Grateful to Carrie for sharing this journey will of us! Much love to her and her family. Please go support her work at MySeveralWorlds.com
Your Name (as you want it shared):
Let’s learn more about Carrie! Are you married? Kids? Pets? Work? What do you enjoy?
I’m a Canadian expat who has been living in Asia since 2003. I moved to Taiwan with my husband in 2006 and we’ve lived here ever since. We originally moved to Asia to teach English, but we fell in love with life in Asia. The old Carrie was a dedicated teacher, a professional musician and she loved working out. She traveled to over 35 countries and loved seeing the world and learning about new cultures. She was a big networker and spent a lot of time attending Chamber of Commerce events and networking events to assist the Canadian community in Taiwan while also helping to build strong ties and friendship between Canada and Taiwan.
The new Carrie can’t do any of this anymore. Declining health has left her housebound. Thankfully we are business owners and we were able to get it off the ground shortly after I received my first diagnosis. We had no idea how it would impact my ability to work, but at least it has allowed me to work from home.
Since I’m mostly housebound, I spend a lot of time working on my business and building websites. I love gardening – indoor and outdoor. I practice ikebana, which is the art of Japanese flower arranging. I love making art and I’m a prolific reader and blogger. I’ve been blogging about my life in Asia since January 2007. Blogging is a great coping tool because it allows me to vent when I need to. Plus it’s a great way to meet other people in the chronic illness community.
When were you diagnosed? How old were you at the time? I got my fibromyalgia diagnosis in December 2014 at age 39. I was surprised by it as we thought we had an answer to the chronic pain and health problems I’d been experiencing for 20 years when I received my Axial Spondyloarthritis diagnosis at age 34 in February 2009. But the fibro pain I was experiencing then was completely different to what I had been experiencing with AS, so we knew it was something else. I cried harder about my fibro diagnosis than when I got my AS diagnosis because by that point in my life, I was really struggling to leave my home and cope with the pain. We had no idea what we were in for, and that was compounded by the fact that we live in a foreign country and I am being treated in a foreign healthcare system.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Unfortunately, I have many. I think a lot of patients can relate to that because once you get one, it doesn’t take long for others to show up. I have Axial Spondyloarthritis which is a type of inflammatory spinal arthritis that is similar to RA. In December 2020, my doctors added Psoriatic Arthritis to my list of growing health problems. AS and PSA are in the same family of arthritis and it’s quite common to see an overlap of patients who have Spondylitis and fibromyalgia. I also have an MECFS diagnosis, along with scoliosis, IBS, and chronic insomnia diagnoses, chronic EBV, and migraine, among others.
What led up to your diagnosis (symptoms, doctors visits, etc)?
Since I received my arthritis diagnosis first, the lead-up to that was graphic. I had visible hot, swollen, red joints and every other arthritis symptom in the book. But when Lady Fibro came along, the pain was different to what I was experiencing with AS. For one, it was not localized pain. I had radiating pain that would start in one location and then move everywhere. Plus it wasn’t hitting my joints like arthritis. I’d wake up and feel like I had been punched all over my body. My feet and legs were so sore, it felt like I was standing on shards of glass every day when I got out of bed. I started experiencing strange and severe sensitivities to things in my home and surrounding environment. It’s like fibro took all the allergies I had as a kid and put it on overdrive. I was experiencing severe brain fog and allodynia. Fibro fatigue wiped me out. I couldn’t move without feeling this deep exhaustion that left me feeling like I couldn’t go on. I was expecting my rheumatologist to tell me that the arthritis was getting worse and the medications I was on weren’t working. I was not expecting a fibromyalgia diagnosis or an MECFS diagnosis. It never crossed my mind that it might be something different to what I was already experiencing. AS was already so overwhelming for me! However, my doctor said the first thing they look for with female arthritis patients is fibromyalgia because they go hand and hand. After joining several support groups, I realized this was true. An overwhelming number of women in my arthritis groups have fibromyalgia. My brain fog got worse. Sound and light sensitivities got worse. I was trying to maintain exercise and the limited exercises I was able to do were wiping me out. I remember trying to do a dance class that I had no problem with the year before and I did 15 minutes and had to lie down in the class. It took ages for me to get up and go home. I was so embarrassed. I slowly ground to a halt with work and recreational activities, then one by one, everything I loved doing was taken away. After that, I fell into a deep depression. Obviously there is no visible aspect to fibromyalgia, whereas with AS you can sometimes see something sinister lies beneath the skin. Although AS is systemic, it was not widespread. I’d notice my spine hurt or my knees, hips, hands or feet were affected, but it didn’t hit my whole body like fibromyalgia hits. I have days with fibro when even my teeth, nose, and hair hurts. Plus fibro migraine is torture. I did not experience migraine with just AS. The onset with fibromyalgia was swift and harsh.
What do you feel is the most challenging aspect of living with Fibromyalgia?
I can’t decide what’s worse. The pain never stops and neither does the fatigue. The most challenging aspect was learning how to pace and pay attention to my daily limitations and learning how to say no. As you move deeper through the cycle of illness, the goal posts on limitations are constantly changing. For me, that means constantly revising my pacing plans and revising what I can and shouldn’t do.
How open are you with friends and family about your illness and symptoms?
I’m very open about what I’m going through. But I think it’s hard for my family to understand because they live half a world away. They can see I’m sick when I go home for a month and how it impacts my day-to-day life. I started blogging about my health for family and friends to understand. Initially I started my site as a way to keep them updated about our life and travels in Asia. Eventually I didn’t know what to write about with travel because I was too sick to travel, so I switched to writing full time about being chronically ill in Asia. As soon as I started writing about what I was going through, readers started reaching out. It turns out there is a massive lack of information in English for chronically ill patients in Asia.
How has fibromyalgia affected your relationships?
My family and friends are aware of what my life is like and most of them are supportive. I’ve lost some friends and I don’t speak to my sister much anymore. Overall, I’ve found that most people are very accepting of what has happened to me, but I have had people who say it’s too much to deal with. On the plus side, the friendships I’ve made online are priceless. I am an admin for a group of over 2,000 women who suffer from AS and fibro and I’ve made lifelong friends with that group. I’ve also found fantastic chronically ill friends through blogging and social media. Is it strange to say that strangers have gotten me through tough times? I’ve never met these people, but they know and understand intimate parts of my life better than anyone else except my mom!
What (if anything) have you found/ done that has improved your symptoms?
Acceptance is key. Learning how to pace yourself is essential. I had to limit what I was saying yes to, and I’ve found it’s best to rest and not get overly involved in things outside my home. I’ve retreated a lot from life, but I also expect that the life I was living in my 20s compared to life as I live it at 46 are natural occurrences. I’ve just got more pain and fatigue to cope with. (And some nasty health problems that happen to be lifelong.) I’m grateful my body is still going.
How do you manage on your bad days?
I have different at-home ‘to do’ piles to stay busy. On bad days, rest is best and I rely on books, my cats, Netflix and hot baths to get myself through. On semi-bad days, maybe I can do a little art or indoor gardening or flower arranging. I focus on zen activities that don’t require much energy.
What is the best advice you’ve received regarding Fibromyalgia?
Take things one day at a time. I had to learn to live in the now and not look forward to the future. Staying present in each moment is good because then I’m not focused or stressed out about what I’m going to do tomorrow or next week, especially if flares hit and I can’t do anything.
What is one thing you’ve learned about yourself since your diagnosis?
I’m much stronger than I thought, even though I’m a world-class weakling. If someone had told me 20 years ago that this would be my life, I would’ve laughed and said I couldn’t do it. Now I know I can go through the worst and still find joy in each day.
What’s one good thing that has happened in your life since you became ill?
There are many good things that have happened in my life since I became ill. Life doesn’t stop just because you’re sick. People ask me how I can be happy when I live with so much pain, but illness taught me to find joy in each day, even if it’s just a small moment. I’m grateful for that lesson. I never would’ve learned it had I not gotten sick.
What is it that inspires you to keep going, despite your illness?
What choice do we have? I’m the type of person who has always persevered. I live by the motto, “We Bend, We Don’t Break”. When flares hit I remember: Rest. Reset. Try again. Keep on going.
What is the most important piece of advice you would give to someone newly diagnosed with Fibromyalgia (or even still seeking a diagnosis)?
To newly diagnosed patients, I would encourage you to reach out to veteran patients for guidance. There are so many things I wish I had known when I got my diagnosis. I didn’t know to stop pushing through things, so I kept pushing thinking that eventually it would stop. As a Type A personality, I figured it would stop if I just kept going at it. That’s what I knew up until I got sick. Keep pushing until it’s done. Then move on. But illness has taught me to stop and say no. Learning how to advocate for yourself at appointments is huge. Find a doctor that listens to you and doesn’t put you down or dismiss what you are saying. Before I got my first diagnosis, I was young and people simply did not believe I was sick and in pain. Eventually I normalized that and convinced myself that everyone felt like I did after a work-out or after doing something that requires energy. My doctors constantly told me it was in my head until arthritis showed up in my blood and on my scans. Push for answers. No one will do it for you.
What inspired you to start blogging about your illness?
I started MySeveralWorlds.com in January 2007 as a travel blog that was dedicated to my life in Asia and travels around the world. For several years, it was listed in the top 100 travel blog in the world. When I got my diagnosis after experiencing 20 years of weird symptoms and pain that couldn’t be explained, I felt relief because I had an answer to those problems. I took my travel site and turned it into a blog about being a chronically ill expat in Asia. That idea took off very quickly and I found immediate support. I was shocked to hear from so many chronically ill women in Asia that were looking for information and support in English.
That provided me with further inspiration to adjust my mission statement for My Several Worlds. Now I’m working towards putting Taiwan and Asia on the map for chronically ill patients. I’m advocating for chronic illness awareness in Asia and it has taken off! Blogging has taken my advocacy work to another level and has allowed me to reach patients all over the world. They inspire me to keep on going!
Please list any contact info you’d like to include (blog, twitter, email, FB, etc):
My Several Worlds – Advocating for Chronic Illness Awareness in Asia
My Several Worlds on Facebook