Tuesday 14 June 2016
Inside The Author:How I Juggle Chronic Illness & Writing
HOW I JUGGLE CHRONIC ILLNESS & WRITING
I have several chronic conditions and they’re the reason why I pursued writing as a career. I thought that an interesting piece for this blog book tour would be how I manage to juggle being chronically ill while still managing to write. As with most chronic conditions, I have good days and bad days. I even have some bloody awful days. I spend time at the hospital for both appointments and inpatient stays. I see numerous doctors and I will probably never be well enough to hold down a "conventional" job again.
Before I talk about how I manage to write whilst being chronically ill, I should really give you a little information on the main three conditions that affect my life. I have Type One Brittle Asthma, which is a rare form of asthma that affects only 1500 people in the UK. It causes me to have attacks daily, and I am on numerous medications to try and control it, though they’re not very good at doing that. I also have Myalgic Encephalopathy, also known as M.E. This causes me to have cognitive problems, as well as crushing fatigue and many other symptoms. Alongside those two, I have Fibromyalgia, which I'm sure you know is responsible for a lot of the chronic pain I have. On a scale of one to ten, with one being nothing and ten being the worst pain imaginable, I usually sit around a five or six daily. I take medications for all of these conditions and they have a huge impact upon my day-to-day life. I use a wheelchair 99% of the time and require round the clock care.
As I’ve said previously, being retired from my previous job at the age of nineteen on medical grounds is the reason why I became a writer. Facing a life of nothing but daytime TV and hobbies, I turned to writing as a way to fill the gaps. That was nearly fourteen years ago and I haven't looked back since. However, writing has its own trials and demands and as a disabled person, some of them I’m just unable to meet. Take this blog book tour; it is only something I could dream of doing because I am not required to travel and appear somewhere in person. Doing it online allows me to write the pieces in advance and takes into account that I can't predict how I'll be feeling tomorrow, let alone in six weeks time. Part of being chronically ill is accepting that although you WANT to do something, your body will not always ALLOW you to do so.
I love writing because it is something I can do whenever I feel I am able. I’m an indie author and work to my own schedule. There are no deadlines to meet, or at least the deadlines are flexible, and it allows me to be productive without damaging my already fragile health. I do work to my own deadlines though; I do something called a "Monthly Sticky Post" on a private journal, where I set myself four chapters every month, two for each book. At first, I tried to go for eight, not realising that I would almost never be able to reach that goal. I would struggle and find myself getting annoyed that I couldn't do something as simple as write. The constant frustration was not good for my mental health. So I made it four, and sometimes I don't even get those done. Other times, I have managed an extra four, something I call my "bonus chapters”. Only once have I gone further than that and managed to do twelve chapters, six of each book, in a two week period.
I am no longer able to write by hand; the Fibromyalgia and M.E have caused weakness and muscle cramps in my hands that mean I can't grip a pen for anything more than a signature. To overcome this, I type my books. There was a time in the early years of my career where I would hand write each chapter and then type it up and edit it as I went. However, I do like being able to write anywhere, and so I brought a laptop, and I recently purchased a tablet that has a large enough screen for me to still type with two hands. This means that when I go into hospital, I can take my notes and my tablet and have everything there for me in case I feel well enough, or am struck my the lighting of inspiration.
I manage my writing alongside my conditions quite well, although I do find it frustrating when I'm too ill to write and I get inspired. It is not unheard of for me to dictate a note to myself to do something with at a later date. Thankfully, this is the age of smart phone, apps, email and many other modern inventions that allow someone like me to work when they are able, and sometimes even when they're not. It's all about finding the balance and making it work. I know that even though I may not be able to do everything I used to be able to do, I will always be a writer, and I will keep writing until I run out of ideas!
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