In spite of the bummer of a title (and I can’t make it chipper and perky without employing some rather extreme suspension of disbelief), this is not supposed to be a complete downer of a post. It’s more about trying to find a way to be systematic and logical while working within a fairly chaotic system.
I have quite a few friends with chronic pain issues; by comparison, I’m fairly new to this (or am I? more on that in a minute).
My “magical wizard steroids” aren’t working so well any more, and the pain is back, although not as bad as it was pre-steroid.
There are different types of pain involved, and I actually have a little private glossary with terms for different pain, and a habit of trying to pinpoint which part of my internal abdominal cavity is affected. I’m using iPeriod as a pain diary (I mean, I also use it to track periods, but there are note sections, and ways to rate pain, so I’m all about that off-label use).
I have pretty good pain tolerance, too; and humans don’t remember pain well; this is why I started keeping a pain diary (which is every bit as gloomy as it sounds, but not nearly as Marquis de Sade as it could be. I’m sure there’s some delighted S&M author writing marvellous erotica for the kinky folks and calling it “The Pain Diaries”, but forgive me if I don’t google it). I don’t trust my memories of pain.
I have one parent with a substance abuse problem, so I question every decision to take painkillers – because the only painkillers I can take are narcotics. Paracetamol does literally nothing for my intestinal pain and NSAIDS (non-steroidal anti-inflammatories: naproxen, ibuprofen, diclofenac/Voltaren) are verboten when you are suspected of having inflammatory bowel disease.
I take the painkillers; they really help (they’re not perfect; with severe pain, they get rid of… some… of it); and they do make me slightly high. They used to make me really high, and I’ll be honest: that was fun, and felt like a consolation prize – but then I started to develop a tolerance.
I am writing in this roundabout way to put off describing the problem, but let me lay it out as analytically as I can.
- I don’t want to take painkillers because they make me fuzzy and they are addictive and also I run out; which means I have to go back to the GP for a prescription; which means admitting that the treatment isn’t working; which makes me feel like a failure; which also makes me scared that the GP will think I have a substance problem (which she doesn’t, she is patient and constantly assures me that this is not something I should be worrying about right now. She is a fucking gem, I’m not even kidding). Also, they have side effects. Codeine slows down peristalsis and guys, I have a bowel problem. This isn’t great.
- To deal with the fact that I don’t want to take the painkillers, I start inventing weird rules like “I will wait at least an hour to see if the pain goes away on its own” – and sometimes this actually works. The pain isn’t constant, really. Or at least, if it doesn’t go away completely, it wanes.
- I also think a lot about “how bad is this pain? Can I work through it and tolerate it? Because if I can, I should.” This is not in a moral sense, but mostly because of (1) above. I can’t live on codeine. So I try to assess and analyse the rusty stabbing under my ribcage and the burning fiery cramps behind my navel. I try to put numbers on this. It doesn’t really work.
This system is, as you can see, a bit of a mind-fuck. I’ll run on this system for a while, and then I’ll start yearning to take painkillers – not because I’m desirous of the very mild high (although it is nice with the world the way it is running at the moment to briefly not care and not be terrified), but because I’m just tired of being in pain. I’m tired of trying to block it out and work through it, even though I can actually get away with it for a wild. I just want a fucking break from it, even though I don’t desperately need the painkillers at that point.
Here is the flipside:
- a more scientific approach to pain management is to take effective painkillers at the onset of pain, as soon as possible. This is a hell of a lot more effective than waiting until it gets bad. This is what you’re supposed to be doing, at least for short-term pain. I’m not sure what the advice is for long term pain (as a side note, when I got sent home from the hospital recently after surgery on my hand, the doctor – who doesn’t know me – wrote “take two tablets every 8 hours” on the panadeine forte prescription and I LAUGHED AND LAUGHED AND LAUGHED because my running time is “every 4-6 hours, don’t hit max dose”. Every eight hours. HAHAHAHA nope).
- Actually being in pain all the time, even when it’s just in the background, is an honest to god, bona fide mental health issue. It makes me I get bad tempered. I get frustrated. I get depressed. My creative juices dry up, my intellectual fascination shrinks to a pinpoint. I only get by focusing on the next thing and the next thing and I can’t look at the big picture or I just start crying. Also, I am not much fun to be around. I try to have a fairly tight, iron control on my temper and behaviour so I don’t make life unpleasant for the people around me, from co-workers to friends to Husband – and it’s exhausting. I sometimes just want to sit down and rant and say that it fucking sucks and I’m done with the whole mess, but I also want to stay positive… (not in a “toxic positivity culture” way, but in a “don’t give up” way).
- I actually need to take the painkillers before I work out. As a person with hypermobility syndrome, I need to do a lot of core work, and also I run. Running is known to fuck with gut function, even for people with sensible and healthy and functioning digestive tracts. Running keeps me healthy in other ways, though, and I desperately want to keep doing it. Yesterday, I forgot to take drugs before I went for my run and I basically collapsed in a heap from pain in my last running interval. I pushed through until that point, and then I just… couldn’t.
So this is where I sit. I sit stuck between “I need to tough this out” and “I need to function” and I go back and forth. Some people don’t understand why I don’t take painkillers all the freaking time; and some people don’t understand why I take them at all. I don’t know how to find normal here, or what the benchmark is. I suppose I’m writing this to try and get it all out, and hope with fingers crossed that someone else with chronic pain issues will chime in and tell their own story and how they manage it, because I don’t get it. I feel like I’m living a half-life while I get this shit sorted out, and it’s just… balls.
My apologies, gentle reader, that was a bummer of a post. I’ll write about something else next time.