I always like to hear about fellow patients’ journeys with chronic illness. It helps us learn from each other and raise awareness about how our chronic illnesses started and how it impacts our lives. Today I’m happy to share with you my blogging friend and name twin Tanya from My Fruitful Home. Tanya interviewed me about Motherhood and Chronic Illness a few weeks ago and now it’s our turn to hear her story. If you’d like to share your story or helpful tips about living and thriving with chronic illness, please let me know in the comments.
My Journey with Chronic Illness
By Tanya from My Fruitful Home
Hello, Mom’s Small Victories readers. I’m Tanya from My Fruitful Home and I am honored to be here. I blog about living abundantly with fibromyalgia and chronic fatigue syndrome. My journey started many years ago. My husband and I got married in our early twenties and will be celebrating our twenty-fifth wedding anniversary. Wow! That’s hard to believe. One month after our honeymoon we found out I was pregnant. We were very surprised; we both wanted children, but not so soon. We eventually got use to the idea and were very excited. We had a girl and named her Kaitlyn Miranda. She was so tiny at four and a half pounds, but fully developed.
She became very ill at six weeks old. We found out she had cytomegalovirus, CMV for short. It is in the herpes family, along with chicken pox. I found out I was actively carrying the virus as well. Almost everyone has had CMV. It usually manifests itself as the common cold, but in babies in utero or newborn it can be devastating. She was in the hospital for two and a half months. During this time I was staying at the Ronald McDonald House. A few weeks into our daughter’s hospital stay I started feeling sick. I was exhausted, getting terrible headaches, body aches and light headedness. It was a scary time trying to be there for my sick child while having all these strange symptoms.
My husband took me home to see my family doctor, but I was told it was just stress from my situation. I ended up seeing a cardiologist, rheumatologist, infectious disease doctor, and a specialist in chronic diseases. I was diagnosed with lupus at first. Later on the doctor called back and said it wasn’t lupus after all. The rheumatologist diagnosed me with fibromyalgia and prescribed a couple of medications. I still didn’t feel much better. Another doctor diagnosed me with chronic fatigue syndrome. I was then told they were one in the same. I do believe they have a lot of overlapping symptoms and you can have both at the same time, but I do think they are different. Doctors think they may be a connection to the CMV virus and chronic fatigue syndrome. Stress also plays a big part. We finally got to bring our daughter home on oxygen and a feeding tube. We had nurses around the clock at first. Some nurses gave me a hard time about needing to sleep, which only added to my guilt.
When Kaitlyn was two and a half years old she came down with a blood infection that she just couldn’t fight. She passed away a few weeks later. She brought us so much joy and always seemed to be happy during her short life. We went on to have another girl whom we named Hope and two years later had our son.
My illness has cycled quite a bit over the years. If I miss even an hour or two of sleep I can barely function for the next few days. I feel weak and exhausted, the brain fog sets in and I ache all over. Since I’ve entered perimenopause I have had new sleep problems to deal with. I can fall asleep, but I wake up very early. I can count on one hand in the past year and a half getting a good night sleep.
Sometimes I feel myself getting down and comparing myself to others which is hard for me to deal with at times. During these times I try to remember all the things for which I am grateful. I also like encouraging others. These things put me in a better frame of mind. I also love connecting with other people online when I can’t get out of the house. Just recently I started listening to podcasts. When I have days that I’m too tired to read these come in really handy.
My family and my faith have gotten me through many difficult things. I don’t think I would be in the place I am today without them. My circumstances also gave me a new passion and purpose of helping others who are going through difficult times. I hope my blog My Fruitful Home does just that. I also blog about my hobbies: crafting and decorating. These help remind me that I can still be creative despite a chronic illness. If you are struggling with illness or any other kind of hardship I encourage you to reach out to others, be kind to yourself, and remember you still have great worth.
Tanya has had fibromyalgia and chronic fatigue syndrome for over twenty years. She created her blog for people dealing with any chronic illness who is looking for some encouragement, inspiration, and support. She love crafts, making new foods, and my family. The kinds of things on her blog will be fairly simple because she knows we have limited energy, but still want to create something beautiful. She will also have helpful tips for raising a family while living with a chronic illness.
It’s so interesting to me how stress impacts our bodies and can trigger chronic illnesses in so many of our stories. Losing a child is a huge stressor and Tanya’s post is making me reflect on the loss of our daughter Maya and trying to figure out if my journey with Rheumatoid Arthritis started then and I didn’t realize it. I love that Tanya is finding ways to still do the things she loves like crafting and cooking and modifying them for her energy levels. Finding ways to cope with chronic illness is so important.
About Be Our Guest Fridays!
Be Our Guest Fridays is a weekly feature where I feature guest posts by my favorite bloggers and authors. I started this feature to encourage and support the bloggers I love and the authors I want you to know. I am excited to share with you these creative and inspiring individuals. If you’d like to be a guest blogger, leave me a comment on this post and I’ll be in touch.
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How did your journey with chronic illness begin? What are the factors that you think triggered your illness? How do you cope with chronic illness? Let’s learn and share with each other.