My name is Kirbay Preuss. I am a full-time manager at my family’s business, Preuss Pets. I teach yoga, and I’m a mom to a 160lb Great Dane and a 17-month-old little bundle of a toddler named Arabella.
FIVE “Invisible Symptoms”
- Extreme brain fog
- Frequent headaches and jaw pain
- Cold/heat intolerance
- Easy to bruise
- Feeling faint/dizzy
FOUR Things to Manage My Pain:
- Talk therapy with a therapist that understands the complexities involved with chronic illness. As a recovering overachiever that literally had no choice but to drop a lot of what I wanted to do in exchange for what my body/mind could tolerate with EDS, I have had to do a lot of healthy identity/self-worth work.
- Yoga and Barre in a modified way. I became pretty attached to yoga at a young age when a teacher reinforced my “amazing abilities to achieve the poses with such flexibility and grace.” Little did I know at the time that I was injuring myself further by practicing the way I thought I could and should be. I’m grateful I found barre because it’s a series of smaller range of motion movements, and with the proper modifications, I find it strengthens and helps with my joint instability. I recently did a barre training. I also teach yoga and have since 2008. I am grateful to understand the needed modifications for my condition and enjoy helping others with hypermobility. The wrong class can make things worse. I like to think of exercise as my daily medicine. If I can get even just 10 minutes a day of strength training work in, everything works so much better. Exercise also helps my POTS.
- Surrounding myself with supportive people who understand chronic illnesses. It can be so lonely without a community, and you can start to question your own sanity. I’m really grateful for people like Katie who are committed to bringing us together. It’s only invisible to others who choose not to see it. Those who love us see the truth because they listen and learn lovingly.
- Proper diet. When I went to my rheumatologist for the first time, I learned water is crucial and without being properly hydrated everything will get worse. This definitely includes the brain fog. She also helps remind me I need to stay committed to a low inflammation diet. That one ebbs and flows. I’m always trying to kick my refined sugar obsession!
THREE ways my life has changed:
- The realization that I can’t do everything like I used to, and that I need to ask for help. The acknowledgement that because it is an invisible illness, I have to communicate vocally and tell people what I need because they cannot read my mind or understand what I feel like. I also can’t beat myself up for asking for help with things I perceive as simple. Some days that’s just my reality- For example, I can’t lift our baby or even buckle her car seat. And that’s okay.
- I have a chronic illness budget. And it’s non-negotiable. I used to beat myself up for spending my budget on “self-care.” I felt like I was being too needy. Now I realize I am not functional without it and it’s a must. Those massages, barre and yoga packages, and other much needed “therapies” have to be prioritized.
- Relationships have failed. Yes- unfortunately a lot of people won’t understand that people with EDS have higher support needs. It’s okay if those relationships fail – you want someone who wants to love you through it all. It took me a long time to accept that. It’s not about you – it’s about them and their journey of acceptance/willingness. This isn’t just romantic relationships either. It’s friends who understand when you can’t go out or when you need to cancel so you can just sleep.
TWO people who inspire you/give you hope:
- My friend Misty Belous who has been a yoga instructor in my life since I was 15 years old. She’s never pushed or asked anything of me other than to honor my body and my healthy limits. She teaches and owns Peoples Yoga on Washington Ave in REO Town.
- My daughter! She gives me the strength and hope for tomorrow. A ray of sunshine on a cloudy day.
ONE thing you want people to know:
It’s okay to be angry and sad when you have the condition you do. Just don’t stay there. There is a world waiting for you. You are valued and loved.