowed themselves to become bedridden. Some diseases are very vicious and degenerating. Do I think that some people gave up and allowed their illness to take over their lives? Yes, and that’s heartbreaking, because it’s one more thing that their illness has taken away from them: hope. I want to keep on hoping, to keep on living the way I’ve been living.

But fuck me, some days all I want to do is lay in bed and get on the Tramadol train. One day, I did just that. I hadn’t gotten up to take anything yet, but I did lay in bed. When Mike called to see if I still wanted to go out to breakfast, I told him no, that I was in too much pain. He came over anyway, and laid down with me for a while, soothing me and coaxing me to come out with him. I was still in pain while we ate, but I felt a lot better than I did when I just lay there. (Don’t get me wrong — there are many times when your body needs rest. But there is a difference between giving in to the depression and giving your body a break.)

Then there was the day I completely overexerted myself, resulting in spending the next three or four days limping and wincing with each “step.” Unfortunately — or maybe it was fortunate, depending on how you look at it — I was out of state, at a comic convention, and my bed was miles and miles away. I was having a really good time aside from the pain, and made the best of it. (The walk back to Grand Central, though? Fucking sucked.)

Since my pain can be my most debilitating symptom on a bad day, I’ve had to learn some coping methods. Prior to the onset of my mystery illness, my coping methods for stress, anxiety, and depression were cutting (during high school) and smoking (since high school). I’ve also had to learn to be gentle to myself. (Lately, I am relearning this; I tend to be hard on myself when I’m in pain at times, telling myself I’m being a baby.) If you’re like me and react oddly to prescription medication, the trial and error of finding “the one” can be a bitch (or your own private version of Woodstock, depending). Here is what I’ve been doing to get through my bad pain days:

• Take Extra Strength Tylenol for mild pain. I’ve mentioned before that I have a ginormous bottle of Costco’s version of Extra Strength Tylenol. It’s cheap — two 500-count bottles cost $5 at Costco — and I honestly feel like it works better than the actual Tylenol brand.
• Take Tramadol for severe pain. Because of how high it gets me, I reserve the Tramadol for when the pain gets so bad that it’s all I can think about. Usually I wait until bedtime, because as I’ve said many, many times, once it kicks in, I’m about as useful as your favorite pothead in high school. (I giggle. A lot. I’m good only for watching movies or TV, although I am capable of walking around and taking care of myself; I’d just rather sit on my ass and be high. [I would never drive while on it, though.])
• Try to ignore it. Seriously. Sometimes, the best thing I can do is figuratively block my ears and sing, “La la la la la, I can’t hear you.” Sometimes, I even say, “Fuck off,” or “Stop,” out loud. This works well for twinges. It doesn’t work so well for severe pain.
• Distract myself. Reading a book, or playing a game on the DS works perfectly for this. My DS especially comes in handy when it’s 3am, everyone else is asleep, and I’m in bed wide awake because Tramadol hasn’t kicked in yet and my joints are angry little demons. Anyone with chronic illness should invest in a DS, though, because they are a lifesaver for doctors’ waiting rooms.
• Be good to myself. As crazy as it sounds, I will sometimes soothe myself, as if I were a child with a fever and that child’s parent. I’ll rub the spot where it hurts, tell myself I’m okay, and wrap myself in love. I’ve even told myself I was sorry a few times. That kind of TLC feels really good when I’m alone and there’s no one else to soothe me.
• Verbalize it. There is a huge difference between complaining for attention and verbalizing that something is wrong. Healthy complaining is a good thing. Sometimes I’ll tweet it, but usually I’ll just say it out loud to myself or to someone else, if I’m with someone. For example: Yesterday, while doing dishes, the muscles in my left arm kept getting achy. I haven’t had muscle aching in a really long time, so it was pretty weird. I tried to ignore it, but while I was picking out clothes, it continued, so I said something to my mom about it. Verbalizing it helped take it off of my shoulders. When you live with any kind of chronic illness, it’s very important to get some of that proverbial weight off of your shoulders. Many people blog, see therapists, keep a journal, and/or talk to loved ones.
• Breathe. Sometimes, it can all feel unbearable. I often forget to stop, breathe, and soothe myself, but when I do remember, it makes a world of difference.
• Create. I’m a born writer, meaning that I best express myself in the written word. (I’m no Stephen King.) If I’m not quite in the mood for verbalization, losing myself in a story that I’m writing can help to get everything off of my mind. Other people with chronic pain do things like craft, knit, paint, scrapbook, sew, and other things to cope. Aside from writing, I enjoy embroidering, even though I haven’t done it in a while; it’s physically easy and a lot of fun.
• Take care of myself. Chronic pain and illness can take a huge toll on your self-esteem. I already have depression, so sometimes I’m twice as susceptible to a downward spiral. I often find myself thinking, What’s wrong with me? Why me? What did I do to deserve this? Where did I go wrong that I ended up here? Will I ever find out what’s going on? Being inquisitive and refusing to give up on an answer is one thing, but when I’m being negative, it’s a completely different story. Recently I’ve discovered that “prettying up” every day helps boost my self-esteem. Is that vain? Maybe. Do I care? Not at all. When I feel good about myself, even if it’s just about the way I did my hair and makeup and put together my outfit, I feel a lot better on every level.
• Rest. If I don’t get enough sleep, I am very vulnerable to a bad pain day. I don’t know why, but I’ve heard other people with chronic pain and illness say the same thing. I’m lucky enough to work from home, so I don’t have to be up super early to go to work. I can literally sleep in until I’m rested, roll out of bed, do my work, and take it easy if I need to. I can also take as many breaks as I need. When I used to have a part-time job, it was a little more difficult to get the rest I needed, especially since I’m biologically wired to be up half the night; getting up early was no picnic. I eventually changed my schedule so that I went in for noon instead of 9am, and this helped a lot. Knowing my body and working with my body definitely helps. However, I cyclically have week-long periods of time when I don’t sleep well at all. I have a feeling this is another symptom of my beloved Mystery Autoimmune Disease. During these periods of time, I can be dead tired but my body just won’t allow me to rest. It sounds crazy, right? It is. I actually just went through one of these periods. Poor Mike just told me last night that I’ve been really cranky lately. I didn’t realize it at all! I confessed that I’d been having trouble sleeping, and apologized. Last night I finally got a good night’s rest (fortunately for me, and fortunately for my poor family).
• Drink plenty of fluids. I honestly don’t know if this helps with pain, but you’re supposed to, anyway, and it can’t hurt. I drink a lot of fluids anyway, since I have the perpetual thirst, thanks to whatever-the-fuck-is-wrong-with-me.

What are your coping methods for your chronic pain? Leave a comment and share, please!