my magical MyStery tour...... a place for me to share, philosophise, vent, let out, what it's like to be living with MS
Hi. I’m Emily. And I have MS. MS is unpredictable. MS has a mind of it’s own. MS can strike at any time, and the plethora of things it can do include (but are not limited to) strange nerve sensations, sharp pain, fatigue, heaviness of joints, muscle spasticity, paralysis, bladder & bowel problems, blindness. When it strikes it can decide to show up in a mild form, or severe, or anything in between. It can choose to last a few moments, or forever, or anything in between. It can to go away completely, or leave some leftovers. It’s a magical mystery tour. One relapse builds upon another relapse, or in the case of primary progression, it just continues and continues… They say I have relapsing remitting. Let’s hope.
This is not a space where I’m intending to share information about MS, only MS in relation to me. There are expert specialist sites if you want to know about MS, and you can use a search engine as well as me. I’m only qualified to speak about my experience of MS. I’ve created this space so that I have a place that’s not Facebook or Twitter to log how this disease is treating me. I need a place. I thought about writing a diary. But my hands don’t like writing. I don’t know if that’s the MS, or just writing. There is so much that can’t be untangled from one thing to the other. But I decided I didn’t want to write a diary. And I don’t want to only be sharing woe is me on Facebook (which at this time of writing is becoming the norm).
And I do want to share what it’s like, I believe in sharing. Keeping things to yourself, I’ve learned, is a recipe for disaster and a pressure cooker waiting to explode. Perhaps this blog will one day be more than just a vehicle for getting me out of my hole, perhaps I’ll stop writing after blog number one.
I need to write, too, because I’m stuck. I feel trapped in stasis, not able to break out of this prison of fear and uncertainty and loneliness. Since the diagnosis I have not been able to write. I have not been able to focus. I have not been able to plan, or see what life can be. And I know that writing will unstick me. And so, I needed to create a safe place where I can write about this so that I can get unstuck in the other areas of my life. I have a legacy to create, before it’s too late. I have a mission to drive forward to change this world for the better. I am not supposed to sit and cry and feel hopeless. I cannot let my mind become prey to this disease, even if I cannot control the physical manifestation of this disease.
I’m much more than MS. This place is where I’ll share about MS, so that I can be much more than MS. I am not MS and MS is not me. When I’m not moaning about how difficult MS is making living, or feeling lucky that I can walk up the stairs without any pain, I also run two businesses.
The first, I call my lifestyle business, or the job-job. At the moment, I’m working four days a week, from home (oh, how so lucky with this diagnosis that I don’t have to grapple with the morning commute!), doing what I’ve been doing for the majority of my almost 25 year career: marketing. If you’re interested, that business is here: https://curiousdecisions.com/
The second, I call my mission business. ReConnected Life® is the business I formed to share my approach to putting ourselves back together after rape, because living one day at a time, living a half-life, only just surviving, isn’t enough. I have curated the tools, techniques and resources which move beyond the conventional symptom-based approach and fill the gaps that I was so frustrated to need to figure out how to fill myself in my own recovery path. In the past, writing helped me put myself back together (you can read those blogs in ‘Desperately Hopeful: The DisConnected Years of a ReConnected Life’), and it’s because I know the power of sharing our stories that I edited ‘To Report Or Not To Report: Survivor Testimony of the (In)Justice System’ which was published just days after I received my MS diagnosis. More about ReConnected Life, and all the ways I can help other survivors, and how I have also been raising my voice in the press, on television, and in writing, is here: https://reconnected.life, and here: https://toreportornottoreport.life.
I am not prepared to let MS derail me from living my own ReConnected Life, or in helping others find their path to their own ReConnected Life. I am building my new life in my new city (Oxford) and I want to be enjoying it. Life is a magical mystery tour, mine is now a magical MyStery tour, this space will be where I make sense of that.
Thank you for reading xxx