Word Weaving

I'm a writer it seems. One of my earliest memories is of standing triumphantly before the brilliant bright white wall of my teacher's classroom, aged four or five, having just completed a masterpiece of image and text with a felt tip pen. When my teacher enquired why I had decided to express myself on the walls I calmly showed her the three allocated pieces of paper already used-up and explained that the wall was much like a large piece of white paper onto which I had 'expanded'. The fact that I didn't get into trouble - my thought process being so genuine- but instead was encouraged with more pens and paper felt like a turning point in my life, the moment I created and was rewarded, when I first became a writer.

But writing is tough. So many times I've sat before a blank page or my PC staring into space awaiting a visit from inspiration. Looking into the air for the words that would do justice to the colourful pictures in my head:

"The story I am writing exists, written in absolutely perfect fashion, some place, in the air. All I must do is find it, and copy it." Jules Renard

Finding 'it' is a tricky business. Finding the thing that triggers a memory, emotion, sensation or the single line that will prove to be the building block of a story or verse - a snippet of dialogue, a funny visual composition to spark the imagination.

They say: write what you know. But what if you haven't made up your mind about reality yet? What if you struggle to piece together the memories which evade you only to be hurriedly stitched together like mismatched carpet samples?

Perhaps it should instead be: write who you know, that might be easier. I can find myself hiding in the left elbow of many an invented character along with ex-boyfriends, disastrous crushes, co-workers and people I've met on the bus. But how do you corral the voices all together into something that makes sense to ensure that they don't all jump up and run riot - overpowering you? Therein lies the difficulty.

Still, I've never been a quitter. A procrastinator, maybe...

You don't know what you've got 'til it's gone

Adrenal Glands. Honestly, before I became ill I had next to no idea that these things even existed inside my body. I suppose I must have once wondered where adrenalin came from but, in that slightly arrogant manner of the healthy and well I put it down to 'these things just work like magic'. I remember what it felt like when I was 'well', that sense of having inexhaustible energy supplies, when I could run full-pelt and have a busy day, stay up late and then just sleep for a few hours before doing it all over again.

Those days are gone! Replaced with remembering to take medications on time and with food whilst managing food allergies I never had before, pacing myself so that I don't crash every evening at 6pm, being mindful of my stress levels and not 'overdoing it' too much to conserve my strength and popping painkillers to deal with the muscle aches. A good day for me now consists of: remembering to take my medication, taking it on time, not experiencing too many side effects of chronic fatigue and getting some decent sleep. Now perhaps a life of lounging on the sofa and early nights doesn't sound too bad - if you are of a certain age - but bearing in mind that I was diagnosed with Addison's Disease at 24 you can imagine the period of shock and readjustment. 

At 24 I was on the periphery of beginning a career having just graduated from University and living independently for the first time. At 24 I was in the process of deciding 'what next', whether to save some money and take time out to travel -having never had a Gap year- or to enter vocational training or to apply for a Masters course. In some ways these plans were put on hold by the sudden appearance of an illness I'd never heard of, in other ways I've managed to do more in spite of my circumstances. But it has been tough. Sure, I've worked hard, met some brilliant (and some less helpful) people, socialised until the early hours, travelled for work, been abseiling, survived surgery... but the fear of 'what if it all goes wrong and I end up in a coma' is always there and the cost to my body has been something that I really haven't considered enough.

Now I'm 30 and I think that it is only now that I am beginning to grasp what this change has meant and still means for my life as I navigate towards the future hurdles of having kids and avoiding additional health problems like diabetes.

One positive is that my body and I aren't at war any more. It may frustrate me when it refuses to be predictable or controlled, it may frighten me when the disease hits from nowhere but, it is the only one I have and despite its quirks I think the human body is a beautiful and marvellous thing. It is just a shame that it takes something so fundamental to stop working before we notice.

The first day of the rest of my life?

So what do you do when the 9 to 5 existence you have been so desperate to exit becomes a thing of the past? I guess I'm about to find out...

I finally decided that I had to make a change in my life and shake things up. Managing a chronic illness doesn't seem to be getting any easier over time and the afternoons are the worst for me. The high stress environment of a corporate 'for profit' office - open plan and full of vulgar chatter - and the pressure of an ever expanding workload in a struggling industry hasn't helped me and ultimately proved too much, so after seven years in publishing I just took a deep breath, steadied my nerves and walked away.

The decision wasn't a particularly easy one to make. I have given up a comfortable £30k full-time and full-on occupation and all the trappings that went with it: indulgently priced cocktails with friends, the daily commute, a work laptop, international travel and a career track... but the numerous attempts at drawing up a pros and cons list tell me that leaving this lifestyle is better for me in the long run.

After a relocation to a new city (where the cost of living is significantly lower) to be with my partner (who will be partly supporting me), I've taken a part-time job in an educational institution. I'll be going from 35 minimum to 18 hours a week and picking and choosing the working hours that make most sense to me and my body. This is going to take some definite adjustment!

But it seems I'm not alone. I've noticed that even despite really tough economic times in the UK a wave of my friends all aged in their late twenties and early thirties are similarly choosing to turn their backs on the stability of full time employment and the daily grind in favour of experimenting with flexible hours, working from home, returning to study and freelance work. It is their braveness that made me feel able to try something different myself.

And now? Well, today was day one of flexible working and I'm home before the fatigue hits to write this with a cup of tea on the sofa.

I think the challenge for me will be to recognise that my past self - all driven and ambitious to achieve - needs to relax into a different set of circumstances and an altered set of priorities now.