Shining The Spotlight On Chronic Illness & Disabilities Q&A with Iris
July 14, 2019
Hello and welcome back to Shining The Spotlight series. A series where I’ve been showcasing posts from others who have chronic illness and disabilities to attempt in raising awareness of our varying illnesses and disabilities. Today’s post features Iris from The Dreaming Panda.
Before I had you over to Iris. I want to take some time to thank each and every participant who has taken part in Shining The Spotlight, and to everyone who has read, shared and commented on the posts so far.
Introduce yourself and tell us a bit about you?
My name is Iris, but most people online know me as the Dreaming Panda, which is the name of my blog. I’m currently a grad student aspiring towards a career in a STEM field.
Chronic illness(es)/disabilities I have?
I have several, including PANS/PANDAS, POTS, and ME/CFS. I also deal with mental health issues like OCD, depression, and ADD. My blog has mainly been about my journey to recovery from PANDAS/PANS as well as my struggles with Lyme disease. These days, ME/CFS is my main issue.
My symptoms/condition began?
I got PANS at the age of eleven, but I didn’t get diagnosed until I was nineteen. PANS is triggered by infections, so I probably had Lyme disease first which set it off. When I was reinfected with Lyme a few years ago, I got POTS and everything fell apart. I never really recovered from the Lyme even after nearly two years of various combinations of antibiotics. Lyme has left me with an immune deficiency. I developed ME/CFS a couple years after getting Lyme and just two months after my college graduation.
My diagnosis process was?
With PANS, the main symptoms are psychiatric and neurological since it’s an autoimmune reaction in part of the brain, so it was misdiagnosed as mental illness for many years. I had an impressive list of diagnoses that came and went: OCD, anxiety, depression, ADD, anorexia, and Tourette’s. I was also misdiagnosed with a sleep disorder at one point, which is why I’m the “Dreaming” Panda.
I got diagnosed with PANS after falling off the cliff mentally following my first year of college. I developed involuntary movements all over my body over the course of a single day, and then I suddenly fell into the worst depression of my life. Out of nowhere, I stopped eating because I thought everything would make me nauseous (it didn’t, but severe OCD told me it would). Derealization made me feel like I was on another planet from everyone else. I went from being a straight-A student, to struggling just to read a paragraph—my cognitive skills went down the drain. I essentially lost my mind, but nothing my doctors tried helped my symptoms.
Finally, my parents read about PANS and begged for a trial of steroids to see if any of it was autoimmune—since PANS is a clinical diagnosis, sometimes you get diagnosed if you respond to this treatment (and have the symptoms/history consistent with PANS). If the steroids worked, we’d know there was inflammation in my brain. Sure enough, I came back to life. That’s when we realized, with both relief and horror, that I was dealing with an illness still wrongly considered to be on the fringes of medicine––but at least there were treatments for it and the hope of getting better. We travelled to see a PANS expert neurologist a few weeks later, who confirmed the diagnosis. I’ve been getting treated ever since. That was five years ago. I’m now on a regimen of monthly IVIG and IV steroids that have put PANS into remission.
The hardest part of living with my illness/disabilities is?
I don’t deal with PANS day to day anymore other than some slight involuntary movements or tics here and there, but before I got better, the hardest part was that I looked fine and was often physically okay on the outside, but on the inside my brain was not functioning well at all. I could run a half-marathon, but ask me to read a book, and it was like everything was in another language. As someone who’s always excelled at academics and enjoyed challenging myself intellectually, it was devastating to lose my cognitive skills.
These days, with the ME, the hardest part is that my mind is now mostly fine since the PANS is controlled, but my body isn’t working right—the exact opposite of how it was when PANS was at its worst. I want to go full speed and finally go after my dreams now that my brain is better, but my world has become so much smaller. If I overdo it, I can make myself very ill for days or weeks, so I have to be strict about staying within my physical limits. It has also been crushing to no longer be able to run, because that was what got me through so many of my hardships in the past.
People assume that?
People assume that I’m fine when they see me going to class and being productive. But no one knows that sometimes, I’m in bed the rest of the day. Nothing about any of my conditions is immediately apparent, so I’m usually the only one who truly grasps how much I’m struggling. It can be lonely because it’s so hard to get people to understand what I’m going through.
A typical day for me involves?
In the good times, I’m able to do everything I need to but not much more. I go to class, do some homework/research (always at home whenever possible), and then I need a lot of downtime to avoid a ME crash (symptom flare from over-exerting myself). I try to walk at least 2 miles over the course of the day, which is a far cry from the hours and hours I used to be able to spend at the gym. I try to be social as much as I’m able, but I often have to stay in to recover from the rest of the day instead. I consider myself extremely fortunate that the IVIG treatments I get for PANS/immune deficiency also turned my ME into a mild case that’s usually manageable.
In the bad times, however, I still have to spend most of the day in bed. If I don’t have a crushing headache, I may try to do some work lying down with my laptop, but there are plenty of ME crashes when my mind is as spent as my body.
The one thing I cannot live without is?
My friends and family. Their support has helped me get through the hardest five years of my life.
Being ill/disabled has taught me?
I’ve learned to appreciate the good days more than I ever did before my illness. Being sick has made me grateful for the everyday things I used to take for granted, like being able to read a book or get research done or even just enjoy spending time with friends. I’ve also become more compassionate as a result of experiencing an incredible amount of emotional and physical pain thanks to my conditions.
What advice would I give someone recently diagnosed?
To someone just diagnosed with PANS, I’d tell them it might be a long road, but things will get better. You can feel so hopeless with PANS because it’s so hard to find doctors with the expertise to treat you, and the disease itself causes depression as a result of the brain inflammation. It’s also difficult because it often takes a lot of trial and error to find the right treatment, and even when you’ve found one that works, recovery can be slow and complicated. It can feel like you’ll never get better, but there’s always hope.
My support system is?
My family and friends and my therapists. My professors at school are also supportive and understanding of my illness––I wouldn’t have graduated college had they not been accommodating during all of my PANS flares that prevented me from getting any work done.
If I had one day symptom/disability free I would?
I would go on a long run. I miss the runner’s high I’d get after my ten-mile runs and the freedom of knowing I was strong enough to run that far.
One positive of having a chronic illness/disability is?
The people I’ve been able to meet as a result. I’ve made friends in waiting rooms at my specialists that I’m very close to now, as well as become closer to old classmates who’ve also ended up with Lyme or another chronic illness. I’m also glad that sharing my journey on my blog has helped others feel less alone.
The spoonie/disability community has been?
I’ve been so amazed at how supportive and caring my blog followers and the community in general have been. When I started writing, I didn’t know if anyone would be able to connect or relate to a nameless, faceless blogger they knew nothing about, but I get people who email me to see if I’m okay anytime I don’t post for a while!
It’s also helped a lot to know that there are others out there like me who are going through similar things. It can be so lonely in the real world when I’m surrounded mostly by healthy people, so the spoonie/disabilty community has often given me the strength and encouragement I need to keep going and dealing with my struggles.