Why I also live in Cyberspace

I write, but I’m not trained as a writer. I have done quite a bit of studying, so I’ve written lots of essays in my time. But they were made up of lengthy, waffly sentences lavishly scattered with far too many commas. I struggled to be concise. I did not have the knack of clearly stating what I was trying to say. I’ve never been a writer, just someone who wrote as a part of my journey through education.

Despite the blogging, I still don’t consider myself to be a writer. I’m fairly new to the blogging world. If anything, after all the information I’ve sought out about my health, I’m a researcher these days. Although the books I’ve read that prepare for post-grad’ training clearly state that if you’re intending to study for a masters degree… you have to become a writer.  *gulp* You what?

When my health first took a downward turn I was unaware of where that road would lead me. I was waiting for ‘my legs to get better’, so that I could carry on with my life as I had planned it. Albeit, in my apologetic, I’m-not-worthy kinda way. I didn’t believe in myself or my skills. Whenever I was found to be good at something I would play it down. I’m a team player in the extreme. I’ve never been good at receiving praise for doing well, because I always felt for the people I had inadvertently done better than, and how they might be feeling. I didn’t like the idea that I had been the accidental catalyst for them to feel less positive about themselves. So I pretty much took to hiding my skills.

And yes, I know I’m a wally!

No-one should have to hide, we all have our own skills and value, and it’s daft to waste them. We don’t have to be the best at something to make a difference. You never know, once you try your hand at something you may discover skills you never knew you had, and the more you practice, the more you improve…the more of a difference you can make. It doesn’t have to be about changing the outside world, it can be about making a difference to you, to your life and how you feel about yourself.

Try something that warms your heart.

I write about my experiences because for more than 12 years I have lived with a condition that I’ve learnt so much about…by myself. And each time I learnt something new I would shake my fists at the world and ask the universe why on earth no doctor ever told me these things. After all, I’ve learnt the kind of crucial information that informs me how I can live around the condition wherever possible, how to deal with un-fixable symptoms, and how seemingly random weird-shit actually does make sense within the context of what’s gone wrong inside my body. It turns out that no doctor told me because they didn’t know, either. The subject is just too unusual to be included in their general training. So you won’t be surprised to hear that I found out that a lot of fellow patients were in the same boat, and that made me very peeved indeed. All those people struggling to make sense of their own health issues with no training, no information and no support. Grrrr. Somebody needed to do something.

A few of my friends spent years trying to convince me to write a book, but I was sure that they were massively overestimating my skills. I’m not a writer, and ‘expert patient’ didn’t sound like a viable premise upon which to write about my experiences. Years of pain, and isolation from the world of work and ‘normal’ types of responsibility, had somehow reduced me to a nobody even inside my own head.

One of my friends, (hello NY bud’, you know who you are – thank-you), came over for a visit and suggested I start a blog, and after a year of faffing and questioning whether anyone would ever want to read it, I finally acquired a piece of Cyberspace for myself. Initially I summarised some research in simplified form to post as a reference for my fellow patients, because that’s what drove me to start it in the first place. Including a list of where I got the information from, so that people could wave the research papers at their own doctors if the urge took them to do so. I can’t change the world, but I can do my little bit.

Since loitering in Cyberspace, I have met other like-minded individuals, some of whom have the most amazing skills and knowledge that they kindly share. Some have set up groups, some raise funds for research, some disseminate existing and brand new research, some are fellow bloggers. Between us, perhaps we can slowly and incrementally bring some awareness to the wider world to enable quicker diagnosis, more appropriate treatment and better support for sufferers. We are doing what we can.

Here we are, all over the world but in contact at the click of a button. Magic!

Starting something new like this sets you off on a journey, but you never know quite where it’s going to take you along the way. Creating the blog meant that I started to write about my experiences. I still have a list of things I want to write about in a little notebook next to my bed. Topics which I feel were of major importance on my journey. I will write about them eventually. I’ve found it’s hard to write about something that I am still feeling emotional about. My faulty ANS makes my brain function less efficiently when under stress and particularly when I’m feeling emotional. So I write about what is clearest in my brain at the time. And the act of writing has effected some changes….

I have found that it is a wonderful process through which I now evaluate my days and experiences. I sit at the laptop and sift out the boring and the negative. I find the ups in the same places that I always did, but now the process of defining them actually amplifies the ‘up’. The silliness, the laugh-out-loud moments, the beautiful reality of our raw strong selves. The process of writing appears to have highlighted my honesty that is, surprisingly, not negative despite my circumstances. Perhaps it has just shown me what my friends have been trying to tell me.

I have found writing to be incredibly uplifting and very liberating. I am ‘me’, as I have always been, but I am no longer just ‘me’ to myself and my friends whilst remaining hidden behind a curtain of pain and dys’ behaviour tendencies to everyone else. Instead I am openly me. There’s plenty of research on the positive effects of expressive writing. (I’ve got a whole load of them saved on my hard-drive)! But nothing compares to giving it a whirl and finding out for yourself, x

Don’t let that lightbulb moment slip away, follow your inspiration.

I write here because I want to do what I can. If one person finds a bit of basic info’ and a research link that they can use, or feels a little less alone in their own symptomatic world, or gains an insight into living with a disability and still finding the positives, takes in the ice and vitamin C messages to help them avoid developing CRPS, or just has a chuckle at the silliness, then it is worth it. So very worth it. Each message of positive feedback that I receive causes a rush of emotion, it touches my heart.

I am only me, and I feel so small and frustrated at times, but then I’ll get a message from someone half-way around the world telling me that they liked what I wrote and I feel a bit bigger again. Of more value.

I’m still no writer. I use slang words, made-up words, start sentences with ‘and’ and ‘but’, and I still have a bag of spare commas to scatter about the place. But this is not a place for perfect writing. It is a place for honesty, for ‘me’-ness, for humour and for shared appreciation of a nice-cup-of-tea.

My blog is one of the two major things I have begun this year. The other is a piece of research that I hope will help to get patients’ voices heard. I am a developing researcher, who also writes, I know my place! 😉

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