Spoonie Writer: Writing On Bad Days

SPOONIE WRITER: WRITING ON BAD DAYS

One thing you learn very quickly as a spoonie is that you will have bad days. You will have days when everything you planned to get done, just can not happen. You will have days when you might be able to do a little, but it won't add up to much overall. I mean you can have good days too, you can have days when everything seems to come together perfectly and you manage to get everything done, and then some, but today I wanted to focus on the working and writing on those bad days.

Now I want to make it clear that you should always listen to your body, if you need to rest and take the time off, then do it. Don't question whether you've earned it or not, because you don't have to earn rest, but just take time to recharge and get yourself into a better position. When I talk about writing on bad days I mean the ones when you can just about manage, not the ones that have you wondering if it's bad enough to head to the hospital or the like. On those worse days, you can't do a thing, and that's okay.

I recently, as in the last six months or so, have been hit with possibly new diagnoses and that has led to me having more bad days, or at least more days when I question if doing work is the thing I should be focusing on. I've had a lot more of the worst days too when all I can do is exist and hope that's enough. It's been a massive change to what I saw my life as before with mostly running on an even keel. I would have difficult days but not really bad days, and now it feels like all I'm having are the difficult, the bad, the very bad, and the worst. It's something that takes a lot of getting used to and adaption. I'm trying to find my feet as it were, and still struggling to get there.

But that's why I wanted to do this piece, because too much of the time, the focus is on when you're settled into a routine with your conditions and are finding a way to balance. I had that. I had my balance where I did a few things every day and always seemed to manage to function, albeit while resting, the rest of the day. Now though, it feels like I'm having to find a new normal and a new way of doing things, and I'm kinda flailing around unable to get my feet on the ground while I search for a way forward.

So how do I manage? Well, I've been lucky in that I've had a long time to adapt to everything else in my life, and have worked out a way of working already that allowed me to continue with that horrible balancing act that is the chronically ill and/or disabled life. It was more about finding my new limits and working out exactly what I could manage now that everything had changed again. It's one of the parts of the chronic ill and disabled life that you learn to see coming, and that is the constant change, the new symptoms, the new limits, the change in this way and that, and then learning how to adapt, how to make it so you can do the things you want to do without also putting yourself in hospital or a flare, or knocking yourself out for a time.

I've managed to spread out my work even more than I used to. Now I do things in hour chunks. At the moment I'm awaiting a new cushion for my wheelchair so I only have about an hour before it starts to get too uncomfortable and painful, and then I have to transfer to bed for a bit, and then give myself some time, before going back into that next chunk. This works for me, but I know that I've been lucky to have already found a way for my body to work with me when doing the author life. If you don't have that, do not be afraid to do some trial and error and find a way that works for you, and then slowly, ever so slowly, start to implement it.

At the end of the day, you are the one who knows yourself, and your conditions/disability best. You can be the only one to decide what too much is, what a bad day is, what a worst day is, and you just have to keep going at your own pace and working within your own limits. There's no race to the finish line. It takes as long as it takes, and that's okay!

Good luck! Any questions? Lemme know in the comments!

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