When most people who’ve dealt with PANDAS or PANS think about being out of control, what probably comes to mind are episodes of rage, debilitating OCD, constant tics, and panic attacks. While these things are the most characteristic of the disorder, during the last few weeks, I’ve been finding that sometimes, you can be out-of-control and look totally fine on the outside.
Right now, it feels as though all of my thoughts are swarming around me, and I try to catch them, but they manage to slip out of my hands before I can put them back into the cage of my head. Just as I’ve grabbed one thought, as soon as I try to reach for another, the first one slips out. I forget things quickly. I don’t pay attention. I get nothing done. I end up feeling frantic and restless, yet I can’t actually do anything productive with all of this unfocused energy.
But what makes me feel the most out-of-control is that there’s a puppeteer in my head that makes me do things I don’t really want to do. It makes me read pointless articles on the Internet when I want to be reading my textbooks. It makes me sit on the floor and stare at nothing instead of getting into bed when I’m ready to sleep. It makes me bike all the way across town to areas I don’t know when I only need to bike to the college library. And it’s impossible to extricate myself from the puppeteer’s control.
Lately, it has me doing something even more disturbing: binge eating.
I think about food a lot, and often, I start eating when I’m not even hungry. And then I can’t stop. I just stand in the kitchen eating and eating, knowing exactly what’s going on, but feeling powerless to do anything else. When I’m finally done, I feel bad about it, and I’m tormented with the idea that I’m going to get fat. I think about fasting to make up for it (but I never actually do it). I think about how long I will have to work out to burn it off. I “check myself” in the mirror every time I walk by, which I know is ridiculous, but it sometimes makes me feel better for a moment.
So far, I’m still below the weight I was before I had an intense period of restricted eating in the summer of 2014. I tell myself that as long as I keep running and working out, it will be fine. But I know I’m not fine…
I’m not heading in a good direction. I’m beyond frustrated with my out-of-control mind, and I’m frightened by my out-of-control actions.
In desperation during midterms the other week, I restarted taking Provigil (with my doctor’s approval) to maybe have something that remotely resembled an ability to focus and get some work done. For a week, it worked beautifully, but now, I’m feeling unfocused and out-of-control all over again. Even worse, my depression has come back despite temporarily stopping my Prednisone taper—which my doctor suspected was causing it a couple weeks ago.
I’m beginning to question everything all over again… Am I really in remission? Am I getting worse? Am I feeling this way because my classmate just had Strep? Could this be related to the Prednisone taper? Is any of it part of the PTSD?
For now, I have no answers. I’m going back to the psychiatrist this week, though, so maybe he can help get me through this rough patch…
I’m better than I was last semester or a year ago. I do have good days where I have concentration and control. I’ve even had quite a few days where I’m not depressed, either. But one thing is certain: I’m still fighting PANS. And whatever it takes, I have to find a way to put my thoughts back into my head and free myself from the puppeteer.
4 thoughts on “Quietly Out of Control”
One thing for sure is you’re a fighter and I know you will get back to good health. It seems to be a bit of a three steps forward two steps back kind of thing going on for you, but as you point out, you are still better off than you were last semester. You will beat this! Keeping you in my thoughts!
Thanks, Janet. You’re so right about this being a three steps forward, two steps back process. I have to keep reminding myself of that. Thanks for the thoughts!
Take a deep breath……exhale. I feel compelled to comment. I do not have PANDAS. I am the mom of a child with possible PANS. That being said, I want you to know that A LOT of people, PANDAS or not, get stuck on those exact same behaviors you listed. I surf useless Facebook posts when I should be doing other things. Eat without self control – welcome to 75% of the population. Mastering self control is a life long struggle for so many people. I don’t want you to be so hard on yourself or over analyze this. You are still early in the healing process. This new way of life is still new to you. Also, at your age, everyone starts to question themselves and life. Who am I? Where am I going in life? What do I want to be? All normal. I want you to at least consider that you are normal. Tell yourself daily that PANDAS is behind you and you are done with it. Your body will listen. You may have other challenges, but PANDAS is done. Gone. Commit to leaving it in the past. Everyone has issues – everyone! It’s all part of this thing called life. You are so deeply introspective, and this is really a good trait. But it can get you into trouble too. I have probably 20+ years of experience on you and trust me when I say that these things your going through are not unusual. Take good care of your body and mind – get enough sleep, eat healthy, whole foods, get outside in the sunshine and tell yourself that you are going to move forward with hope! You can do this!
Thanks for such a thoughtful comment, Noelle. My introspective tendencies certainly do get me into quite a bit of trouble. 🙂 I’m not used to being “normal” yet, so I’ve forgotten what that must be like. I hope you’re right that PANDAS is behind me. Anyway, thanks again for such wonderful words!