I’ve had some new followers to this blog and it’s accompanying Facebook page recently, some of whom have been curious as to what on earth is wrong with me; after all the name implies Dystonia but a multitude of conditions get discussed. It’s a good question. So I thought I’d take a moment to write a short post reintroducing myself to you all.
I started this blog back in September 2012 after my life felt like it had been turned upside down. I’d been training as a midwife at Anglia Ruskin University Chelmsford and felt as if I was living my calling. However I was plagued by ailing health that got more and more severe.
I had to go on medical leave at the end of my first year. Despite my determination I would never return to midwifery, which to this day still breaks my heart. My body was no longer my own. I was wracked with spasms, needing a wheelchair to get about, I couldn’t even feed myself. It took months going from doctor to doctor, hospital to hospital, ambulance after ambulance until we finally met my old neurologist who finally shed some light on what was happening to me.
Initially I was diagnosed with functional Dystonia. A diagnosis that I fought against. I’d been physically abused as a teen by my father and this trauma led doctors down the functional route. Five years later my diagnosis would be changed to Generalised Dystonia. Upon my diagnosis I felt so lost. I’d moved back home, had no independence, lost my career and no one really seemed to know what Dystonia was. I made it my goal to educate myself as much as possible. So I set up this blog and it’s Facebook page as a way of connecting with others who were going through similar experiences, and as a way of raising awareness of the condition. Advocacy has become a great passion of mine.
Over the years more conditions have been diagnosed, such as Classical Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardias Syndrome, Lyme Disease Osteoarthritis and more. I’m surprised I don’t shake with the amount of medication I take. Learning how to manage all these conditions and live a full life has been hard and is still something I am trying to learn to balance. The symptoms and pain I experience in a day change hour to hour, I dislocate multiple times a day, have vocal tics, spasm, etc. It can be a minefield to manage. I’m very lucky that I now have a career as an author with books 7,8 & 9 being published this year, which gives me the freedom to write around my health and my family.
This site has become a diary of sorts. Where I can let out the awful days, whether it’s a physically bad day or an emotional bad one. Or celebrate the triumph’s with you all, which is something I try to do often. It’s a way of processing my conditions in a healthy manner while also raising awareness and supporting others. I find when I need to reflect on how far I’ve come in learning to manage my conditions through medication/physio/wheelchair/splints etc reading back through my past posts is a great aid. I can easily reflect on my progress, and see the milestones that I thought I’d never meet; such as graduation (I studied publishing instead) having children, getting my independence back through my electric wheelchair.
I’ve had this blog for coming up to eleven years now. While I hope I don’t need to add anymore conditions to it, I don’t plan on stopping posting anytime soon. I’m so grateful for the readers and friends I have made through here and for their support. Thank you.
Dystonia and Me 