A few weeks ago my niece asked me what I had been up to and I told her that I had been working on a secret project. As she is five and loves anything 'secret', she was very intrigued and told me to whisper it to her. Trouble is, we were actually on FaceTime with six other people . . . So I let the secret out the bag to all my family at once.
Well I am so happy to say that my secret is my new ebook Living well with Fibromyalgia: a simple guide of health and lifestyle measures for those with chronic illness. It's been a project bubbling away for months, if not years, with scribbled notes, posting some bits and pieces on my blog and some on my Instagram page too.
I'm so excited that it has all come together to give those living with fibromyalgia a new resource with all the things that I wish I had known about when I was first diagnosed and then later as I tried to improve my health. I really hope that it helps others live well with fibromyalgia too.
How to live with fibromyalgia
As a 20-something newly diagnosed with fibromyalgia, I was totally overwhelmed managing my healthcare. I felt as though I needed a degree in how to be a patient! I'm going to guess that many others feel this way too. I didn't know anyone with fibromyalgia to ask for advice, or discover the amazingly supportive chronic illness community on Instagram for some time.
I spent hours googling away to try and find resources on living with fibromyalgia to begin with, but the type of advice I wanted seemed rather elusive. There are some great associations with info on symptoms, diagnosis and pharmacological treatments, which are so helpful. For me though, I wanted a bit more help with the practical aspects of managing medical care and lifestyle measures to try out.
Over the years, Living well with Fibromyalgia became an idea bubbling away in the back of my mind as a way to help others. I had tons of little 'oh!!!' moments when I figured out the best paperwork to take to the doctors (and was once told I deserved a gold star for the documents I had brought along!), or discovered a great resource such as The Mighty. I hope that the suggestions in the book are both helpful in a practical sense, but also open you up to the brilliant communities out there that can offer friendship and support.
The main sections of the book
The content of the book mostly came about while sitting on trains after my medical appointments! I was fortunate to receive good medical care, but often felt as though there were certain aspects of managing my fibromyalgia missing from my consultations. I often think of this as the 'stuff around the edges', not medication or tests, but the practicalities of being a patient who wants to feel as good as they can.
As well as giving a little of my story, this book serves as a guide for aspects of managing your medical care (including how to find a good doctor to begin with!) with practical tips and tricks I have learnt along the way as well as lifestyle resources and how to find community support.
The three main sections, with lots of chapters in each, are:
- Practical tips on managing medical appointments
- 4 healthcare professionals to consider seeing
- Lifestyle measures
And the pictures? Well there aren't too many as I had heard horror stories of how glitchy kindle can be with them, but I knew I had to include my cat watching me take an Epsom salt bath!
What do I mean by lifestyle measures? Well I think it can mean so many different things to different people. For some it is moving towards eating a healthier diet, or for others it can mean getting into gardening, crochet or starting a blog! Anything that makes you feel more rested, happy and well.
When some doctors or healthcare professionals suggested I try 'lifestyle measures' though I had no idea where to start. There seemed so many possibilities! In the book I give suggestions for lots of things to try out - you may find that you love meditation, or perhaps it's not for you but keeping a gratitude journal is. I always find it best to keep an open-mind as to what you will enjoy - being imaginative and testing things out can also be really fun!
Finding a fibro friend
I knew this had to have it's own chapter in the book! If nothing else, I hope the book feels comforting to those that feel alone living with fibromyalgia, and that people know that there is so much friendship and support out there.
The chronic illness community on Instagram, Facebook and in-person groups always amazes me, and the kindness people show is so positive and uplifting. Sharing good moments and the more difficult with people who 'get it' really makes such a difference. It's definitely a central aspect of how I live well with fibromyalgia!
So that's Living well with fibromyalgia - my now not-secret project that I hope people find helpful for their health journey. I'm officially launching it today on May 12 as it is Fibromyalgia Awareness Day. Now I'm off for a rest before I start plotting and planning my next book!!
Get your copy of the ebook!
Living well with Fibromyalgia (US link)
Living well with Fibromyalgia (UK link)
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Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.