So, I’m off work for a bit.
Tomorrow I will head for a reputable local hospital to be given a largeish amount of ketamine. * I’ll be in all week as an inpatient.
My pain levels have been creeping up again. My specialist tells me that my nervous system is hyper-sensitised, and tried me on some new meds to attempt to dial down my brain’s pain signals.
The new meds weren’t much fun to begin with but after a few weeks I normalised them to the point that the side-effects stopped being a problem. They appear to have helped with the worst of my sharp, sparkly nerve pain, which is great. However they have not touched the vile burning energy-sapping muscular pain in the slightest. Hence next week’s ketamine infusion.
When my pain specialist offered this treatment I did what any 21st century person would do: I hopped online and researched it.
And found very little by way of information about what it is actually like, although there was promising stuff about how it can help some people to manage their chronic pain. Excellent.
Apparently a good solid dose of this disassociative medication can help some people’s brains to chill about the whole pain thing, sometimes for months at a time. It can’t cure pain forever but it can help to ease it back.
The deal appears to be that you spend several days having an IV infusion of this drug, while being monitored to make sure you don’t get too nauseous or have too many nasty hallucinations, and for some people the pain relief you get can last for a fair while, after which you can get ‘top-ups’ as an outpatient.
Also I’ve been told it will probably be a lovely holiday from pain, even if the effects don’t last for me, and even that short break may help my poor overwhelmed nervous system to calm down a bit.
Sounds even better.
Apart from this sort of information online there was a bit of stuff about ketamine’s use as an anaesthetic and painkiller, as a treatment for depression and chronic pain.
And as an illicit recreational drug as well. PLENTY of online information about that, none of which makes it look in the slightest bit attractive.
Along with many other chronic pain sufferers, I am currently taking several prescription meds that are sometimes abused by people as street drugs**, without having the faintest idea of the attraction.
I can only assume that when the medication is doing its actual work of controlling very bad pain, other effects that people find entertaining don’t actually happen. Just the pain control plus other not-so-fun things *** like vagueness, blurry vision and weird dreams.
I certainly wouldn’t seek out that sort of thing without a good reason. ****
I have noticed during chronic pain management seminars and stuff, there seems to be a sort of gentle, not-overly-judgy sense on the part of the people who work in pain medicine, that a certain number of the people in the room are probably using illicit drugs to try and manage their symptoms. This comes through in quite a lot of very convincing information about how street drugs can have bad impacts in regard to dosages, negative drug interactions, actually increasing pain, and so forth.
I don’t doubt that people do this but I personally suspect abuse of drugs by actual pain patients isn’t nearly as high as the good ol’ media likes to make out, with terrible tales of drug-seeking space cadets preying on poor innocent doctors. I was talking with a lovely fellow spoonie who, unfortunately, has had to rely on nasty things like morphine injections to function. As she pointed out, given the choice, she’d rather a life without daily severe pain to all the morphine in the world.
And given this person is not exactly the media’s view of a vagued-out perpetually-stoned drug-seeker, but in fact a naturally energetic, fit and intelligent extrovert, she is pretty good living proof that there is a necessary medical role for things like opiates, and they can actually help people live happier, more functional lives, when given under good medical care.
Anyhoo, my week to come may well be a dream come true for a recreational drug-user (although I doubt it because I suspect my dosage will be way, way lower than a drug-taker’s heart would desire) but I am mainly praying that it will be a) not unpleasant or scary, and b) give me a bit of longer-term relief.
At the moment I am functioning with around 4 hours of general effectiveness per day. A bit more when I can completely control my time and environment, less when it is busy or I am stressed or the weather hates me.
I currently miss out on so many things I’d love to let back into my life. Seeing friends and family. Going to concerts. Singing. Going out in the evenings (which I avoid currently because I get too fatigued). Anything involving sitting still for a while, including travel.
If this infusion helps to calm down my over-sensitised nervous system, I would love to re-introduce some of these things, although obviously carefully and not all at once.
Admittedly I could use any extra spoons to work longer hours, but at this point I’d prefer to restore some balance in my non-work life.
Right now my life feels like this: go to work – recover from work – go back to work – recover from work – go back to work etc. etc. I have my beloved garden and yoga but they both come under the category of Recovery From Work: Gentle Exercise/Mindfulness, rather than the category of Fun For Fun’s Sake.
As much as I enjoy and appreciate my work, it is not my entire life’s focus, and I suspect my quality of work can only increase when my social life comes into balance.
So then: a hopeful week in hospital for me. I hope the ketamine infusion works, I hope it doesn’t make me nauseous or have scary dreams, I hope I won’t be too dizzy to move, I hope the staff are nice plus any roomies I share with.
I’m especially hopeful that it might help me manage my recent strong misophonia, a condition I’ve had since childhood, which flares up when I am tense and in pain. At the moment it is tormenting me badly, triggered by sounds of people eating and general mouth sounds, sharp sounds like metal cutlery against glass or ceramic, and clicky keyboard noises. As you might imagine, these sounds are hard to avoid especially at work, and they contribute to increased pain, which in turn increases the misophonia, in a nasty cycle.
I hope that the ketamine will also give my brain a holiday from this sort of anxiety, along with the social anxiety I get in crowded places, and allow me to feel more confident when I am out of the house.
I intend to let you know what it’s all like. I have a couple of friends who are also chronic pain sufferers, and are very keen to find out what it’s all about.
From the small amount I’ve been able to find, it looks like a possibility that I could be too spacey to blog from hospital, although I will if I can.
Too spacey to blog (artist’s impression)
I’m getting myself prepared for what I hope will be a nice restful week. Yoga pants, comfy jimjams, frothy books and magazines, and just in case I can’t focus even on frothy reading, plenty of music of the peaceful, uplifting variety.
Doesn’t sound too bad so far, does it?
Watch this space …
* Or, according to an acquaintance with a much better grasp of the language of recreational drug use than I have, ‘dropping a kettie’. Also known as ‘Vitamin K’ or ‘Special K’. Um, okey-dokey then.
** Not the actual same ones I take, obviously.
*** Actually I take it back, effective pain control is totally fun and entertaining.
**** Of course, apart from pain, my life is a really pleasant, happy place. I would not presume to judge people who seek ways to escape lives that are not full of the joie de vivre with which I am blessed. *****
***** But people who abuse medications that other people need, just for kicks and larks, therefore making it really, really difficult for people to access those medications for real medical reasons? Im judging them as hard as I can.