Thank you so much for allowing me to share my story. Truly appreciate everything you’re doing for us with Fibromyalgia!
Opening up about your experience with Fibromyalgia is very courageous and inspiring to many people.
I really believe that your work brings hope to others and raises awareness.
I think I should have known more. I should have asked the doctors earlier whether I had Fibromyalgia or other similar diseases, like ME/CFS.
I really do respect your opinion that educating ourselves is key and that patients with Fibromyalgia or other diseases should never give up hope, even when it’s hard. They must keep looking for treatments.
As a woman, I always wanted to have children, however after Fibromyalgia hit, as you know, the pain becomes a burden.
Once I went to a Fibromyalgia Community Forum in Tokyo. They have people there that suffer from Fibromyalgia, ME/CFS, and other diseases. There was about 25 people there, so not a large group. They were in their 30’s to early 50’s. I heard 5 people in their 20-30’s (married, single and no children) saying that when having Fibro worries them the most, is after giving birth and raising a child.
My family and I worry about how my condition will get. I don’t have anybody around me that suffers from Fibromyalgia to talk to about the changes in your condition after giving birth and raising a child.
I worry that I might move around.
In Japan, Fibromyalgia is not yet specified as an incurable disease from the Government and as a result, you don’t get much help from the health insurance.
But after I read you blog, It really made me change my mind about things that I never knew about.
Nobody can predict much about the future.
I’m getting old so I might need to freeze my eggs now, in order to have a child. This might be my new task!
Your blog is eye opening and I believe that many, many people around the globe feel that too.
Have a nice day,
Hi, I’m Ellie.
You may remember me from the other day when my story was published. Little over a week ago, Fibro Ramblings got in touch with me and asked if I would be interested in writing an article about my health journey. I had just recently set up an Instagram page as my own day to day ramblings. This was a first for me, sitting down and reflecting over the past years and the journey I’ve been on along the way. Immediately I was thrilled by the idea and got straight onto it. As soon as I finished my first paragraph, I noticed the one thing I did not expect. How therapeutic it was. I’ve got this story attached to my life, yet I’ve never properly told it. It felt like a weight lifted off my shoulders. Like I was giving myself a way of truly explaining myself. When friends or family have asked me about my health journey, there is just so much to tell them. This means that the general picture is lost in the process. Even my finished article holds less than half the information about tests, operations, etc. There is just that much to tell. So, by writing an outline of my life, someone is able to get a much better understanding of who I am. Once I had finished writing, I stopped to read over what I had put down. I think I must have reread it at least 3 times. It felt like I was standing, looking at myself in a mirror. But I wasn’t looking at the imperfections. For the first time I could truly appreciate how my health, and the continuous journey I’ve been on, has made me the strong, loving, positive person I am today. With my current fight in my health journey being the frustration of not having had a full colonoscopy, even after the findings in 2018’s operation, I want to get one done. But the idea scares me, due to knowing people who found it a very painful process. Though, having read my own story back. I have been reminded of who I am. “For God has not given us a spirit of fear, but of power and of love and of a sound mind.” (2 Timothy 1:7). I will do what is best for me. But now I have my perspective back, I feel I am of ‘sound mind’, due to my own story. I would encourage everyone, chronic illness or not, who is facing a tough time to take a moment to reflect on your own story. Write it down, whether to publicly share your story or not. Be reminded of who you are and what you’ve been through. Just remember not to look at the imperfections, but at the person you have become along the way.