I haven’t written about chronic pain stuff in a while. Part of that is because my symptoms haven’t been too bad (knock on wood), and part of it is I don’t like complaining. Stupid, stubborn, and stoic, maybe, but there it is. That said, this was intended to be a short “Dammit self” kind of post on Tumblr, and then it kind of exploded, so I decided to post it here and let it cross-post to Tumblr and Twitter.
If it makes even one person out there feel like they’re understood, or at the very least, not alone, it was worth writing. Even if not… Well, at least I vented. Cue angsting. A little. Maybe.
For those who don’t know, hi, my name is Murphy, and I have chronic pain issues. Tonight I started feeling the warning signs of an impending flare-up: my fingers and toes went numb and then turned blue, then purple. I started shivering uncontrollably. Random spots in my back and knees started to ache, which made moving difficult, and the headache I’d already taken extra strength Tylenol for came back.
This usually means that I’m in for an unspecified time period of pain and bone-deep fatigue, often with chills I can’t chase, tingling and/or numbness in the joints that are already hurting, and a headache (sometimes migraine!). For a while, and I never know how long it’ll be, my symptoms are worse, awful even. To say it’s not fun is a bit of an understatement.
After almost 9 years of symptoms I’ve gotten more or less used to dealing with this. I turned up the heat all over the apartment, ran a hot bath loaded with Epsom salts and soaked until I thought I could move again, then bundled up: slippers, PJ pants, T-shirt, hoodie, fleece bathrobe…. and huddled on the couch under a blanket, just for good measure.
I was texting the girl I’ve recently started dating when I noticed the blue fingers, and commented on it, so when she asked if I was cold, I had to explain. After I’d detailed how bundled up I was, she was worried I’d overheat, so I assured her that I was shedding layers as I warmed up. When I said I was heading to bed, I tried to stop myself, I swear I did, and yet, I still said it: I told her I’d see her tomorrow, as we’d already planned…. unless she’d decided to run for the hills, “haha.”
I do this every time I have to explain to someone what “chronic pain” involves for me; every time they first encounter what I deal with on “bad” days as opposed to “good” ones. There was no real reason to do this here; this is a girl who’s known (and lost) someone with cystic fibrosis, so it’s not as if the concept of a young person with a chronic illness is totally foreign to her. I told myself this, multiple times, while writing up that last message, and while gritting my teeth and trying to convince myself to erase that last little comment. I reminded myself that jokes at my own expense are only funny if they don’t make me feel pathetic/disgusting/broken. I tried to convince myself that she’s a good person, that she meant it when she said she understood (or that she’ll be willing to try to understand, especially if things go further), that I didn’t need to send that damn self-deprecating message.
I sent the message anyways. Then spent a few minutes telling myself that my reply was late and all her lack of response means is that she probably fell asleep, not that she’s uncomfortable and preparing to pull a disappearing act.
And then it switched to wondering why I do this–why, despite knowing there’s no reason for it, despite knowing I’ll hate myself for saying it, despite knowing I’m still a person no matter what this bloody condition (and what an accurate word–sure, you can do this fun activity, on the condition that you spend the next two days in bed recovering; sure, you can eat this food, on the condition that you accept that it’ll make you ill…) may do to me, why I always apologise for myself…. and for something I can’t control. Why do I put myself down? Why do I make a joke that isn’t really a joke at all? Why do I work up the nerve to speak honestly about what’s happening and immediately turn around and downplay it?
Is it because I’m young and seemingly healthy and don’t feel like I have the right to be anything but? Maybe a little, but that’s not all of it.
Is it because I want to brush off the symptoms I just described (because really, what sounds awful to the able-bodied and athletic is a day ending in Y for me) and avoid worrying people, and humour (however grim) is the best way I know to do that? Hmm, still not quite there.
What if it’s because of the family members who wouldn’t believe it, the healthy people–friends, family members, partners–who say I’m making it up without actually saying it (thank you, I hadn’t already doubted the credibility of my own experiences enough), the ones I can’t tell because it would turn into a battle of “I’ve lived longer and I’m sure I’ve experienced worse,” the ones who just ignore it and pretend it isn’t a thing? What if it’s because other people I thought I mattered to have run for the hills, or worse, stayed even though they didn’t want to, when they had no clue what to do when I did flare up, or how to process being close to someone whose body likes to randomly hurt, all the fucking time and never even asked so that I could try to help them understand? So that maybe they wouldn’t look at me with this expression between pity and disgust?
I’m not saying a lot of people have stopped being a part of my life specifically because of this chronic pain condition. I wouldn’t even say most of the people I’ve been close to who ended up as a former part of my life, whether they left quietly or dramatically, blamed that. I’m lucky that way, and I know it. A lot of people have stuck with me, even when it meant taking my dog out for me because I was hurting so badly that the thought of getting up, walking down a flight of stairs, wandering around the yard, and coming back made me want to cry. Or when it meant hearing “I have a headache” one minute and walking out of the bathroom less than five minutes later to find me crouched on the kitchen floor, clutching my head because it hurt. There’s been acceptance and I can’t deny it: No complaints when I’m forced to cancel plans. The tacit understanding that comes from giving me a hot/cold clay pack for Christmas. Never once looking at me suspiciously, with an expression that says “Are you really hurting as much as you say you are?” Never hesitating before offering comfort when I need it. Never questioning the fact that sometimes, I need help with things that should be easy, and never getting mad at me when I sometimes mope and wallow in a sad, blue, hopeless mood for days at a time, because I remember what it was like to feel like I could do whatever I wanted and I wish I could feel that way again, and I know I can’t and sometimes I can’t help being sad about it.
Not everybody left, and those who did didn’t necessarily leave for that reason, but that’s not the point. As grateful as I am for those who understand and accept it, for those who stay, somebody didn’t understand and somebody did leave. Maybe they were even ashamed of how they left, of how long it took them to say they were leaving when I’d felt them leaving for months before they finally said it. I don’t know.
Somebody left, and this thing I can’t control was a big part of the reason for it. Getting close to someone new, after someone left, and hoping they won’t leave too, is hard, because no matter how many stay, it’s really fucking hard to forget the ones who didn’t, or couldn’t, or worst of all, wouldn’t.