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kaberett[Original post, 24th Jan, LashBlog.]
I'm choosing to repost this content here because of the terrifying news that it's been recommended that tramadol be upgraded to a Class C drug. I spent five years being routinely disbelieved by everyone about the amount of pain I was in, because I could go from "normal" to "can't speak in complete sentences" in a matter of minutes, and the only outward sign that anything had changed would be... not being able to speak in complete sentences. So I was making it up, right?
Well... no. And like I said elsewhere earlier today, in the UK it seems to be much easier to get hold of a prescription for neat codeine if you're able to rock up to your GP and say "So, I've borrowed some spares from a friend; I've been taking [dosage] and have noticed [xyz] improvements in function and quality of life. Could I have a prescription of my own?" Than if, say, you just show up and say "I've been a responsible citizen but maybe this will help?" I'm currently going through a similar phase with temazepam: I've taken 30mg this calendar year (and therefore ever), in three doses, and it's been enormously helpful. When I asked a GP for it, without disclosing I'd already tried taking it, I was told that it was awfully addictive, and that there were concerns about drug interactions. Sooner or later I'll get around to being pushier about it - and, yes, I choose that word advisedly.
Fundamentally, I consider anything that makes access to adequate pain relief harder a bad thing. Criminalising responsible drug-sharing makes access to adequate pain relief harder, and is a massive issue in terms of common behaviours among people with chronic pain that I've had this discussion with. This is not a good plan, and I'd really rather it didn't happen in my country.
If you've seen me perform with Lashings, you've almost certainly seen me take prescription medication while on stage. You've likely seen me on codeine. And here's what I can tell you for certain: you have never, ever seen me unmedicated.
Of course, I'm not the only one of us who takes meds on the regular: when my timer goes off in LashSpace I'm not the only one who reaches for tablets. But, well - it was noticeable that for the three-week Edinburgh run, the largest category by volume in my packing at the beginning of the trip was enough medication for three weeks. It's noticeable that in Lashings, as well as in my professional life, people tend to ask me for painkillers first - and that is 100% and entirely the reason that I carry ibuprofen with me at all times. (I'm continually maxing out on a different NSAID, so I can't take ibuprofen without serious health risks - but I like to be able to offer people something slightly weaker than neat opiates!)
Here's another anecdote for you: two weeks ago, I went to a GP at my surgery (never seen her before), and asked - among other things - about the possibility of sleeping pills to help with my insomnia. I was very, very careful to not request temazepam by name. She looked at the list of other things I'm taking - for the record, my daily meds are mefenamic acid, paracetamol, amitriptyline 25mg, citalopram 40mg, Buscopan, omeprazole, Fostair - sucked her teeth, and said that she didn't particularly want to prescribe it, because it can be awfully addictive, you know, and with everything else I'm on...
... and that, ladies & gents & everyone else, is when I had A Realisation.
Well, that's not quite true: it had been fermenting for a long time. But here it is: my approach to medication is not terribly common.
I'm reminded of this every time someone mentions that something is hurting, I offer them painkillers, and they demur: "Oh, no, it's not that bad," or "I'd rather wait to see if it clears up by itself," or any one of a number of other responses. It's not that I think there's anything wrong with that attitude - I used to be very, very good at it myself - but these days... well, I find it baffling (not least because ibuprofen has a rather milder side-effect profile than e.g. alcohol!).
I mean, of course, obviously - it's taught to us by the cultural expectations of a stiff upper lip, and of "musn't grumble"; by "the cure is worse than the disease"; by an ideal of self-sufficiency; and by a media that encourages us to mistrust medicine and medics, quite aside from all the people with good personal reasons to be mistrustful.
I know, intellectually, that I used to understand this at a deep and visceral level. I used to be so invested in the idea that I wasn't really in pain - that I was making it all up - that I'd skip my meds and put taking them off until I was on the floor and immobile with agony, and even then I wasn't sure I wasn't just an attention-seeker.
I know better than that these days.
These days, I know it's a lot easier to keep pain under control from the word go than it is to try to get a grip on it once it's unbearable. I know that for me, once I've started being in enough pain to notice, the vast majority of the time it's only going to get worse. And, importantly, I'm intimately familiar with drug side-effect profiles and the interaction of anything I'm asking for with everything I'm already on, and by the time I'm asking a doctor to prescribe me something I've definitely already made the cost-benefit analysis and I've probably already experimented with the drug in question. (Pro tip: people with chronic pain are often pretty relaxed about sharing meds with others they trust to act responsibly, in the general spirit of "try before you buy" and of "pay it forward".)
So I've put in all this work: on getting past my inhibitions about "making a fuss"; on researching my condition; on investigating plausible management regimes; on working out what might improve my situation.
Off I trot to the GP, and I say... "um, I'm having this problem, er, is there anything at all you might be able to do for that?" And if the GP sounds encouraging, I bimble on to "um, um, um, I've done some reading, um, it sounds like drug X might be useful? Maybe?"
Because here's the problem: I can't afford to be seen as "drug-seeking". I cannot afford the risk of doctors deciding that I don't actually need pain relief as pain relief, but what I do need is weaning off my addiction to the drugs that make my day-to-day life liveable. I can't be an effective self-advocate in medical settings in case gate-keepers decide that I'm a pushy patient - in case I seem too high-functioning, too well, to really need all those drugs.
And it was earlier this week that I worked out why this problem keeps arising.
(Before we go any further, I want to point out that my experiences as wheelchair-using crip are also my experiences as somebody who is thin, and white, and upper-middle class, and has access to medical journals and the education to make sense of the jargon, and covered by mummy's health insurance up to the age of 25. Most of the chronically ill people I interact with are either at (a) my university's Disabled Students' Campaign or (b) Diary of a Benefit Scrounger, i.e. heavily skewed towards activists; both have significant overlap with my areas of privilege. I can't - and don't - speak for all people living with chronic illnesses.)
People with chronic pain - with chronic illness - seem to me to be more likely to be very, very good at judging whether the side-effects and interactions of a new medication are worth the benefit we'll get from it. I've got so many things I need to discuss at every doctor's appointment that by the time an issue makes it to the top of the queue, I've probably been dealing with it for months. I often know what we want - but I don't have an awful lot of time to discuss it in, because I need to talk about three other things this appointment too.
But if you're well? Mmm. If you're healthy, and you're used to uncertain patients who aren't keen on taking pills... well, I can see why I'd come across as worryingly desperate. Mostly, it's because I am.
Just another thing, I suppose, to chalk up to coming from different sides of the cultural divide that is pain.
I'm choosing to repost this content here because of the terrifying news that it's been recommended that tramadol be upgraded to a Class C drug. I spent five years being routinely disbelieved by everyone about the amount of pain I was in, because I could go from "normal" to "can't speak in complete sentences" in a matter of minutes, and the only outward sign that anything had changed would be... not being able to speak in complete sentences. So I was making it up, right?
Well... no. And like I said elsewhere earlier today, in the UK it seems to be much easier to get hold of a prescription for neat codeine if you're able to rock up to your GP and say "So, I've borrowed some spares from a friend; I've been taking [dosage] and have noticed [xyz] improvements in function and quality of life. Could I have a prescription of my own?" Than if, say, you just show up and say "I've been a responsible citizen but maybe this will help?" I'm currently going through a similar phase with temazepam: I've taken 30mg this calendar year (and therefore ever), in three doses, and it's been enormously helpful. When I asked a GP for it, without disclosing I'd already tried taking it, I was told that it was awfully addictive, and that there were concerns about drug interactions. Sooner or later I'll get around to being pushier about it - and, yes, I choose that word advisedly.
Fundamentally, I consider anything that makes access to adequate pain relief harder a bad thing. Criminalising responsible drug-sharing makes access to adequate pain relief harder, and is a massive issue in terms of common behaviours among people with chronic pain that I've had this discussion with. This is not a good plan, and I'd really rather it didn't happen in my country.
If you've seen me perform with Lashings, you've almost certainly seen me take prescription medication while on stage. You've likely seen me on codeine. And here's what I can tell you for certain: you have never, ever seen me unmedicated.
Of course, I'm not the only one of us who takes meds on the regular: when my timer goes off in LashSpace I'm not the only one who reaches for tablets. But, well - it was noticeable that for the three-week Edinburgh run, the largest category by volume in my packing at the beginning of the trip was enough medication for three weeks. It's noticeable that in Lashings, as well as in my professional life, people tend to ask me for painkillers first - and that is 100% and entirely the reason that I carry ibuprofen with me at all times. (I'm continually maxing out on a different NSAID, so I can't take ibuprofen without serious health risks - but I like to be able to offer people something slightly weaker than neat opiates!)
Here's another anecdote for you: two weeks ago, I went to a GP at my surgery (never seen her before), and asked - among other things - about the possibility of sleeping pills to help with my insomnia. I was very, very careful to not request temazepam by name. She looked at the list of other things I'm taking - for the record, my daily meds are mefenamic acid, paracetamol, amitriptyline 25mg, citalopram 40mg, Buscopan, omeprazole, Fostair - sucked her teeth, and said that she didn't particularly want to prescribe it, because it can be awfully addictive, you know, and with everything else I'm on...
... and that, ladies & gents & everyone else, is when I had A Realisation.
Well, that's not quite true: it had been fermenting for a long time. But here it is: my approach to medication is not terribly common.
I'm reminded of this every time someone mentions that something is hurting, I offer them painkillers, and they demur: "Oh, no, it's not that bad," or "I'd rather wait to see if it clears up by itself," or any one of a number of other responses. It's not that I think there's anything wrong with that attitude - I used to be very, very good at it myself - but these days... well, I find it baffling (not least because ibuprofen has a rather milder side-effect profile than e.g. alcohol!).
I mean, of course, obviously - it's taught to us by the cultural expectations of a stiff upper lip, and of "musn't grumble"; by "the cure is worse than the disease"; by an ideal of self-sufficiency; and by a media that encourages us to mistrust medicine and medics, quite aside from all the people with good personal reasons to be mistrustful.
I know, intellectually, that I used to understand this at a deep and visceral level. I used to be so invested in the idea that I wasn't really in pain - that I was making it all up - that I'd skip my meds and put taking them off until I was on the floor and immobile with agony, and even then I wasn't sure I wasn't just an attention-seeker.
I know better than that these days.
These days, I know it's a lot easier to keep pain under control from the word go than it is to try to get a grip on it once it's unbearable. I know that for me, once I've started being in enough pain to notice, the vast majority of the time it's only going to get worse. And, importantly, I'm intimately familiar with drug side-effect profiles and the interaction of anything I'm asking for with everything I'm already on, and by the time I'm asking a doctor to prescribe me something I've definitely already made the cost-benefit analysis and I've probably already experimented with the drug in question. (Pro tip: people with chronic pain are often pretty relaxed about sharing meds with others they trust to act responsibly, in the general spirit of "try before you buy" and of "pay it forward".)
So I've put in all this work: on getting past my inhibitions about "making a fuss"; on researching my condition; on investigating plausible management regimes; on working out what might improve my situation.
Off I trot to the GP, and I say... "um, I'm having this problem, er, is there anything at all you might be able to do for that?" And if the GP sounds encouraging, I bimble on to "um, um, um, I've done some reading, um, it sounds like drug X might be useful? Maybe?"
Because here's the problem: I can't afford to be seen as "drug-seeking". I cannot afford the risk of doctors deciding that I don't actually need pain relief as pain relief, but what I do need is weaning off my addiction to the drugs that make my day-to-day life liveable. I can't be an effective self-advocate in medical settings in case gate-keepers decide that I'm a pushy patient - in case I seem too high-functioning, too well, to really need all those drugs.
And it was earlier this week that I worked out why this problem keeps arising.
(Before we go any further, I want to point out that my experiences as wheelchair-using crip are also my experiences as somebody who is thin, and white, and upper-middle class, and has access to medical journals and the education to make sense of the jargon, and covered by mummy's health insurance up to the age of 25. Most of the chronically ill people I interact with are either at (a) my university's Disabled Students' Campaign or (b) Diary of a Benefit Scrounger, i.e. heavily skewed towards activists; both have significant overlap with my areas of privilege. I can't - and don't - speak for all people living with chronic illnesses.)
People with chronic pain - with chronic illness - seem to me to be more likely to be very, very good at judging whether the side-effects and interactions of a new medication are worth the benefit we'll get from it. I've got so many things I need to discuss at every doctor's appointment that by the time an issue makes it to the top of the queue, I've probably been dealing with it for months. I often know what we want - but I don't have an awful lot of time to discuss it in, because I need to talk about three other things this appointment too.
But if you're well? Mmm. If you're healthy, and you're used to uncertain patients who aren't keen on taking pills... well, I can see why I'd come across as worryingly desperate. Mostly, it's because I am.
Just another thing, I suppose, to chalk up to coming from different sides of the cultural divide that is pain.
(no subject)
Date: 2013-02-22 11:18 am (UTC)I don't like to take pain killers for mild pain with obvious physical causes because the pain reminds me to avoid the cause; for instance if I hurt my foot running I need the pain to say "nope, not healed yet" rather than running on an injured foot and potentially making everything Much Much Worse. Obviously this is only going to be a useful thing to do if the cause of the pain is this sort of thing where "ignoring the pain" means "make injury worse" and "paying attention to the pain" is both bearable and short-term.
(no subject)
Date: 2013-02-22 04:31 pm (UTC)(no subject)
Date: 2013-02-22 05:20 pm (UTC)(no subject)
Date: 2013-02-22 06:26 pm (UTC)not least because ibuprofen has a rather milder side-effect profile than e.g. alcohol!).
*insert disclaimer about so long as you're not in the 5-10% of asthmatics who have aspirin sensitive asthma* :-)
Which I mention more in the spirit of "Here's an additional reason why making painkillers hard to get is really bad".
(no subject)
Date: 2013-02-23 12:26 pm (UTC)I have had conversations with people concerned about my use of codeine and it being addictive. I find that not being in pain is very addictive, yes.
(no subject)
Date: 2013-02-23 03:16 pm (UTC)*Wry smile* - well, quite!
Bizarrely, my doctors were quite happy for me to use codeine as a sleeping pill for chronic insomnia because it's less addictive and much safer than sleeping pills. I'm just not allowed to take it regularly for head pain, because it's addictive.
(Which would be much more compelling if a)they didn't ban all painkillers, decongestants, triptans, stimulants for people with chronic headaches and b)it made any difference to the intensity of pain after a few weeks of no-headache-affecting meds, which it doesn't.)
(no subject)
Date: 2013-03-09 10:14 pm (UTC)(no subject)
Date: 2013-03-09 10:16 pm (UTC)YES QUITE about not being in pain.
(no subject)
Date: 2013-02-23 01:47 pm (UTC)I think the broader point about people with chronic pain versus everybody else is definitely important, though. I'm not quite sure I have a coherent answer to the OP, just a bunch of thoughts swirling around. There is a problem with the medical system and society in general being very puritantical about pain relief and particularly about addiction; that makes things especially suck for anyone living with chronic pain. Still, I don't want doctors to cease being concerned about side-effects, drug interactions (especially when pretty much all the research ever is about pair-wise drug interactions, there's never going to be a big enough study population of people taking a specific combination of six drugs or ten drugs or whatever), and yes, addiction; being addicted, even to painkillers, does completely fuck up some people's lives.
Somebody, it might have been
I guess... I don't trust myself to be able to self-diagnose and self-prescribe. I know if I start reading through the literature I'll convince myself I have every condition I read about, or I'll pay more attention to research that shows the benefits of a treatment than the research that shows the down-sides because my desire to get the treatment will bias me. Let alone the more general problem of publication bias, where the evidence that shows a drug doesn't work or has bad side-effects never makes it in to the kind of literature I have access to, it's just shared informally and anecdotally within the medical community. I trust people with chronic pain or other chronic illnesses more than I trust me as a basically healthy person, but also there are a heck of a lot of very unscrupulous drug companies and outright quacks out there who use very sophisticated methods to prey on vulnerable, desperate people to convince them to pester their doctors for a particular treatment. If I were in pain, and I read lots of stuff on support forums for people with my condition about how a particular drug is the only thing that helps, would I be skeptical enough to think that the glowing reviews might be planted by drug companies? So on that level I kind of do want doctors to take on a gate-keeper role when it comes to prescribing.
I definitely don't want needed medicines to get tangled up in the criminal system, though. I do have some concerns about people obtaining drugs in order to sell them to desperate and not highly educated people who may be harmed by them, that happens, but that doesn't mean everyone who offers their friends prescription drugs should be treated as a drug dealer. In fact I'm not sure actual drug dealers should be treated as drug dealers, given the serious problems with society's attitude to such.
(no subject)
Date: 2013-02-23 03:00 pm (UTC)Awooga! Freudian Slip alert!
(no subject)
Date: 2013-03-09 10:13 pm (UTC)I note that true allergy (including anaphylaxis) to alcohol is A Thing, and I'm sorry for not making that clearer - I do know lots of people who can't go anywhere near NSAIDs and should have flagged that up, instead of glossing over it for the rhetoric.
I agree that being "careless" of painkillers is unwise - but I don't think that's quite what I was talking about? I am 100% behind "careful", but I do want the emphasis to shift from "addiction is awful" more toward "pain is awful".
I'm very interested that you don't trust yourself to be able to self-diagnose and self-prescribe - my attitude's very different, and I'm curious about that. I wonder whether it's because of the number of conditions I've got where I've had to go to a doctor and say "I have this" in order to access treatment? (Being trans* is the obvious one; I successfully hid serious depression from multiple doctors for well over five years until I hit the point where I decided the cost-benefit analysis had tipped over to being in favour of treatment; it took six years of escalating emphasis to get referred to an endo specialist; joint hypermobility syndrome; etc.) I don't know. I think the only thing I've ever gone "is something going wrong here" about, that turned out to be fine, is when I developed nosebleeds simultaneously with going on citalopram (which is a BIG HONKING WARNING SIGN) - it was also pretty cold.
I don't know. I don't tend to read support forums for people with my conditions (everything aimed at people with endo is, um, aimed at women); I tend to discuss papers with my consultant rather than assume they're correct (I know how much difficulty I still have spotting issues with methodology in-field, never mind out-of-field!). Again, it might be relevant that I have actually worked at GSK (admittedly only for one week!) & have relatives who work for big pharma.
I definitely agree that the kind of drug/surgical advertisement that goes on in the US is horrifying and counter-productive and unethical. I dunno.
There's a pile of disjointed thoughts! Sorry for the delay.
(no subject)
Date: 2013-03-09 10:15 pm (UTC)(no subject)
Date: 2013-03-10 09:45 am (UTC)Hence the need for side effect/risk profiles. I wasn't disagreeing with your statement about side effect profiles, just pointing out that there is a significant enough difference between the side effect difference for asthmatics vs non-asthmatics; big enough that it warrants a big warning on the box. Even then they're mostly playing it safe - by far the majority of asthmatics will be fine. And for the rest, there is still a need for safe painkillers.
In terms of mechanisms for alcohol to cause breathing trouble, I'd bet that sulphites were pretty high on the list (ok that's mostly because they put it on the bottle,but also see "red wine roulette", when the nth bottle makes most of the asthmatics at a party reach for their inhalers). Probably everything is dangerous for someone.