My post yesterday has made me think about everything I'm doing, especially how I'm actually going to get my message out into the world. I feel overwhelmed by how much there is to do; but when I examined that closer I realised that beneath the overwhelm is a huge amount of frustration because I know what I need to do; but because of the ME/CFS severely limiting my time and energy it means that I can only do a fraction of the things I want to in a day.
How do you decide what you spend your time on? How do you prioritise when so much feels like it needs to be done now and so many tasks are tied together - I can spend all my time creating my virtual parties and holidays; but if I'm not marketing nobody will know to be able to enjoy them. I can spend time promoting; but then I need content too.
I also enjoy the things I'm doing and don't like to stop when I feel the fatigue and aches kick in. I want to keep going because I'm having fun, I don't like my body dictating how much I can do, when I don't feel like I'm doing anything that intense. Running a marathon - that's exhausting! Sitting in front of a computer, that shouldn't leave me exhausted.
I've been watching the closing ceremony of the Paralympics and have been amazed at the incredible achievments - I get scared going up a curb in my wheelchair, so seeing what others do is breath-taking. The question that came up for me is, why can I look completely healthy and "normal" yet I can't even get to the stadium, let alone do anything remotely sporty. How can an invisible illness limit me in so many ways when there are visible illnesses that still allow people to do Herculean tasks?
People tell me that no matter how well I might/will be, there will always be frustrations over how much I can fit into a day. "Even healthy people can't do it all." I find it rather annoying when they say that - I know it's true; but I also feel like I don't get my fair share of the day because so much of it is taken up with resting and sleeping. I'd love to be able to work for longer than a few hours in the morning, because I love what I do; but I physically can't and that sucks.
I know there are other people out there running businesses and juggling other things like full time jobs and families; but those are things they chose, I didn't choose to be ill and I just know I could achieve so much more if it was well and full of energy, with the same abilities and number of hours in the day, that's all I want and I don't think that should be too much to ask for.
This post isn't meant to be a poor me, life is so tough post. I know that compared to where I was ten years ago, unable to concentrate to read or listen to music, let alone write or use a computer, now I'm doing so well. I just wish I could do more.
It's made me realise that like with everything else I'm going to have to adapt the whole marketing game to meet my needs, adapt it to fit what I can do right now and trust that it's enough. That's hard to do when the business world is constantly saying you have to do things a certain way to be successfull, that you must be working every hour of the day to achieve your goals, that anything less than all you have just isn't enough. As with everything in my life so far, I'm going to find my own path, follow my heart and trust that it's going to lead me to where I'm meant to be.
What are your experiences of doing things differently because you have to rather than because you want to? I'd love to hear how you cope with the emotions that brings up.
I'm off to bed, ready to start the week on my terms.
Claire Wade is the winner of the Good Housekeeping Novel Competition and author of The Choice. She was bed bound for six years with severe ME, trapped in a body that wouldn't do what she wanted. She now writes about people who want to break free from the constraints of their lives, a subject she's deeply familiar with.
I'm an author, disability activist, winner of the Good Housekeeping First Novel Competition and The EABA for Fiction 2020 and founder of Authors with Disabilities and Chronic Illnesses (ADCI).
The Choice is available from:
Title: The Choice
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