Yesterday I was lucky enough to get a cancellation appointment with a new specialist in pain management.
I was very keen to see somebody who really understands chronic pain, because these days persistent pain is being recognised as a whole thing in itself. Lots of new work is being done in ways to manage this pain that don’t involve option a) be on toxic painkillers forever even though they stop working after a while, or option b) ‘stiff upper lip’, have a brisk walk and buck up, haw haw.
The Captain was nice enough to come with me, because when my head is swimming in pain I often miss important stuff. Also, I have a terrible habit of being completely awed by medical practitioners. This is a bad thing because it means I am inclined to hide my real feelings, accept everything they say without question, and try to downplay my illness or pain. The Captain was there to try and make certain I didn’t.
It was an interesting consultation. The specialist really wanted to focus on my main source of pain first. This was a tricky one. My back pain is horrific and forever present, and wears me down; on the other hand my nerve and muscle pain is probably more intense but less gruelling.
I settled on my back pain, because I have never actually managed to control it, and I suspect that it is what keeps setting off the autoimmune pain.
Of course, I felt afterwards that despite the Captain’s best efforts to help, I could have communicated my pain more effectively, and been clearer about what I wanted from the consultation. I talked about feeling out of control with the pain, and being stressed about its impact on my work; what I should have added was my stress about work’s impact on me, and the fact that I was keen to develop strategies to manage the various different kinds of pain.
Anyhoo, I am returning in two weeks and he thoughtfully recommended that I write down any questions or comments that I want to bring up, so I have them ready for next time.
But it made me think about the fine art of performing pain.
This is something that I’m very bad at. It is an instinct to try and hide the worst of it and ‘show a brave face’. Of course all that does is make me grumpier, and people who care about me don’t actually get to know what is going on.
I believe it is definitely possible to move far too far in the opposite direction, and be constantly moaning and sighing and making concerned friends feel inadequate. This is one of my great fears.
It’s a fine line socially: but when it comes to medical consultations there really shouldn’t be a fine line at all.
More than once I’ve reached breaking point when a kindly medical person asks me how I am, only to get an out burst of choke-crying. * More than one stunned (and slightly damp) medical person has urged me to show my emotion to the people who should really know about it. It’s all very well my GP, of whom I am very fond, mopping up my floods of tears; but when it’s actually because of nerve pain, there’s not a lot she can do about it. Especially when I persist in sitting nicely in the neurologist’s office, calmly and modestly admitting that it’s been ‘a bit sting-ey’, and then adding anxiously that ‘it won’t slow me down’. **
I know another person who has nasty chronic pain who is a big believer in performing pain. Most people with chronic pain, she explains, learn to compartmentalise the worst of their pain, because that is the only way to make it through the day. You may be smiling on the outside, while doing your grocery shopping and filing your tax return on your iPad and doing your pelvic floor exercises, but inside you’re screeching OH GOD MAKE IT END. That’s just how it has to be, because we all have to live.
But when you get in front of that medical practitioner who has the power to help you, you only have 15 minutes in which to convince them exactly how bad it actually is, in order to get access to the good stuff (management plans, referrals, medication).
So you perform. In fact, you over-perform. You have to really put your back into it, she says, otherwise this overworked, exhausted professional in front of you who sees miserable pained people all day long, is going to understandably deliver whatever creates minimum interference and send you on your way.
This is what you tell them …
… or this is what they see.
So when this person goes in for medical appointments, she gives it her all. She may not be having the worst day, she may even be having a reasonably decent day, all things considered: but she will weep and roll on the floor if that’s what is needed to convince the person in front of her that on a bad day, weeping and rolling on the floor is precisely what happens.
This idea makes me slightly uncomfortable, butI wish that I was a fly on the wall at one of her medical appointments.
Still, even as I was yesterday calmly telling the pain specialist with a serene expression and measured voice that my pain levels were currently at 7 (they were), I could hear the voice of my GP saying as gently as she could ‘You need to go and take these tears to the specialist’s office. Here, have a twenty-seventh tissue.’
Still not sure I quite have the chops to grab this poor specialist by the lapels and shriek YOU GOTTA HELP ME MAN, but on the Captain’s advice I am starting to write down for the doctor some of the things I’ve said to the Captain about my pain.
Of course, a pain specialist sees many, many people with frightful pain, and no doubt is used to people who sit calmly in his office and say ‘Oh yes, I did black out from pain in the office yesterday – but I’m not letting it slow me down!’ and his recommendations were certainly those of somebody who took everything I said quite seriously.
Firstly he is booking me into a pain management class ***. This is a group session learning about the origins of pain, and ways in which it can be managed. I have done one before, which was useful, and this one is followed by lots of elective sessions on very useful-looking topics such as sleep, medications, work and leisure, and energy conservation.
Secondly, he is sending me for a full body bone scan to check out where I have inflammation in my body. The scan sounds AWESOME with dye injections and stuff, and I can’t wait. *****
Thirdly – and this nearly made me fling myself at his feet in gratitude – he has given me painkillers. These appear to be some of the newly-developed ones that are longer-acting, more effective, and slightly less addictive. I am only allowed on them for a few weeks until I have a plan for addressing the specific problems, but if it’s a few weeks in which I don’t feel so fragile that I cry when I see ads on telly with cute kids in them, then it’s worth any side-effects I can think of. (Nearly.)
(Sadly, speaking of side-effects, I can only take them at night for a few days, just to make sure I don’t have adverse reactions before I take them in the mornings too. And I can’t take any other painkillers. And they only seem to last 12 hours. Which means that my last dose wore off about 11 this morning and I’m hitting 8 on the richter scale about now.)
Anyway, this is one extra step down the line of being able to manage this infernal pain, by myself and hopefully for the long term.
* You know the sort: when you are trying hard to hold it back but keep making embarrassing snorty-fart noises, and you talk in hiccups: ‘I … i … it HU … URTS! Hic! Snort, wheeze.’ (Or is that just me?)
** I have to say that, you see, in case the medical community sees me as a lazy slob who doesn’t want to get better. Or even worse, that I make them feel bad because their efforts don’t seem to be working.
*** Kind of like being forced to attend compulsory anger management classes as a youthful offender. ****
**** Fibbing, I am fairly sure they are nothing like that.
***** Is there such a thing as being a medical procedure geek? If so, I am one. If not, I’m a creepy person who digs morbid anatomy stuff.