I spent a busy day at work today, which is fine but a bit daunting so early in the New Year! It seemed that everyone I saw had experienced a flare-up and their immediate thought was ‘Oh no, here we go again…’.
Superficially I suppose it could look a little repetitive, but this is the magic of pain management: every person’s interpretation of their situation was different! The words might be the same, but the meaning of that pain experience is not. (Before I go through these scenario’s, remember I don’t use real names, and these patients represent ‘types’ of people rather than individuals to protect identities).
Jamie is a bit of a man’s man. He’d always been a fit man, and healthy, until he developed intermittent chest pain that really stopped him in his tracks. After thorough investigation showing no heart disease, he was diagnosed with ‘noncardiac chest pain’ – and because it was such an intermittent thing, he never knew when it was going to arrive, or what set it off.
When his pain came on yesterday, he thought ‘Oh no, here we go again’…and when I asked him what that meant, he said ‘I can’t go on holiday, and I was doing so well…’ He’d had quite a few days without any episodes of pain, and he told me he thought ‘maybe it’s gone!’. His pain meant a barrier to having fun, and he seemed to almost blame himself for ‘bringing the pain on’.
Angela is a very, very overweight woman with lots of comorbid problems like asthma, she needed a CPAP machine to help her sleep, and she had diabetes. She had a bad flare-up of pain over the Christmas break when she had a sick mother, her family all wanted to her sort out their relationship problems, and she found out the company that she had invested her retirement savings in had folded. She said to me ‘I thought to myself, oh no, here we go again when the pain started up’… and when I asked her what it meant, she said ‘With everything else going down the gurgler, I suppose it’s my fault for not looking after myself – I’d slipped up on doing what works for me, and now it’s payback time!’. Her pain meant another domino falling – and a punishment for not following her programme.
And Alec, who is a very active 65 year old, living on his own with long-term low back pain after several surgeries that have left him with neuropathic pain and some loss of motor function in his right foot, had a fall over Christmas. The fall itself wasn’t too much of a problem, but his pride was somewhat dented. He’d been following a programme to help him gradually increase his activity level, but with the fall, he’d been too worried about it happening again to return to his plan and he’d basically stopped everything. He said to me, with a bit of tear in his eyes, ‘I thought to myself, oh no, it’s happening again…’. And I asked him what he meant by this and he said ‘It’s like deja vu – back to where I started and all that way to go again before I’m as good as I was. What if I don’t get better and it ends up the first step on a slippery slope to living in a Rest Home?’. His pain meant loss of pride, loss of independence and lots of worry.
I was reminded of this truth today: The words matter a whole lot less than the meaning behind the words. Even though all three people had the same experience: a flare-up, and they had the same expression ‘Oh no, here we go again’, the pain represented something different to each one.
And that’s yet another fascinating thing about pain. We can’t experience what another person experiences when they have pain, and neither can we simply hear the words the other person says – we need to take a little time to ask what those words, what that experience, means …to be able to take the next best step with the person as they travel their own road to being well again.
The next best steps for each person were different: for Jamie it meant we worked on his automatic thoughts about his pain, and started developing a cue card that he can pull out to remind him to breathe, relax, and that it will be over soon. We also worked on recalling the positive – it had been quite a few days without any episodes, he’d handled it well, and it was soon over. It didn’t really represent a complete block to him going on holiday – and he certainly hadn’t ‘brought it on’. It’s simply the nature of intermittent noncardiac chest pain, it does come and go.
For Angela, it meant reviewing her ‘setback plan’ and going back to basics, as she put it. She’d made some ‘seemingly irrelevant decisions’ to stop doing the things she usually did to help manage her pain (such as planning her day, maintaining boundaries on other people, and keeping her exercise and relaxation programme going) – and needed to both recognise why she had done this, and also give herself some credit for coping well in a very difficult situation.
And for Alec, it meant being reassured that it is safe to return to his exercise programme, setting new goals, and working quite hard to recognise that he was at the beginning of his pain management programme, and had a lot to learn that would help him maintain his sense of safety and confidence to manage his life. He reminded himself that a single fall didn’t mean he would need to move into a Rest Home, it was something that happens to lots of people (he’d tripped on the cat!), and he could manage with the support of the team who are working with him.