Note: I wasn’t sure where I should post it, or if I should post it at all. Ultimately, I decided it was important and needed to be shared. I didn’t want to create an entirely new piece for this, so I just threw it here since it’s more or less a continuation of what I was talking about.
Well, it’s official: Trikafta has been shown to impact people’s mental health, so much so that it has been added to the list of possible side effects. Fortunately, less than half of those taking Trikafta have experienced a dramatic increase in mental health issues, but that still means around 45% of people on this medication have experienced some pretty severe side effects associated with mental health.
Anecdotally, I’ve heard about people who have never struggled with depression or anxiety before who started having anxiety and depression symptoms almost as soon as they started taking the medication. There are also lots of people who have experienced their existing mental health issues getting worse. Many people have gotten hit so hard with these mental side effects that they’ve attempted suicide, had psychotic breaks, been just as sick on Trikafta as they were without it even though their PFTs and weight gain have improved dramatic, and more. All of which have led doctors to significantly reduce the dose of Trikafta, or take patients off it completely.
Thankfully, while I have been hit pretty hard with these mental health side effects, I’m a pretty far cry from having suicidal thoughts or going insane. But, that’s about the only good things I can think about when it comes to my mental health. Everything else sucks major ass. I have all the classic symptoms of anxiety and depression, as well as many symptoms of both that I didn’t really think were symptoms.
For instance, I often get hit with sudden waves of sadness or tiredness at random for no discernable reason, and seem to bounce from not being hungry at all, to being like a spring bear in a bakery. Some days, I wake up in the mornings without issue. Other days, I sleep through my alarm and well into the afternoon. I also get hit with sudden waves of inexplicable anxiety. I no longer seem to have major anxiety attacks like I had in January/February. However I do become extremely restless and irritable, and if there’s clutter on the kitchen counter or a stack of books on the shelf that are lopsided, I have to make things look right again before I feel better. I guess I am still having anxiety attacks, just a different type of anxiety attack that’s unlike the classic “holy shit I’m dying” anxiety attack.
Worse yet, I’ve lost a lot of interest in things that I used to be obsessed with. When I first moved to Washington, all I wanted to do was go fishing. Now, despite having all the time in the world to go fishing, and being pestered by my mom to go fishing, I don’t have the will to do it. The desire to fish is there. But, the will to pack my fishing gear in the truck and drive to the fishing pier is not there. Same goes for lots of things. Hiking, walking the dogs, going to the beach, working on my paintings, writing. You name it, I’ve either lost interest in it completely or am struggling to maintain my interest in it.
Basically, I have only the will to do basic necessities at this point. I feel pretty awful, and I’m not entirely sure where these terrible feelings are coming from. I know some of it must be biological. Every single one of my parents and grandparents and great-grandparents, have suffered from and continue to suffer from anxiety and depression. I’m sure every single generation before me in my family lineage has suffered from anxiety and depression. In a way, it’s comforting to know that my parents can empathize with my issues, although not entirely. My grandparents deal with their issues in much different ways than I do, but that’s mostly because of how they were raised. So, it’s not like I’m going through this entirely alone. But, damn, do I feel alone!
Also, like I said, it’s been confirmed that Trikafta can mess with one’s mental health in biological ways. So, there’s that.
I’m pretty sure being quarantined since early March hasn’t been good for my mental health either. I could go on and on about how old things have gotten since March, but I’m sure everyone knows how I feel about being stuck inside like a caged tiger, since they’re also stuck inside like caged tigers.
Before someone starts asking me if I’ve tried XYZ to combat depression, I really have. I’ve done pretty much everything I could think of, right down to buying an artificial sunlight lamp to use when it’s cold, dark, and raining outside. I’m medicated. I’m supplemented. I’m active. I have a routine. I take care of myself and my space. I meditate in prayer. I’ve even found that listening to Gregorian chants or piano music on Youtube while reading a good book really helps calm down my anxiety when I’m having a particularly rough time (although, listening to piano music just makes me miss playing my piano back home). But, my depression still rears its ugly head when my anxiety is absent, and vise versa. The worst is when both my anxiety and depression flare up at the same time, leaving me feeling like I’ve been hit by a pickup loaded down with cinderblocks.
I really hope my depression and anxiety will diminish once I get out of quarantine and things return to normal. However, judging by how horrible my anxiety was prior to March, I’m deeply afraid my mental health will be just as bad when I’m back to normal life. Perhaps, I will have to get off of Trikafta for awhile, or at least diminish the dose, if things don’t get much better, or God forbid, worse.
I don’t want to come off of Trikafta. It has given me my physical health. It prevented me from being absolutely decimated by pandemic-related anxiety. It has given me a second chance at life. But, a growing part of me wonders what’s the point of being on Trikafta if I’m just gonna be mentally struggling like this while on it. I know getting off Trikafta wouldn’t solve the bulk of my mental health issues, since I’ve dealt with anxiety and depression my whole life thanks to genetics and Cystic Fibrosis. But, I hate being distraught like this over things most people don’t get. People could understand having anxiety and depression due to the fact that without Trikafta, I was destined to die a horrible death in my forties. But, those same people don’t understand how I could be anything but overwhelmed with joy now that I’m expected to live as long as my peers.
My prayers have become much more desperate in recent weeks. I’m terrified of the future. I’m terrified of my mental health deteriorating. I’m terrified of being isolated from the world any longer. I’m terrified of losing friends and family to covid-19. I’m terrified of getting covid-19 myself and possibly losing all the physical progress I’ve made while on Trikafta. Yet, there’s nothing I can really do about any of that, except pray, I guess. As my prayers become more desperate, cases of covid rise, the government tightens stay-at-home restrictions, people I know and love fall sick, my depression robs me of the will to do something I previously enjoyed doing, my anxiety causes me to spend hours everyday pacing around my house and rely on medication to sleep at night. Right now, I’m in hell, as I’m sure many of us are.
However, something’s different this time. I don’t feel very far away from God. In fact, I’m closer to Him than ever before. Lately, I’ve been having very vivid dreams that seem to be responses to my prayers. I have at least a few dreams per week regarding my faith, and all of them are vivid and memorable. As someone who rarely dreams, let alone has memorable dreams, this is huge. I’ve made sure to document every one of these dreams in as much detail as possible, and have even spent some time sketching the landscapes of these dreams. Sure, I’m aware these dreams could just be the product of my unconscious mind, and not from God. However, I’m quite convinced these dreams are directly from God just due to the fact that I haven’t had dreams like these before (and yes, one of these days I’ll get around to putting these dreams together in a document and sharing them with others).
As much as it feels like I’m casting prayers into the void, I’m not. God hears every prayer I cast to Him, regardless if I speak it aloud or say it silently in my head. Whether or not He responds to my prayers, and how He responds to them, are up to Him. But, I wake up feeling fresh and comforted whenever my faith ends up being the center of a dream. At least I know God is there, and He is listening, and He cares.
In a way, knowing God is there and is listening to my prayers has helped with my mental health issues. Of course, neither prayer or seemingly getting a response to those prayers cure my mental health issues, or even put a dent in them. But, there is lots of comfort to take in the fact that God is there, and He cares about us, and hears our prayers.
