One of the things I’ve found most challenging with having a chronic illness is the fatigue and brain fog.  I’ve always liked being organised. I like nothing more than a good list I can cross stuff off.  I like to set a heavy schedule (usually unachievable) just to push myself.  I can count on one hand the number of times I complete my weekly to do list!  Rheumatoid arthritis has other ideas.  Frequent poor sleep, chronic pain, fatigue and brain fog all characterise the condition and mean that while my spirit may be willing often my body is not.  This makes it hard to plan.  I might be okay one day and need to spend the following day in bed.  So how do you manage when you never know if you’re going to be able to do what you need to do? You have to loosen up and not be too attached to sticking to a strict schedule.  You also need to decide what is a priority and what can wait.  Priority items are things like payroll, invoicing, tax lodgements.  Most other things can wait if they need to.  You also get pretty good at deciding what is completely unnecessary and a waste of your energy. 

If I have big appointments or meetings I need to plan rest time before and after.  Anyone familiar with spoonies will know what I’m talking about.  Energy conservation can be a pain but without it I doubt I’d be able to keep working.  As much as managing the physical demands, just as vital for me has been making the mental adjustment that I can’t do everything I want when I want!  I used to get very angry about the limitations but I soon realised that Anger also requires energy and I wasn’t any happier when venting about life’s unfairness. Now, if I’m having a rough day I’ll ask if there’s anything that absolutely can’t wait.  If there is, I’ll do that and then go back to bed or head to the couch.  If I’m not too bad I might set a really low bar like just picking one thing off my list.  If I still feel okay I’ll do another.  I also try to make Thursday and Friday's reasonably light if I can as the second half of the week is more of a struggle because of my medication schedule.  Weekends at the moment are about rest.  I might do a little washing or some art if I’m up to it but I don’t stress if I need a couple of naps.  I’ve learnt that even doing small amounts, eliminating anything unnecessary and not stressing about things I can’t control means that I can still work.  I may be living life in the slow lane but I’m still moving forward!

I hope you’re moving forward at whatever pace suits you!

Till next time,

Sarah-Jane

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