PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Archive for the ‘Anorexia’ Category

I Am Not an Illness

Sometimes, I don’t know who I am anymore

It was 5:00 in the morning, the day’s homework wasn’t finished, and a test that I would surely fail loomed over me. My kitchen counter-top was covered in crumbs and empty wrappers, and I’d been spinning on my stationary bike for the last three hours. My laptop was opened to my class notes, but I had a major food hangover from the 4000 calories I’d consumed just hours before. Studying was near impossible.

As I realized I’d spent the whole night exercising and making calorie calculations rather than actually doing anything productive, I asked myself… What has become of my life?

At one point, I stopped biking and took my computer to the living room for a break for my exhausted body and mind. When I opened my Instagram, there, staring back at me, was a picture from a couple days before, in which I was beaming and glowing in a crisp dress following a successful presentation I’d given at school.

Seeing this happy person cut straight to my heart. How could I possibly have transformed into a binging monster less than 48 hours later? Why couldn’t I stop eating and just hold myself together? If only people knew who I really was—the girl that has Lyme disease as well as an eating disorder that’s spiraling farther and farther out of control—the younger students would no longer look up to me, and my professors would lose their respect for all I’d done.

But then, it hit me: that pretty, intelligent woman plastered to my profile page… That was the real me—not the girl who stuffs her face with junkiest binge food she can find into the wee hours of the morning, despite already feeling like her stomach might explode. Nor am I the girl that screams about wanting to die because of the psychological torment that an inflamed brain brings about.

Over the last ten years of PANS, I’ve so often felt like a person I don’t recognize. Sometimes, I’ve forgotten who I am, because it seems like I’m nothing more than an illness that’s taken over my mind and life. But I am not Lyme disease or PANS or an eating disorder… I am me.

In my worst times, I do my best to not think about who the real me might be, and I try to forget what life is like when I’m well—it seems too painful to realize everything that my illness can rob when it takes control. Yet this week, I’ve started to think that maybe, just maybe, it’s important to hold onto the memories of the better times, because they’re reminders that I am more than an illness or a set of debilitating psychiatric problems.

I don’t believe that PANS can ruin who we are—it can only obscure it. Beneath the brain inflammation and the torturous symptoms, there is still a soul and a personality that is waiting to resurface once healing comes. I may have PANS, but PANS doesn’t have me.

As I closed my computer, gathered up my notes, and packed up my backpack later that morning, for the first time in a long time, I felt hope that there will be a time when I can feel like the person in my Instagram photo every day—the woman that everyone else sees from the outside. Someday, PANS will hide me no more.

Why I Quit Therapy

Dissecting and discussing every meal isn’t helping

This week, I quit therapy.

Wait a minute… I was nearing hospitalization for anorexia just seven months ago, and my psychiatrist recently suggested intensive outpatient was reasonable, and now I’m not even addressing it at all?

Yes, that’s right… Sort of.

So am I giving up on recovery? Did I suddenly get better? Well, no. I’ve just had enough of therapy.

I’m sick of writing down every bite I put into my mouth. I’m sick of dissecting and talking about every meal. I’m sick of being told to eat more or to eat less. I’m sick of being told that my normal weight isn’t “healthy.” I’m sick of feeling brainwashed into accepting a body that I didn’t have before my disorder. I’m sick of everything being put under a microscope. I’m sick of wasting my time.

Dealing with Lyme and the other PANS symptoms is taxing enough, and recovering from an eating disorder takes total dedication. I’m simply trying to survive at this point, so something as demanding as intensive outpatient therapy is out of the question. As it is, getting myself to class for nine hours per week and doing the required work is hard enough. For that matter, I have days when I can barely get dressed. Do you really think I’m in any shape to drag myself to therapy for fifteen hours a week?

Now before you start telling me that recovery is the most important thing and that I need to put my health first, I want to say that I agree with that. In fact, I spent several months talking to a nutritionist and a therapist each week with regular check-ins with my psychiatrist, but truth be told, my eating is almost as disordered now as it was when I started (though in different ways). All those hours of therapy yielded few results.

I still count calories and restrict or binge, depending on the day (though I’m managing to maintain a consistent and healthy weight range). I still have rules about when and how I should eat. I still basically only eat soft foods/fruits (I think this is more of a sensory issue than an eating disorder fear, though). I still try to avoid restaurants like the plague, because I don’t know what they might be sneaking into my food. I don’t deny that I still need help, but the help I was getting wasn’t working.

I quit therapy because talking about food so much was only magnifying my obsessions. I quit because I’m healthy (or as healthy as someone can be with late-stage Lyme) and not in physical danger.  I quit because I simply don’t have the mental energy to try to break free from my rituals at the moment.

I’m not here to recommend others quit therapy—I know it helps a lot of people, and there were times when it seemed to help me. But for me right now, it was the right choice. I continue to hold out hope that, eventually, when my Lyme and PANS are under control, the thoughts and rituals will quiet down.  I’ve noticed that sometimes, when I’m not having PANS symptoms, the food obsessions are gone, too.  But if someday, I’m otherwise better and still have an eating disorder, I just might go back to therapy.

Why I’m Struggling through College… For the 8th Time

With PANS and Lyme, homework isn't the only thing making college so difficult.

With PANS/Lyme, homework is far from the only reason college is so difficult…

It was with a truckload of emotions that I pulled up to my apartment last Monday night, before my eighth semester of college. While being at school means seeing my friends again and keeping busy with interesting things, it also usually means grinding myself into pieces as I try to get all the required work done in the midst of PANS and Lyme. College isn’t easy for anyone, but trying to do it with these chronic illnesses can make it a hundred times worse.

I thought I was looking forward to being back, but as I began to unpack, I was overcome with dread and despair, and I had a meltdown. This wasn’t a PANDAS-triggered flare meltdown—this was the meltdown of someone who is simply beyond tired of having to function with a debilitating illness. Yes, it’s important to realize that not every emotional outburst from someone with PANS is caused by brain inflammation—we’re human just like everyone else.

Even though I made straight-A’s last semester and seemed totally together on the outside, honestly, I was a train wreck most of the time. I easily spent (and still spend) two or more hours a day on food-related rituals and obsessions. I restricted until I became too weak to walk to class without losing my breath. And then I binged a lot… And purged. (How I got to that point after not eating because I feared vomiting so much a couple years ago is beyond me.)

As if an eating disorder weren’t bad enough, I had one horrendous PANS flare that almost hospitalized me, and several others that left me unable to get any work done. Sometimes, it took me eight hours to get over my anxiety about starting an assignment, and then another four to complete it. I often slept only two hours and lived off caffeine.

If last semester were the only one that was so difficult, maybe I wouldn’t have been so upset about the idea of getting through another semester. But truth be told, most of my semesters have been almost as bad—and some worse…

Freshman year, I was at least halfway asleep most of the time, which resulted in a narcolepsy misdiagnosis (hence my being the “Dreaming” Panda). Sophomore year, I was often half-crazy, because I had terrible PANS flares every week or two, and in between them, I was barely living. Junior year, I was almost okay… Until I got Lyme disease and anorexia in the spring.

Would you want to be back at college if this was how it’d gone so far?

Yet as hard as college has been, I decided this week to gird my loins and do whatever it takes to finish—even though it means enrolling in 16 credits now so that I can graduate in December. The thought of staying beyond then is simply too much to handle.

Indeed, these first three days of school have been anything but easy so far. I have more homework than ever before, and more pressure to do well now that I’m a senior. And on the second day of class, I had a Herxheimer reaction that put me on the couch and shut me up inside my apartment all weekend—but thankfully, I was actually able to get some work done.

But you know what? Even though college with Lyme and PANS is difficult, I’m just glad that my Lyme treatments have made me well enough to be here trying at all. A month ago, my family and I were looking into residential care, so I consider it a gift to even be able to struggle through school again.

At the start of every semester, my parents have tried to encourage me by saying, “Maybe this semester will be better than the last one.” Much of the time, it hasn’t been, but my Lyme treatment is most definitely relieving my symptoms already. And so, this time, I’ll join in their optimism:

Maybe this semester will be better than all the other tough semesters…

Why I’m Finally Choosing Recovery

I'm choosing recovery... One day and one meal at a time

I’m choosing recovery… One day and one meal at a time

Anorexia nervosa: two words that hold an unspeakable amount of pain and torment; an illness that takes over your mind and ravages your body; a disease that kills 5% of its victims; a nightmare that ruins your life; a condition that might happen to other people, but not to me… Until it did.

After more than ten years of living with PANS, I can still say I never know what it has in store for me next. Just when I was sure I’d beaten it into submission last semester, PANS came back and reared its ugly head primarily as anorexia. It started so suddenly—in a single day—when I developed a flu-like illness, and then I starved myself for four months, losing twenty pounds and everything that defined me as a person along the way. Just as I was about to end up in the hospital in August, IVIG treatment calmed my PANS enough for me to push past my food fears and begin to fight my way back to health.

In the beginning, I’d hoped that after my brain inflammation was more under control, I eventually wouldn’t have to deal with the anorexia thoughts anymore—that they would go away as suddenly as they came on. Perhaps this day will come, but so far, I’ve had to fight hard for every bit of freedom that I’ve since gained.

Although my brain has healed a lot since August, and most of my other PANS symptoms are nearly gone, dealing with the eating disorder has still been a beast. I don’t think I started out with a lot of body image issues, but I managed to pick them up at some point, so each time I’ve gotten my weight near its healthy range, I’ve freaked out and returned to restricting—and then gotten sick. As if that weren’t bad enough, when my treatment team is able to talk some sense into me after I lose weight, I just binge and purge the weight back on. So I’ve now been alternating between anorexic restriction and bulimic behaviors; I’ve been hovering around a healthy weight for months, though never staying anywhere for very long.

You see, even though I’ve earnestly been trying to recover since August, I’ve been afraid of what might happen if I completely let go and fully trusted my body to settle at its healthiest weight. I’ve been afraid of following my meal plan. I’ve been afraid of losing control. I’ve been afraid of feeling like a failure. I’ve been afraid of not being perfect. So I’ve only been partially recovered this whole time: no longer in imminent physical danger, but not yet mentally well.

However, a couple weeks ago, after yet another round of binges, I realized something… There was no way embracing healing could possible be any worse than the way I’d been living in partial recovery. If gaining weight made me miserable, then I might as well be miserable and getting better, as opposed to miserable and still stuck in disordered eating. So I decided that it was time to ignore my fears, start following my meal plan, and go all-in with recovery.

Since then, I can’t say it’s felt good to gain several more pounds, but I’m clinging to the hope that I’m heading for better times. I so often long to be as I was in the days before I became ill in April—when I was healthy, virtually symptom-free, seven pounds lighter, and without an eating disorder. I can’t change the past, but I believe that if I choose recovery, I can welcome a better future, free from PANS and Anorexia.

Why I Won’t Eat

You know it's a problem when you feel guilty about eating an apple.

You know it’s a problem when you feel guilty about eating an apple.

With this latest flare, I’ve been struggling with an eating disorder again.  Restricted food intake is one of the two major diagnostic criteria for PANS, so my new obsession is nothing unusual.  In fact, this is the third time in my life that I’ve faced an eating disorder: the first was when I was nine or ten and the second was in 2014.

This time, my eating problems began suddenly, a few days before a bad virus three months ago.  There have since been periods when I ate without guilt and felt no need to restrict, but at other times I’ve suddenly become completely tormented by food—classic PANS.  My eating disorder is, in essence, mental and physical torture.

PANS-related anorexia isn’t necessarily like typical Anorexia Nervosa, however. In my case, I’m fully aware that I’m too skinny, but I’m compelled to continue my restricting anyway. In the past, I’ve also restricted because I was convinced that virtually all food would make me throw up, so the only thing I would eat was one particular kind of fruit smoothie.  Now, I’m afraid eating will make me gain weight and lose control of myself, so I’m obsessed with consuming a certain number of calories each day.

Living with my PANDAS-triggered eating disorder is like watching myself drive towards a cliff and not being able to stop, even though I’m the one behind the wheel. I know my behavior is dangerous, but I feel compelled to continue anyway.  I know I’m losing an unsafe amount of weight, and I know it’s bad to not eat. But the anxiety caused by eating any more is so intense that I would rather continue to restrict. Even worse, there’s some part of me that derives a twisted form of pleasure from not eating.

Sometimes, I also still enjoy the taste of food, but I often feel bad about it afterwards. In my mind, no matter how little I’ve eaten, I’ve always eaten too much, so I’m always guaranteed to gain weight. I know what my doctors will say about me weighing only 96 pounds, and I know it’s dangerous to have lost 13% of my initial, healthy weight. But for some reason, I just feel like I need to keep going, and the torment surrounding this urge is too strong to resist.

All day long, I’m doing calorie math in my head, planning my meals for days. I feel guilty about what I ate, and unsatisfied with what I didn’t—PANDAS tells me I’ve never eaten too little.  I’m beyond exhausted all the time, and I fear it’s because I’m malnourished.

I never imagined I’d become so ill again. I never thought I’d take things this far. Sometimes, I don’t feel like I have a problem, because I believe so strongly that I’m still in control of my eating disorder. But part of me knows that while I thought restricting would give me control over my body, it’s instead made me lose all control I had left.

On some level, I find comfort in the “control” I think I have through restricting, but deep down, I know I can’t continue like this. Deep down, all I really want is to be able to enjoy food again without any guilt and to be strong enough to run.

I’m tired of food controlling my life, and I’m tired of feeling so bad, so I’ve decided to start outpatient treatment for my eating disorder. And of course, I’m going back to see my PANDAS doctor to address the brain inflammation that triggered it in the first place.  Finally, I’m going to have the Igenex labs run to test for Lyme and co-infections (in addition to a couple dozen other blood tests).

Although I’m scared to stop restricting, I’m so ready to be free and strong.  I’ve decided that, somehow, I’m going to eat with pleasure again. 

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