Some days I have to adjust my business on short notice, like yesterday. I had planned to do a lot of things but ended up doing only a few. The reason is that I’m living with a couple of chronic pain issues and fatigue. I’m hypermobile, which has led to a number of problems, like herniated disks, and osteoarthritis. I’ve had a number of surgeries for these things, but it can’t be fixed. I’m on daily painkillers but on some days my regular meds aren’t enough and I have a nasty flare-up.
I’m telling you this because I may have to re-schedule your appointment or a live event on short notice, and I want you to know why, without trying to make it ‘pretty’.
On a normal day, I do a lot of different things, like art, readings, coaching, writing, radio, podcasts, videos etc. But I do them in short spurts, so I don’t wear myself out completely. On a flare-up day, I have to adjust even more to my energy levels and reduce my workload.
When I have a flare-up I sleep very little, so I get even more tired, and I spend the day (or days) in more pain than usual. My brain doesn’t work properly because of the fatigue, and my body doesn’t want to do certain things, like write longer pieces. I don’t do appointments, live events, or videos on those days. I have to cut the to-do list and only do what’s absolutely necessary, like taking Bonzo outside when I’m home alone. I may do some art and interact on social media, but other than that I relax and read. I have to take stronger meds, rest and take care of myself, or the flare-up will last longer. It took me a long time to work this out. I tried to work a full-time job for way too many years, but I’m on 100 % since January 1 this year. This means I get a monthly pension from the government because I can’t work a regular job at all.
If you push it, your body will tell you “You’ve been pushing too hard, so I’m going to slap you”. You have to adjust your workload and to-do list, and take care of yourself, so you don’t get more flare-ups and the flare-ups you do get won’t last longer than necessary.
I decided to do a video anyway today, to show you that it is possible to run a business that accommodates your needs, even with a chronic illness. That it is possible to go for what you want, even if you’re living with a challenge like a chronic diagnosis or a disability. It doesn’t have to mean that you give up, but you have to adjust your life to your energy levels. There are many other examples in addition to me, like Rachel Cornell, who’s legally blind, and Jenni Prokopy, who’s living with a handful of conditions.
If you don’t have a chronic condition and you’re reading this, read Christine Miserandino’s “Spoon Theory”. It will give you some insight into what it’s like.
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