I’ve been wanting to write this post for a couple of weeks but each time I start to write, I stop. I worry that if I write it, it will alienate me from you. I have been blogging about fibromyalgia ever since I got my fibromyalgia diagnosis in 2013. Recently, though, I’ve struggled to write about it.
The reason is that I am starting to feel disconnected from my fibromyalgia diagnosis. And, it scares me to write that. It’s been part of my life for so long. But, I’m beginning to feel like it doesn’t fit anymore.
my fibromyalgia diagnosis
For anyone who doesn’t know my story, I was diagnosed with fibromyalgia in 2013. This diagnosis came after two years of suffering from symptoms and being told that there was nothing wrong. My fibromyalgia diagnosis was like a lightbulb moment. Suddenly, everything made sense!
I was content knowing that I finally had an answer to my problems. I put my focus into improving my life with fibromyalgia and learning how to live with it. Then things changed for me. I started to get new symptoms.
Learning I had Lyme Disease
My health deteriorated to the point where I was bedbound by the autumn of 2014. I was suffering from horrific fatigue, I felt so ill and flu-like, plus I had an array of other symptoms. My life changed completely and I lost my independence.
Long-story-short, I eventually found out that I had Lyme Disease in September 2016. Last year, in October 2017, I had stem cell treatment at Infusio, Frankfurt. This treatment was to repair the damage caused to my body from years of living with Lyme Disease.
How stem cells have helped my pain
What I didn’t count on, was just how quickly this treatment would help to ease my fibromyalgia pain. For the past few weeks, I have felt very disconnected from my fibromyalgia diagnosis.
I am 10-weeks post-treatment and recently my all-over, constant, draining fibromyalgia pain has not been present. Sometimes, I am not in any pain at all.
That’s not to say I am not completely free from pain, though. I do still experience pain, but it tends to be localised, it changes in location and it’s not there all of the time. This fits more with Lyme Disease.
I am sure as I go through healing I will continue to experience pain. But, the change in how my pain feels has been incredible.
However, this change has made me feel distanced from my fibromyalgia diagnosis. How can I say I have fibromyalgia if I don’t experience the defining feature of the condition?
Feeling a disconnect with my blog
For me, this is obviously a massive positive. But, it’s also strange. I’ve built up a blog that revolves around writing about chronic pain and fibromyalgia. And, I don’t know what to do going forward. At the moment, I feel disconnected from this blog too.
I worry that people won’t take me seriously if I write about fibromyalgia if I no longer fit that diagnosis myself. I worry that people will no longer be able to relate to me and what I write. I worry people will decide I never had fibromyalgia in the first place (since we are told it is a life-long condition by doctors) and therefore I am in no place to be writing about it.
I realised though, that, at the end of the day this is my blog. It’s up to me what I write about and it’s up to you to decide whether you want to read it. Though I feel distanced from fibromyalgia right now, I am still sick and recovering from Lyme Disease (and the CFS it has caused).
I, therefore, still have a lot to write and share about chronic illness. And, I will continue to do so. But what about fibromyalgia?
Where I see my blog going in 2018
The truth is, I’m not sure if I will want to continue to write specifically about fibro. I think the thing about my blog is it revolves around my life. It will continue to grow and evolve as much as I do. My life has changed so much since the day I started writing. And, so has this blog.
I feel like I have backed my blog up into a niche topic and, in some ways, this has quashed my creativity. Going forward, I can see what I write about changing. I may continue to share helpful information about living with chronic pain if I have something worth saying. But, it might be something entirely different.
Right now, I honestly don’t know. All I know is that I will only be writing about things I feel passionate about. I want to write enthusiastically and share my thoughts without worrying about whether it fits into a specific niche.
I will continue to write honestly
Whatever I write, the one thing I can promise is that I will continue to share my honest thoughts. Honesty has always been at the forefront of my writing. I, therefore, felt I needed to share how I’m feeling at the moment with you.
I’ve found it hard to put into words and I apologise this post has been a bit rambly. But, I feel it would be weird to move forward with my writing without sharing this.
Have you ever felt disconnected from your diagnosis? What are your thoughts? I’d love to have a discussion about this with you in the comments.
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