If you follow me on Instagram or TikTok, you are probably well aware that I have decided to start documenting my journey as I try to navigate my sleep disorder, Idiopathic Hypersomnia. If you want to get up to date you can check out the highlights on my Instagram #IH and #sleepingbeauty.
I am feeling super overwhelmed right now. It's day seven back on Nuvigil, and if you have been following along, you know things were off to a great start. Like, I really couldn't have asked for a better start in terms of effectiveness after taking some time off of it. As usual however, it starts to taper. And it seems like with each time I do a "restart", it starts to taper sooner.
It's a really frustrating feeling. I am very tired right now and all I want to do is nap, but I can't because the medicine is keeping me awake, (which it's supposed to do). But I don't have the energy to even do what I want to even with being awake. But being awake makes me feel like I should. It's really a viscous emotional cycle whenever I get to this "shift" when taking Nuvigil. It starts off really strong and very quickly dips out. It's like giving me a taste of what I feel like I should feel like all the time to only rip it away shortly after.
It's a good and bad thing. It's good because even though it's only a few days, it reminds me of how capable I actually am. It reminds me that I am not a lazy person and that I am not naturally withdrawn. It's because I have a disability that I can't always function at full capacity. So it's comforting in that way, reminding me of who I am and giving me hope... but at the same time it makes it that much harder when that feeling and that energy disappears.
I'm not gonna lie to you, today is a pretty depressing day. It's hard not to wonder what the point of even discovering what I am capable of doing at normal capacity or "who I really am" as a person, if the percentage of time that I actually get to spend being that person is so small. It's a fight between accepting things as they are with my disorder and learning who I am and how to be with it and trying to fight it and find ways to not have it affect me so much to be that person that I know I would be capable of being. I don't know what the better mindset is. Either way, they are always at odds, and on days like today, where there is a shift and it becomes clear that the Nuvigil has already stopped working at its best, those feelings are even more ampliphied.
So what happens now? Well, usually at this point I go through a short phase of being super depressed... because I have just come off of high hopes from some really solid, good, productive, energetic, days. Within those "golden" days my mind flourishes, I accomplish a lot, I make plans, I have ideas, and I have a solid strategy of how I want to do things in life. Then today hits, and I know that Nuvigil, while helpful, is no magic pill. It's going to keep me from sleeping as long during the day, but ultimately it will not help in giving me the energy I need or overtake the insatiable need I have to sleep. I fight to try to keep up the momentum with the plans, ideas, and everything that has happened in the "golden" days, just a few days before. But the fatigue takes over. I can't think like I could before. I'm tired, but now I can't nap. So I end up just sitting in my bed, wondering what I'm doing and feeling overwhelmed as I fight with myself to push through but come out defeated.
I'm getting this all down mainly for documentation for myself. I mean it is to spread "awareness" too and it's just helpful for me mentally for whatever reason to get it out there, but I'm not writing this to gain a bunch of sympathy. This phase will eventually pass. The overwhelming feelings of depression and anxiety will lessen, and I will continue on. I'll keep meeting with my Neurologist, I'll keep researching, and all along the way continue to hope and pray for a miracle.
My boyfriend suggested I document how I'm feeling today on Instagram like I had been the last few days, but I told him I was too depressed. He said that it may be even more important to document because of that, and I know he's right. But doing a blog post seemed a lot easier, and honestly it's proving to be kind of cathartic.
This post probably has a lot of typos and I don't even know if it's going to make sense, but I am far too tired to go back and read what I just wrote haha, so whatever I have just put down is here to stay. Before I finish up this post, I did want to mention a few other things, just for documentation sake. I haven't been feeling super great the last few days. I think that could have contributed to how I'm feeling as well, so maybe the medicine will prove to work more effectively later if I am getting over something. It's hard to know though. What came first I mean. Because Nuvigil does come with side effects. I also got my COVID vaccine last week so I don't know if that plays into anything. But I've had really bad heartburn the last couple of evenings, which is super unusual for me. I have been having chest pain, which I know is a side effect. My throat has felt like it wants to be soar for the last like week too, but hasn't gotten there and because my apatite has been super weird. Who knows... I just hope I'm not getting sick.
Anyways, It's been a really hard day mentally... but I still have so much hope. Thanks again for reading, listening, and caring.