Last Updated on August 24, 2023 by melissanreynolds
Welcome to our very first “Messy Middle” Interview!
The point of this series is to share the experiences of other people in what I’m calling the “messy middle” we have people we are caring for, work demands, life demands, and our health conditions. Please don’t feel excluded if you don’t have children and/or don’t work etc. we want to hear all voices from our community.
Our first interview is a dear friend of mine who also shares her experience living with chronic illness online, she is also the editor of my last book!
Please introduce yourself – your age, location, familial situation and work situation
Hi! My name is Carrie Kellenberger and I’m a disabled Canadian who has lived in Asia for the past 20 years. I came to Taiwan initially to teach and then started my own business. Shortly after I became a new business owner in Taiwan and the death of my brother, my health problems spiraled out of control and I became fully disabled.
I was a full time travel writer for many years until I became too sick to travel. I ended up turning my highly successful travel site into a chronic illness and disability website called MySeveralWorlds.com.
I’m known as a former/retired world traveler, an experienced and recognized patient leader and advocate, and a Canadian who is still accomplishing remarkable things in Taiwan despite enormous health challenges.
I write so you can better understand life with disability related to Chronic Pain, Fibromyalgia, Arthritis, Spondyloarthritis, MECFS, and more. I’m an expert on talking about life with chronic pain and fatigue and how it affects patients. MSW provides information for other chronically ill patients and patient support. My illnesses have shaped the several worlds I live in and have inspired me to support other patients. Welcome to My Several Worlds!
Please outline your condition/s, how long you’ve been diagnosed and your experience in brief
Disabled and living with: Spondyloarthritis (more commonly known as Ankylosing Spondylitis), Psoriatic Arthritis, fibromyalgia, MECFS, IBS, chronic migraine, and chronic tension-headache. I got my first official diagnosis (axSpA) in 2009 at age 34 after suffering from problems since age 14. Fibromyalgia and ME followed shortly after that. I didn’t know that the pain I was experiencing wasn’t normal. I thought everyone felt the way I did. In the past decade, I’ve had a cascade of incoming health problems that are all autoimmune problems. Most recently, I’m trying to recover from a blood clot and Deep Vein Thrombosis and I’ve received a ‘sticky blood’ diagnosis called Antiphospholipid Syndrome which is known as APS for short.
What is your favourite form of self-care?
Art therapy (especially coloring and flower arranging) and reading. I spent a lot of time distracting myself from the distressing things that my body is doing 24/7.
What is your best tool for pain management?
Breath work and distraction techniques.
What is your best tool for fatigue management?
Pacing for pain and fatigue management. ME is very hard to treat. I have to pace myself constantly and I’m very limited with what I can do on a day to day basis.
You can learn more about pacing here.
Do you have children?
I do not have biological children, but I am a stepmom. Our son has just started university.
How do you manage the competing demands in life with your health?
Carefully, but lately it has felt like these last three years have been out of control. I live away from my family and thus things are harder when you don’t have loved ones around. I rely heavily on my expat family for help.
Anything else you’d like to share or say?
MySeveralWorlds.com is about the worlds I live in and the boundaries that blur between my worlds as I move through them. The beauty of my journey is that you can see Asia through the eyes of a foreigner from two perspectives: Readers can learn about my life in Taiwan and previous travels in Asia as I navigate a foreign healthcare system in Mandarin Chinese.
Having lived with chronic illness for over 20 years and living life passionately despite illness and disability, I have a lot of knowledge to offer my readers. I’ve been writing about and advocating for chronic illness awareness since 2009. There are over 900 articles on my site for readers to enjoy. My mission with My Several Worlds is to connect, educate, and inspire chronically ill patients around the world, while also providing much needed resources in English to patients in Asia and around the world.
Let us know where we can find you online!
Find me at MySeveralWorlds.com
I’m most active on Facebook