Disabled Talk

subwayfares:

bananapeppers:

I’m writing from a chronic fatigue syndrome (myalgic encephalomyelitis, post-viral fatigue syndrome, chronic fatigue immune dysfunction syndrome) perspective…

So partysoft pointed out that our situations are really similar in a lot of ways, and I’ve gone through just about all of these meds, so I figured I’d poke my head in. tw addiction, addictive medications, medical/chronic pain stuff

My current diagnosis is migraines and/or cluster headaches that more or less don’t go away. I’ve been trying to deal with them since September and I’ve finally gotten treatment that means that, if I’m lying down with ice on my head and no stressors/triggers, I have a few symptom-free hours a day. Most of my pain is in my head, but I also have numbness & tingling on my left side & extremities, and sharp pain all over parts of my body.

So uh I’ve been on anticonvulsants (tramadol, gabapentin/neurontin) and a TCA (nortriptylene) with mixed results that are really not generalizable but that I can talk about if anyone cares. I was also on blood pressure meds (nadolol) for migraines, which are not on your list but w/e.

If you haven’t tried muscle relaxants yet, I’ve found them really effective for times when the pain is so bad that you just need to be out, or when it’s bad enough that you’re tense as all fuck and the tenseness and the pain are cycling. The one caveat is that they make me feel unbelievably vulnerable. I can’t and don’t take valium because it turns me into a weepy mess, so I take tizanidine, which is a skeletal muscle relaxant. And it makes me sleepy and floppy. Like, tripping onto my bed because muscles are hard sort of floppy. I respond really weirdly to most medications, so my reaction isn’t necessarily generalizable, but they do by definition relax your body. So if feeling safe where you are is a problem for you (which it is for me), that might be something to consider. It helps me to have a cup of tea, someone I trust around, or w/e when I’m on them, because I get nervous about my ability to keep myself safe when I’m on them.

As for opiates… yeah. Almost everything about using them for chronic pain sucks. They’re my only option (besides the muscle relaxants, which I use probably 2x/month since I stopped living with partysoft for the aforementioned reason) for acute pain relief, because basically the only thing I can take. The good thing is that hydrocodone, which is what I have, works really well for me. One of the problems I have, which I’m positive you have experienced, is that when I’ve been hurting nonstop really badly for a really long time or I’m having certain types of migraine symptoms, my emotional regulation and critical thinking skills go DOWN DOWN DOWN. The doses I take aren’t usually enough to get rid of my pain, but they bring it down to manageable levels, and the drugs tend to smooth out my emotions so that I go from being a total mess and feeling like I’m going to shake myself apart to feeling like the world is O.K. and I can cope.

And then there’re the bad things. I also have a significant family history of addiction, as do a lot of people I’m close to, so it’s really hard for me to NEED a drug that is so highly addictive and makes me feel so good. (Or even just not bad. I don’t know if you’re like me, but 80% of the time I don’t remember what feeling physically “good” is like, because a “good day” means you feel shaky and weak and nauseous and have pain but not so bad that you can’t think or do things.) Every time I take my hydrocodone, I have to go through the checklist. So, subby, are you in pain? Is it REALLY BAD pain?  Are you SURE? Is the PAIN bad enough that you should have hydrocodone, or is it just that you’re a pitiful crying BABY who can’t handle a little headache? Have you been a good enough person to deserve narcotics today? Is getting rid of this pain important enough to you that you are willing to become forever addicted to hydrocodone and/or never have it work again?

It is, honestly, really dysfunctional, and every time I do it I know it’s dysfunctional, but I’m usually in too much pain to really manage my dysfunctional thoughts by that point. Even worse are my feelings around having/not having it. Last night I went out to dinner and realized as soon as we got to the restaurant that I was in unbelievable pain and wouldn’t be able to eat or make conversation or do anything but make sad faces if I didn’t get pain relief medication. And I’d forgotten it. And my mom didn’t have hers, and there wasn’t any in the car. Then, on the way home, I realized that I had some in my jacket pocket from the last time I’d gone out, but hadn’t bothered to look. Our thought processes are less than optimal when we’re in unbearable pain, and having medication that we need to stop that pain that is also incredibly addictive is probably one of the most twisted situations we could be put in. Every time I’m crying because I hurt so badly and trying to decide if I want to make the pain go away this time, while risking all future times and there will be many, I sort of want to punch the universe in the face.

But, I was actually hoping to talk about ways to manage taking opiates for chronic pain and walking the line between torturing yourself and using them irresponsibly. This is just what I do to handle being a barely-adult who uses hydrocodone as a part of her day-to-day treatment plan.

1. I write it down every time I take it. Before I started doing this, I felt like I took it ALL THE TIME. Since, I’ve realized that I take them relatively rarely, but when I do I tend to have 1-2 bad days in a row, which makes it feel constant. It also makes it easier to make decisions when I’m really out of it. I can just look at my records and go ‘okay, so I took half a pill on the fifteenth, I’m good to go then.’ BONUS: pain logs are hilarious in retrospect. Mine is full of comments like “ow ow ow ow grouchy ow ow ow.”
2. I try not to correlate being allowed medication with being a good person, because what the hell that’s messed up. On a similar note, I’ve found that when I’m sobbing that I totally don’t need vicodin because it doesn’t even HURT that badly, just EVERYTHING IS BAD, I’m usually in so much pain the hydrocodone barely touches it.
3. I give myself more leeway when I need to function. If I’m going to hang out with my bffs, I bring my meds and take them whenever the pain is bad enough to ruin my fun. (Obviously this only works because I get IRL social time like once a year.) As far as I’m concerned, if I’m hurting too much to enjoy time with my friends, I’m missing out on something that will strengthen me when I am hurting and alone.
4. I have a sounding board. If my doctor thinks I’m doing all right when I’m honest with her, things are probably fine. I also ask my lovely girlfriend almost every time I take hydrocodone. I don’t think she’s ever said anything but “YES GOOD GOD WHY ARE YOU SO STUPID” but it makes me feel better.

Obviously ymmv, but having guidelines makes me feel better, and might be a good idea if you do go on them.

Also, I don’t know what kind of migraines you have, but there are supposed to be great anti-nausea meds in this world if that’s a problem for you. I’ve been seeing doctors about this since October and it hasn’t occurred to me to ask for them until the appointment I have in a few days, so I thought the reminder might be helpful.

This addition is also a great read, especially if you have chronic pain!