Everyone seems really shocked when I say that I don’t take painkillers. Especially considering my pain levels are ridiculously high. And I have a crazy high pain threshold.
I always said that I didn’t see the point in taking them if they didn’t work.
The biggest “wow” moment during my EDS diagnosis was that opioid painkillers often don’t work for those of us with the condition. That was what made me burst into tears. Especially after years of arguing with the school nurse about how I wasn’t lying.
Vindication. Suck it, Nursie.
Anyway, I spent a really long time trying so many combinations of medication in an attempt to get my pain under control. Eventually I gave up. They didn’t work, and so I didn’t really see any point in taking something that didn’t have a positive effect on how I felt. I do want to make it clear that I’m not anti-medication like a lot of bloggers seem to be. It’s just that for me, everything I’ve ever taken has either not worked or caused side-effects that were worse than what I was living with in the first place. I think it’s really dangerous when wellness bloggers advocate for not taking any medication because the ‘body can heal itself if you just eat, drink, think the right way’ etc. But y’all know my feelings on that!
I was also pushed to go to pain management – let’s just say that it didn’t go well. CBT is NOT for me, and the woman I saw pretty much told me to expect less of myself. Which made me angry. And more depressed. Which led to me taking anti-depressants and the fun psychotic episode and subsequent PTSD that they caused. Thanks, lady.
So, for pretty much the best part of a decade (with a few attempts thrown in here and there), I’ve been painkiller free. But most definitely not pain free.
For those of you who are regular readers of my blog, you’ll know that I’m a pretty stubborn person. I have shit that I want to do and achieve in my life, and I’m trying really hard not to let my body stop me. I mean, it does, a lot. But shh.
At the moment my pain levels are spiralling out of control and I need to do something about it.
I had a phone call with my GP a month or so ago, but she was about to go on maternity leave (selfish) and wasn’t comfortable starting a drug programme for me that she wouldn’t be there to supervise. So she recommended someone else.
Yesterday I went to see him, and I was pleasantly surprised. He took my pain seriously, believed me when I said that everything we’d tried hadn’t worked, and didn’t try to fob me off with paracetamol. I’d seen him before, and it’s sad that I’m always surprised when I see a doctor that actually listens to me. It really shouldn’t be that way. Also, I happen to have a really awesome GP surgery where I live.
We talked a lot about my type of pain, what triggers it and how it affects me. We talked about my reactions to other kinds of medications and realistically what we could hope to expect.
Apparently anywhere above a 6 on a personal pain scale is unacceptable (which is funny because I feel like my 6 is probably a 2341,000 on a normal person), and that while it would be almost impossible to get rid of my pain. We could aim to get it to a 2.
He recommended that we try liquid morphine. I sat up very excitedly when I heard that. Morphine is legit. But, we have to be incredibly careful and monitor it a huge amount.
Discussions about the prevalence in people overdosing or misusing painkillers is becoming more common in the media. I’m not going to get into that here, but for people suffering from long-term chronic pain conditions, finding a way to safely manage painkillers is so incredibly important.
We’re starting me off on a super low dose (half a teaspoon every couple of hours) and then talking again on Friday to see how that went. We may adjust. The end goal is to get me onto a patch for a more controlled and long-lasting effect.
I started taking the morphine yesterday, and while I’m not sure if it had a big impact on my pain, I was in a significantly better mood and able to manage it better. Granted, I was a little bit high. But right now, that’s ok. I was high in a productive way.
My mum doesn’t trust me alone with the bottle (hysterical “I want to die” pain doesn’t really inspire all that much confidence, I understand) so she came over to my flat twice yesterday to give me my dose, and I’m currently at the house so she can keep an eye on me. We are a little bit concerned about how dose levels (if I need to go higher) and the possibility of addiction (junkie chic is so not in right now).
At the moment, I don’t know whether this is going to work, but it’s worth a try.
Wish me luck!