The other night, a horrifying realization jolted me awake: I haven’t rode my bike in over two years.
Suddenly, the memories came rushing back, and I imagined myself biking like I once did. I remembered how, in college, I would bike to errands and class. I remembered zipping around town with the wind in my hair. I remembered the long rides in the bike lanes and on the greenway, and my riding buddy’s incredulousness when I’d already run ten miles that morning and still was hard to catch.
I know you feel like a stranger in your own life right now while you’re the sickest you’ve ever been with PANS. I know you’re scared, lonely, and unsure if there will ever be anything more to your life than this illness that attacked your brain and kidnapped you from your own body. I know you feel invisible because of all the hours you’re trapped in your room and all the days when you’re trapped in a mind you no longer recognize. You feel unseen because no one knows how much it takes for you to accomplish what others take for granted.
Continue reading “Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life”
Last I wrote, I had resolved to do whatever it took to stay in the Partial Hospitalization program. And guess what happened? I left the program. 😬
Part of it is that my insurance only approved a certain number of days. I could have fought for more. However, the more I thought about the whole program, the more I began to realize why it was time to go home.
Today, I’m so excited to introduce all of you to author Madeline Dyer, who has just published a gripping collection of poems, Captive, on her journey through Autoimmune Basal Ganglia Encephalitis, aka PANS.
“I just want to get better
and see the stars
and believe in hope again.”
As someone who has lived with this condition myself for over half my life, I can say that I felt this opening poem, and the pages that follow, on a deep level. PANS has a way of making the sufferer feel completely hopeless, and this sentiment is one that just about all of us have felt while in the depths of the condition. Admittedly, I’m not a poet and don’t read much poetry, but I was able to get into this book.
Continue reading “Special Guest: Interview with Author and PANS Survivor Madeline Dyer”
After finishing an entire week in a Partial Hospitalization Program for eating disorders, I am both more optimistic and more pessimistic about moving forward. As expected, I had a big ME/CFS crash on Saturday, the day after the week of PHP finishes. It’s pushing my body past its limit. I’m willing to put up with the worsened symptoms as long as I’m not causing long-term harm, but it’s a fine line. Continue reading “PHP Day 7: “It’s Rehab for Your GI System.””
Today makes my third day of Partial Hospitalization, and I already know I need to stay more than a week—and I’m mostly okay with that, but not sure whether my body will allow it.
Looking back at the last few months, I’m starting to see that, as usual, my psychiatrist has been right in saying I need to be here. As it turns out, it doesn’t much matter why I’ve lost this much weight below my healthy place because I’ve ended up with the same physiological consequences and even some of the distorted thinking of anyone with an eating disorder… My hair was starting to fall out. Continue reading “PHP Day 3: “You Didn’t Fail.””
Today was my first day of Partial Hospitalization, and it went both better and worse than I expected.
I don’t normally post two days in a row, but I’m in a writing mood and thought a few people might be interested in reading about my time in a partial hospitalization program for eating disorders over the next few days. I’m not sure if I’ll post every day or not, but today I need to talk about what happened. Continue reading “PHP Day 1: “I Won’t Put It On.””
“You need to go back,” my doctor warned me one day this summer.
I wiped the tears off my face and sighed. “I haven’t been able to walk more than a hundred feet in two months. You think I have energy for three hours of therapy three times a week?”
“You need the support… You’re getting worse and worse.”
I paused, knowing he wasn’t wrong—my psychiatrist is never wrong, and it’s maddening. “I know. But if going to therapy takes up all my energy, I’ll be too sick to participate. Isn’t there another way?”
Continue reading “The Perils of Partial Hospitalization—And Why I’ve Agreed to Go”
“Just go to the lab,” the doctor says, handing me a long list of tests.
“I have a port,” I remind her. “You’ll have to send this to the infusion center since my veins are too scarred.”
She paused, mulling it over for a second. “Well, the lab is where you get blood drawn, so I’m sure someone there will help you.”
“But phlebotomists can’t access a port.”
“They’ll find someone,” she ushers me out of the office, leaving me to hang out and dry and ignoring farther warnings about what will happen to me if I go to the outpatient lab…
Continue reading “The Problem with Having an Anxiety Disorder AND Another Chronic Illness”
This Thanksgiving week, at a time when almost everyone is stressing out over travel and preparations and relatives, for those of us with chronic illnesses, the season brings additional sets of challenges.
Chances are, if you don’t have a chronic illness yourself, then one of your family members that you’re about to see does. It can feel awkward wondering what you should and shouldn’t say to this person, but as someone with both physical and mental health challenges, I’ve assembled a few tips for loved ones.
Continue reading “8 Ways to Help a Loved One with Chronic Illness During Holidays”
