Learning how to cope with chronic illness has been filled with challenges. Since my fibromyalgia and chronic fatigue diagnoses are only a few months old, I’m still in the beginning stages of figuring out how my body works, how to live within my new limitations, and how to manage and improve my pain and fatigue levels. I’m also still in the midst of processing all of the emotions, thoughts, and anxieties that come with this transition.
So far, this whole process has been completely unexpected, but one of the things that has struck me the most is how isolating chronic pain is. I knew that emotional pain could be lonely like that, but I hadn’t considered that consistent physical pain could have a similar effect. Now I’ll be honest, I’ve realized I’m not as good at being vulnerable as I thought I was, but even when I’ve tried really hard to be truthful with the people closest to me, I’ve discovered that it’s incredibly difficult to sufficiently explain what I’m going through. I think this is partly due to the fact that no one outside of my family sees me at my worst. But I also think that pain is inherently isolating. No matter how empathic and kind someone is, they can’t feel your pain with you. Which kind of sucks. Not that I wish my pain on anyone else, but isolation is probably my very least favorite feeling in the universe.
Tonight I spent about four hours laying in bed, feeling sick from pain. For almost two of those hours the pain was so intense that I couldn’t even watch Netflix, so I just lay in bed and cried. So I thought now might be a good time to try to write about my pain (because it’s still fresh or something? I don’t know, I might just be tired and making weird choices). To preface this let me first say that my pain levels vary a lot. To be honest, I am not sure if there are ever times where I’m both conscious and 100% pain-free anymore. I think my threshold for what registers as pain may simply have gotten higher over the pain few months. Second, since chronic pain is such a difficult thing to describe I’m going to try to use sound as a metaphor to talk about my varying pain levels, since most people I know can relate to what it’s like to notice sound.
Level 4: rock concert.
On a really bad day, when I’m having a flare, or worst of the worst, having a flare combined with sickness or pms, the pain is so loud I can’t concentrate. It’s like being at a loud concert with a friend, and they’re trying to tell you something, but even when they put their mouth two inches from your ear and yell you can just barely understand them. Except in this metaphor my friend is my own thoughts. When the pain is really loud I can barely think rationally, my mind can scream and panic, but it’s hard for me to have a calm conversation with it over all the noise. My legs will feel like I have walked 20 miles that day; they burn, they cramp, they twitch. It feels like my legs are sick, even though I’m technically healthy. My back will feel like someone has beaten it with a metal bat or reached into my skin and pinched my nerves and muscles until they’re bruised. My hips will feel like what I imagine your hips feel like after you give birth, like bones and muscles have been wrenched apart. Add to this oversensitivity to temperature, texture, light, and sound–and maybe a headache and/or nausea– and you’ve got a very bad day.
Level 3: secondhand tunes.
At times when my pain is noticeable, but I can still carry a conversation or even get a little work done the pain is like when someone is listening to music just a little too loud while you’re trying to read in the same room. It’s distracting and annoying, but you can manage for a while before you either have to leave the room or ask them to turn down the volume. Except that with pain neither of these is an option, so after a while I have to just stop trying to do whatever it is I am doing and instead watch Jim and Pam’s wedding episode of The Office on Netflix for the 527th time.
Level 2: ambiance.
Much of the time my pain is kind of like when you go out to eat at a restaurant that plays background music in the dining area (sometimes just a bit louder than you’d prefer). You can still concentrate on your meal and the conversations you’re having with your friends or family for the most part, but every few minutes the music crescendos or a lyric stands out and it distracts you for a moment. You might lose your train of thought for a moment, but soon enough you can reenter the conversation and the music once again ceases to be the center of your attention. However you still know it’s there, even if you’re not focusing on it. On these days I can do 3-4 hours of work, school, or other not highly physical activity before I need to rest and do something where I can sit comfortably and don’t need to concentrate too hard.
Level 1: fly on the wall.
On a good day my pain is like when a fly gets trapped in my room after I’ve left the windows open in the summer. Mostly there’s a faint buzzing that I can hear, but it doesn’t really bother me. However, every so often the fly will zoom right past my ear, or bump up against the window, which causes me short moments of irritation and annoyance. On these days I have to pay very closel attention to my body. I can do 4 hours of work or school AND I can do some light exercise AND I can have meaningful interactions with friends or family. Which is exciting! On these days I feel allllmost normal-ish. If people ask how I’m doing I’m likely to say, “I mostly just feel kinda tired.” Which is a vast improvement from a bad, rock concert volume pain day. But I have to be careful that my excitement over being able to function more normally doesn’t cause me to overexert myself, because that could quickly land me back in the bad day zone.
Obviously, this explanation doesn’t cover the whole spectrum of my experience. For one thing, there are degrees between each of the levels I’ve described. Plus, my levels might change as I learn to what works for me and what doesn’t. But this is where I’m at right now, and what I’ve experienced over the past 3 months. I’m still struggling to understand what I’m going through and to find helpful ways for me to think about it. I know that my worst days are some people’s good days, but I also know that my good days are still harder than my normal days used to be. I’m working hard to remind myself that I don’t have to be grateful that things aren’t worse. I’m allowed to mourn my loss of energy and comfort, because it really sucks to lose those things. And I’m allowed to still be in process, but I want to be taking steps to help myself in whatever ways I can. Which includes combating isolation with vulnerability, and hoping that the words I’ve chosen in writing this will be on my side in the fight to connect with people through the pain.