As graduation approached last semester, people constantly asked what was next. What did I want to do with my life? Did I have a job? Would I stay in the city? Was I going to grad school?
Before my PANS relapse in August, I thought I knew all the answers. However, this disease returned not only to attack my brain, but to destroy all my plans.
As a summa cum laude graduate and valedictorian of my department, everyone expected me to have great things lined up after school. Instead, as I type this, I’m sprawled on the sofa at my parents’ house, too weak and sick from my Bartonella treatments to even unpack the rest of my belongings. I have no job and no plans to get one anytime soon.
To be honest, some days, I feel like a failure, because I’m unemployed and making no headway in my career at the moment. Although I’m grateful to be in a situation where I don’t have to support myself financially for the time being, as an over-achiever, it’s not easy feeling like I’m “slacking off” by doing nothing but blogging, tweeting, and Netflix on many days.
But now I’ve come to realize I’m doing something that has never come easily; in a strange way, it’s one of the toughest jobs of all for me: rest and recovery.
I’m one of those people that tends to get her identity too wrapped up in what I can do rather than who I am as a human being. It feels unnatural for someone as driven as I am to sit back and just “be.” However, I’m realizing that resting is what will allow my body to work its hardest at getting me well enough to return to what I love.
What Made Me Realize I Need to Rest So Badly?
My success in college came at a hefty price. Though I used plenty of healthy and clever strategies (which I’ll share in my upcoming guide/memoir book on college and chronic illness), quite often, my high GPA also involved a lot of adrenaline and pushing myself to the limit and nowhere near enough sleep.
To be honest, it’s astonishing I made any headway at all in my PANS/Lyme recovery over the last few years, given the level of stress I had.
Not surprisingly, now that college is over, it’s as if my body has realized it’s “safe” to fall apart. My Lyme is flaring up and/or I’m herxing much more often, so I literally feel like I have the flu half the time. A couple of months ago, I ran fifteen miles at once, but now, I’m lucky if I can run at all.
So I’m taking a step back and giving myself what I’ve denied over the last few years:
Rest
For the next few months, my number one priority in life is going to be rest and healing. If I don’t give myself the best shot at recovery now, I may never get back to the fast-paced, adventure-packed life I’ve long dreamed about. Rest is the pre-requisite not just for being well enough to start grad school in the fall, but for being able to live any part of my life hereafter.
So let me be clear: I’m not at all complaining that I can afford to put everything on hold and rest. I’m not trying to get you to feel bad for me, because I know plenty of people don’t have this unwanted “luxury.” It’s just that moving back in with my parents was never in my plan, and it’s harder than I thought to accept that I’m not well enough to work right now.
However, my time of “rest” for the next few months actually involves a lot more work than I first thought….
So What Does the Rest I Speak of Entail?
For ten hours per week, I’ll be going to intensive outpatient therapy for my eating disorder. My behaviors have gotten to the point where every other domain of my life has suffered because of them. How can I fight off an infection like Lyme Disease if I’m not giving my body consistent nutrition? In a lot of ways, my eating disorder recovery may very well be the gatekeeper to my wellness in all other areas.
As far as PANS and Lyme treatments go, I’m sticking to my Bartonella/Lyme protocol for a couple more months and seeing if it knocks out what’s left of my symptoms. I’m hoping the antibiotics don’t cause so much inflammation that I need IV steroids again, but if they do, that’s on the table. I won’t be doing Rituxan until absolutely certain there are no infections left—and then only if it’s unmistakably clear that I need it.
Finally, there’s one more thing I’m doing during my time of rest: writing my book on how I excelled in college while fighting my chronic illnesses. I hope that by sharing what I’ve learned, I can help others facing similar challenges while trying to do school—and hopefully help people avoid some of the mistakes I made. Yes, writing a book is a lot of work in some ways, but I’m finding it to be a refreshing and enjoyable process.
Okay, well, it’s 1:00 in the morning and I’m still awake typing this… Oops. I need to practice what I preach about making rest a priority!
So, anyway, I’m done feeling ashamed or embarrassed about not having a “real job.” My resting and pursuit of recovery in order to beat PANS, Lyme, and my eating disorder is no easy task—and in the end, has a greater reward than any job I could’ve taken right now.
I apologize in advance for this essay😅 I understand if you don’t read it in its entirety haha
I’m so glad to know that you have a similar relationship with rest. Although I’m not sure how much it’s related to my PANDAS yet, I had a MAJOR change at the end of college after pushing myself and I graduated with cum laude (not being naturally good at making straight As). I broke down with extreme depression and anxiety, started having seizures, and then I was so exhausted that I couldn’t even sit up straight or walk at a brisk pace and had no choice but to ask for extensions on ALL my final projects/essays (something I NEVER needed). I realize now that I pushed myself too hard for 5 years and graduated in 2014.
Between then and now, I had a couple jobs that lasted less than a year after getting general depression treatment. So, after that, I kinda fumbled around, living on my savings only, for a couple years, not able to muster up the energy to have an actual job. In that time, I was trying to figure out how to feel better. I realized I needed rest, so I rested and had fun. After a couple years, things began to get worse and I needed to move back in with my parents after trying to live with other people.
I still don’t have a “job” to this day and I often feel awful about it because I KNOW I can get work done and such things. My parents also judge me silently for my lack of a job and I just never know what to do because I know I need rest, but sometimes I think that maybe I’m not all that ill and that I should PUSH myself to work anyway.
I JUST got my diagnosis for adult PANDAS (and thyroid and blood sugar issues) in December 2017, so perhaps, this is only the beginning of my recovery and I need to continue my restful state without pressuring myself despite what my parents or peers think…
It’s very difficult to not guilt trip yourself and I’m glad you don’t feel that way anymore.
Thank you
No need to apologize for a long comment. I read and respond to every one I get. 🙂
I’m still struggling with allowing myself to rest, to be honest. It’s hard seeing my friends getting jobs and getting married (and being happy for them!) while I’m sitting at home with my parents and not working. You’re not alone! I think there are so many adults with PANS/Autoimmune Encephalitis who are in a similar situation.
If you’ve just been diagnosed, it’s probably a good idea to focus on getting better. Have you been able to start treatment? I wonder if I would still be recovering and dealing with symptoms today if I had taken time off from school when I began treatment in 2014. Your dreams will still be there for you when you’re healthy–but when you’re well, chasing and enjoying them will be so much better. And even if it doesn’t seem like it, I do know that people beat PANDAS and go on with their lives.
Maybe either of us COULD get a job right now, but that doesn’t mean we SHOULD. You reached your breaking point in college, and the last thing you would want is to repeat that by continuing to push yourself too far. I’ve found it’s always a very fine line between pushing myself in order to stay engaged with life and resting enough to recover. I’m still trying to figure out where that line is. You’re not the only one wrestling with this.
I’m sorry that you had to go through so much during school, but way to go for graduating! It sounds like you’re a very smart and driven person, so if your instincts are telling you to rest right now, then you should rest. No one who is lazy could have made it through college cum laude with those incredible challenges you described.
Have you been able to explain to your parents how serious PANDAS is? That it’s brain inflammation, which is invisible from the outside–but very real? It’s pretty much impossible for anyone who hasn’t experienced PANDAS to understand it, but hopefully they will start to believe you more.
I hope things get better for you soon! You deserve to live the life you want.
Thank you so much for your thorough response! Wow. I feel much better. I just began treatment in mid December and I’ve had another diagnosis that I’m just now treating. I didn’t start any real treatment for any of my issues until October! I found that the ketogenic diet is amazing as well. I have a doctor who doesn’t give pharmaceutical psychiatric medications. She even hates giving me the antibiotics I’m on, but it’s the only way.
Yes, I agree. I mean, I bet both of us, considering how we did in school, would do well at a job, but our health woul probably suffer from it as a result. Have you thought of getting on disability until you feel better to get a job full time job?
I will talk to them about it better… I think my condition has been most of my life, so I think I’ve developed a bad communication habit with them as a result and vice versa
Thank you again!
Oh, good, I’m glad you have someone that’s helping you. I’ve mostly just worried that I’ll need to be on disability, but it’s not something I want to pursue. Honestly, I think my parents would let me live with them if it got to that point. I’ve decided to go the free-lance/entrepreneurial route with my career, so hopefully I’ll get to a place where I can work enough that I can at least sustain myself.
As you fight these infections and eating disorder, you’re fighting for the future you’ve always dreamed of. What you’re doing — or not doing — is surely very important and essential for the present you and the future you. Blessings!
Thank you! That’s what I have to keep telling myself. 🙂
Yes, please make rest a priority now! In time you will get where you’re supposed to be. Good luck writing your book. It can be a welcome distraction.
Thank you! It’s definitely been a great distraction so far.