Being a writer & being chronically ill
When I started writing, it wasn't by design. As you'll all know from my guest blog post that I did about my writing path (link here) I had a lot of things that went wrong for me to find that writing was what I was meant to do. Of those things, a lot of them were health related. This piece is about what it's like being a writer while being chronically ill.
Before I can really start talking about what it's like to be both a writer and disabled with chronic conditions, I really need to explain what those conditions are, so please bear with me and read the links if you want to know more. The first and most serious condition is Type One Brittle Asthma. I was born with asthma and it turned brittle when I was seven. After over twenty years of living with this condition, I'd say that I'm as used to it as I'm ever going to be. I also have Myalgic Encephalopathy aka M.E or CFS. I was diagnosed at nineteen and am now thirty-one. M.E came into my life and turned it upside down, making what had seemed "normal" something that would never exist again. Alongside that I was diagnosed with Fibromyalgia (FMS) shortly after. Although I was only diagnosed at twenty, I have probably had the condition for most of my life. I am unable to remember a time when it didn't hurt and while that may seem sad and horrible, it's something I am used to and am able to continue my life despite that. Those are the three "big" conditions that affect my life, but I also have Vocal Cord Dysfunction (VCD), Obstructive Sleep Apnea (OSA), Vestibular Dysfunction and depression. I use a walker inside the house most of the time, and a wheelchair the rest of the time. I live in a specially adapted house and have a full time carer, who just happens to also be my best friend of nearly twenty years.
Now that that is all out of the way, I can get on with the purpose of this piece, what is it like to be a writer, whilst being chronically ill. I know a lot of people who are writers and I know a lot of people who are also chronically ill. Some of those people overlap and I also know of disabled writers. It's a profession that attracts different people from all walks of life. The stories don't care that you need oxygen to breathe. They don't care that you can't walk. They also don't care if you're in so much pain you can't sleep. They don't care about what time you arrive to work and they don't care if you don't come in for days at a time. All they care about is being told.
When I was medically retired from the workforce at nineteen and I was faced with the option of never working again, I turned to writing and have since made it my career. Being chronically ill and being a writer is something that to me makes a lot of sense. I get to work, I get to take those stories that bug me just as I am closing my eyes, and I get to bring them into the world and show people what they whisper into my ears. I write because it's something I love to do. It's something that I can't imagine not doing. While I may never be able to work a conventional job, writing, despite its demands, does not reject me the way an employer would. Who wants to hire someone who spends five days out of seven sleeping one week and doing half days the next?
Writing enables me to set my own schedule, it allows me to be productive whilst still getting the rest I need. It's a job that makes me smile, makes me think of how lucky I am to be able to do this. It doesn't always pay the bills, but it does mean that when people say "so what do you do?" I don't have to reply "not much!" Some weeks I will write and write and feel like I have to learn to grow two more hands so I can type faster. Other weeks, my health will stop me from being able to do that and it sucks, but it's part of life when you have a chronic illness.
Part of life with a chronic illness means that you have to be careful where you spend your energy. A good way to explain this is by using the Spoon Theory by Christine Miserandino. Some days I have an abundance of spoons that allow me to pretty much live in what I call the "normal" but what you would probably refer to as "pretty damn sick". That means that I can write, or read or do uni work. Other days my spoons will be moderate and I'll be what people call "even damn sicker" and then I'll have to be careful about which tasks I choose to do, on those days writing and uni work still get done, but sometimes it's from the comfort of bed. The only other times are when my spoons are low and am what people call "almost dead practically" and I don't really do anything other than sleep, sleep and sleep some more. Those days the only writing that gets done is the writing I do in my dreams, which is a shame because I'm pretty good at having whacked out dreams!
That is another reason why I chose to go indie and set up the Bug Books label, it allowed me to work at my own pace, and not have to sweat too much about deadlines. It does have it's downsides in that I have a LOT of promo stuff to do and find that I struggle with it. However, I have some money in the budget to hire an assistant for when things get too much. That's another part of being chronically ill, you have to be willing to delegate. My best friend, B became my carer when I got sick because she's a pretty awesome person. She's also my graphic artist and designs all my front covers. I have another friend who is employed as the editor for Bug Books and another few volunteers who work as proof readers and general stuff like that. Promotion may fall into my lap, but I also know that I could (and eventually will have to) reach out to the support system and ask for help. Whether you are a writer, or work a conventional job, when you're chronically ill, you have to know when to ask for help. I am blessed with the support system I have. They enable me to keep mobile, whilst at the same time, support me with all the crap that comes from having multiple conditions. I know that if I need someone to come with me to the latest hospital appointment or visit me, I can ask one of them, whether they come in person or over the phone or on Skype. It's something that all people with health issues need and I am very lucky to have.
The other good thing is the technology these days, when I first started writing, it was on a PC. I eventually got a laptop and could use that away from home, in hospital stays and on holiday for example. It was hard though because it was heavy and sometimes it just took too much out of me. I still use a PC when I'm at home, but I also have a 10.1 inch tablet that I was able to get earlier this year. It meant that I was able to write pretty much anywhere so long as I had my work bag with me. I wrote in Starbucks, in soft play areas and even in bed when the spoons were too low. It has allowed me to write both on holiday and in the hospital. Considering that the Fibromyalgia stops me from being able to hold a pen and write more than a couple of words at a time, being able to type on a small, light, portable tablet is excellent.
So, as someone who has been chronically ill more than she has been healthy, being able to do a job where you're able to work around the hurdles that ill health put up is better than you can imagine. I love writing, I have so many stories to tell and plan to continue telling them until I run out of space on my computer - even then I'll probably continue! Using a wheelchair or a walker, using a computer or a tablet, it doesn't matter to me because this is what I was supposed to do. Working around the low spoon days and still accomplishing what you set out to do, means more to me than having a job that works a nine to five shift. Although it was because of being diagnosed with M.E and Fibromyalgia, that doesn't change the fact that my conditions don't define who I am. I am a writer, and I love it.
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