Warning: violent imagery. And swearing.
Quite some time ago now, I had a disturbing dream. In this dream, I was sawing my own legs off, in the certain knowledge that I would be cured by this action. Horrible, yes – but also when I woke up my only emotion was disappointment that actually, no that would not work. Bummer.
This stuck with me as actually a pretty good metaphor for how serious this illness is. It is serious. I have occasionally thought that if I really did have the choice to have normal energy levels and live with no legs in a wheelchair, I would take that choice in a heartbeat.
…the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.
… Dr William Reeves, CDC (source)
But at the moment I have a much lesser version of that choice. I’ve been trialling a new medication, Valdoxan, an antidepressant that’s supposed to help with sleep. And… I think it’s working? Not perfectly; I’ve had some bad nights, but also some much better ones, and my energy levels seem a notch higher.
There are some down sides to this drug. It’s not on the PBS so it’s a bit expensive, at $65 a month for the 25mg tabs. And if I increase from 25mg to 50mg, that would probably double. So I can wear that, I am not exactly rich but also not in dire financial straits. Anyway, I’m totally willing to put my actual money where my mouth is. I have been known to say I would shank a bitch for a good night’s sleep. (Not my usual language, I hate the misogyny of “bitch”.) Merely paying out the cash is a done deal.
The physical cost, though, is where it gets trickier. I have to have a series of half a dozen blood tests to make sure my liver is tolerating it. There may be side effects, and I think I am having some now. I did not want to look too closely at the list initially. in case of nocebo effects, but now I’m into it enough to feel more confident in my assessment.
So, the possible side effects are many and varied. The worst STOP NAO ones are liver problems, and I think I’m OK there. I did have a moment with “unexplained bruising” on my belly but then, it hasn’t recurred and maybe I did just forget bumping into something.
The most common side effect is headaches, and fuck yeah, that’s been happening. I’ve been popping the panadols. Not every day, but a lot. Further items of note in the “common” list are tiredness (how would I even notice?); sleepiness (wait, isn’t that the point?); and weight increase (not happening, I’ve been monitoring and thank FUCK for that because every other time I’ve started a new antidepressant it’s been hello to another 10-15 kilos.)
Moving on to the “uncommon” list (one in a hundred), I’ve been having a few of these. Increased pins & needles (mild); ringing in the ears (mild); pruritis (itichiness, quite a lot); confusion (or is that just poor sleep?); agitation and iritability. I’ve been mostly staying off facebook and newspaper sites because the news makes me rageflail. More than normal? Quite possibly. More than warranted, well, that’s another story.
I’ve also been coughing a lot, but although that coincides with this medication trial, it’s probably not related. It’s much more likely to do with air quality, especially small particulates like smoke, affecting my normally dormant asthma. For example, when there’s very dry air and bushfires which apparently aren’t at all related to climate change, or are they ScumMo you disgusting little coal-fondling miniTrump climate denialist muppet? Did I mention rageflailing? OK, deep calming breaths. *HACK HACK COUGH COUGHAAAAARRRGGGH*
OK then. Back to the trade offs. So far, I will trade pain and itching and money for more sleep and more energy. I am rather concerned about whether I should increase the dose as my GP suggested, mostly because of the itching. Perhaps taking some Telfast or Zyrtec will help, though it might increase the risk of other side effects. Maybe I can find something synergistic to help the sleep without increasing the dose. NSAIDs and melatonin seem the best options there. According to this Canadian drug information site, they decrease the metabolism, which means it’s in my system longer. Which might help with not being awake from 3-5 am.
My exercise physiologist reminded me of morning light to help sleep, and I’ve started trying that out too. I used to enjoy it. Ten minutes on the back deck with coffee and a book sounds like it should be a delightful way to start the day, but sadly no longer. The bright daylight is an unpleasant sensory overload, especially if I’ve slept badly. But again, I need to put my money where my mouth is. I can endure it, if it works.