Prednisone is a commonly used medication in cystic fibrosis. The pill is about half the size of a fingernail. It is a “corticosteroid” (not the kind of steroids baseball players use to hit home runs), that we use at different doses in different scenarios. It primarily serves as an anti-inflammatory by telling the immune system to chill the f*ck out. It’s one of those meds that’s used for like a billion different things.
I’d be willing to bet that if you’ve ever been sick (with or without CF), you’ve probably taken some dose of prednisone at some point in your life.
I’m one of those CF patients that takes it daily at a very low dose. Simply put, I’m inflamed as fucccc.
Like any good medication, though, prednisone comes with a slew of side effects, none more fun to deal with than the very unpleasant mood swings.
If you’ve ever heard the term “roid-rage” this is pretty much where it comes from.
I can tell you (subjectively, of course), that these mood swings are, well, horrendous. At times, I find that these mood swings can actually be quite debilitating, especially as I have gotten older for whatever reason.
It’s hard to put into words what it feels like, and, I think, for that reason I’ve struggled to write this exact blog post – one that I’ve wanted to write for a while.
It’s almost like I’m just sitting there and then a tidal wave crashes into me. I find myself suddenly overcome with a number of different emotions depending on the exact moment. Sometimes I fill with rage, other times it’s anxiety, and sometimes it’s brain fog or something else. It’s very unnatural.
It’s incredibly frustrating when it happens to me because I am just suddenly consumed by whatever feeling that has fallen over me. Put another way, it’s not a pleasant sensation to be fraught with rage over something as small as a typo, or an app not loading on my phone.
More recently I’ve pretty much discovered that these things have happened to me simply because it’s a side effect of the medication that is helping me so dearly. I am constantly reminding myself that I am, in fact, dealing with a double edge sword in a lot of aspects of care.
How can one balance the risks and benefits of every medication thrown our way in chronic illness? More often than not something that is working to preserve life is also making it more difficult.
Look at something as simple as Tylenol, for example. That medication just eats away at our livers, but we are so quick to take it because we know the relief it can give to us. I think it’s really just another piece of the miracle of science.
We’ve figured out (or at least have begun to figure out relative to the course of humanity) how to push our bodies to limit and go beyond.
Prednisone is one of those things that I know is making a huge difference in my life to the point where I can objectively feel like I need more anti-inflammatory support, or if I’m overdoing it.
To that, the brainiac’s will say I’m experiencing a placebo effect, or some sort of dangerous misunderstanding, but I really do think when one lives with such severe chronic illness, he finds a sense of singularity with his body.
It does not take a lot of effort on my part to tell when something is amiss. The smallest changes in the state of my anatomy create huge differences in my day-to-day life – good and bad.
Prednisone is altering my body’s natural state (which ironically is attempting to shut down), in such a way that it makes life easier, but also makes my head spin in circles.
It works on it’s own timeline. I could be in the middle of an amazing moment and then get hit with a nuclear warhead filled with emotion.
I think I do a decent job of compartmentalizing these emotions. Personally I never like to indicate to the outside world that I’m in some sort of distress, because I know I’ve figured out how to cope. I also don’t love burdening other people with my BS. Everyone has enough shit to deal with.
Recently I’ve worked on some coping mechanisms at the advice of my clinic’s social worker (that is… coping with general CF stress, not just prednisone related mood swings), and I think that having a concrete plan in place has been invaluable.
Sometimes the answer is to step away from everything. Disconnect and walk away from whatever it is that I’m doing. That’s really been pretty effective, but my go to is video games. If you’ve ever been to one of my talks, you know that this has long been a coping strategy that I’ve only recently identified. I unplug and jump into the virtual world. It’s easy, and, I think, a great place to redistribute some rage, or whatever other emotion I’m dealing with.
Reading is another big one for me (follow me on GoodReads!). I love to read stories about great people doing great things. Feeling like I can get into the mind of a great person is a very liberating experience.
In the end, though, I think it really comes down to understanding the pros and cons of all the medications that we need to survive. I understand the amazing benefits offered to me by prednisone, and I know that the chemistry involved in keeping me alive is beyond complex. To that end, I’m happy to live uncomfortably, albeit for a few hours here or there, in exchange for a chance to live long and successfully.