This picture is of me doing Parakeet — a pilates move based on control, balance, and some strength. You don’t have to be a super athlete to do it, but it sure looks cool during times when I am experiencing a flare and could barely walk. I wanted to share this picture because of what I wrote and to show you how I can move when I don’t have a flare. Living with an autoimmune conditions takes a lot of twist and turns. Why developing self-compassion and a support group has been so important for me as part of my healing journey.
I wrote an article on Medium yesterday and wanted to share what I wrote here.
Being stiff sucks, but not as much as it did a couple of days ago — when I could barely walk.
Seating on my couch, I tried to retrace my steps to figure out why I was in so much pain and could barely see out of my left eye about two weeks ago. For those of you who haven’t figured out, I was experiencing a flare (when someone with an autoimmune conditions feels more of their symptoms).
“Why is this happening?” were questions asked by my friends, colleagues, doctors and even myself. This question was typically followed with another one, such as ‘“What did I do?” or “Was I stressed out about something?”’ For the latter, I would respond with a solid, ”Nope.” If anything, I was only feeling more stressed because of this damn flare! So what could have started it? What did I do that was different the past few weeks or days?
Okay, well there was something I did do differently. A couple of weeks ago, I ate a chocolate cake from a BBQ that I assumed was flourless. Apparently, it was not. The day I ate it, I started to notice something different about me, but I ignored it; thinking I was going to be just fine.
After several days, my body started showing signs of fierce retaliation with this ‘flourless’ cake. One of the first signs I knew something was up was when I started to experience a scratchy sensation in my left eye. This mild irritation slowly transformed into a bout of photophobia (when the eye becomes sensitive to light) — something was going terribly wrong.
This was definitely a case of uveitis (when part of the iris becomes inflamed). I haven’t had uveitis for at least 2.5 years— when I started the autoimmunepaleo protocol (a paleo based elimination diet and lifestyle). Before starting the diet elimination part of the autoimmunepaleo (AIP) , I took biologics (powerful anti-inflammatory drugs) to reduce my symptoms of uveitis and spondylitis.
Being drug-free and uveitis-free, since going AIP, I was in heaven for 2.5 years! I forgot that I could get flares like this serious one again. I also didn’t think by eating a piece of chocolate cake that I could go back to my same old self.
Now, I was back to filling my free time with doctor appointments, going to the pharmacy for steroids, and sitting indoors with a baseball cap and shades because natural light irritated my eye. All for eating a stupid yet delicious large piece of chocolate cake. Worth it? Kind of… but I don’t think to this negative degree on my health.
I just wanted to make it go away without the use of drugs. At the same time, I was also working with my feelings of shame. Leading a San Francisco autoimmunepaleo (AIP) support group, studying the impact of gluten on autoimmune conditions, and blogging about gluten-free recipes and wellness, how could I have made this type of mistake? I wanted to be a leader who knew better. But I guess I am not that perfect person. I am still learning to take care of myself and learning through my mistakes.
Fortunately, I have learned a lot since my last flare. Being a nutrition nerd and student at Bauman College for Holistic Nutrition, I figured out what I could do to calm my flare.
Once I targeted what initiated my current flare, I started an appropriate healing protocol for me. I started drinking bone broths, chewing more, drinking bitters and sour concoctions, meditating more, doing less, taking more naps, and taking both supplements and herbal antibiotics. After a week’s worth of appropriate self-care, I was back to walking and seeing normal again. During this time, I still took a steriod for my eye; respecting both western and eastern practices when used appropriately.
With flares like this one, I don’t take for granted my movement capability or get down on myself for not working harder to be part of some fitspo community on social media. As a movement instructor and healer, I simply want to walk and see. And to teach my clients and community how to move smarter, get stronger, and feel better. I lost my ego to looking like a super fit model for inspiration a long time ago. Plus, I have been there, done that. And learned that you can look fit, but not feel well too. Another topic, I can discuss in another article.
In addition, I am grateful for knowing what to do when I get my flares. I may not be perfect with every decision I make — especially if the decision has to do with ‘chocolate’ & ‘cake,’ but I can continue to work on putting myself together whenever I do fall apart.
I have shared this part of my life with you in hopes that you may find some self-compassion and light humor when you find yourself straying from your wellness rituals. Lastly, I wrote this piece to help you understand a small part of what some people with autoimmune conditions may experience.