Juggling Life with RA: Time Management and Saying No

  • Appointment with family doctor regarding UTI caused by suppressed immune system, including travel and wait time: 1 hour 15 minutes

    Appointment with rheumatologist for regular checkup, including travel and wait time: 2.5 hours

    Physical therapy for shoulder injury, including travel time: 1.5 hours.

    Mandatory Rest Period to manage fatigue and energy issues: 1-1.5 hours a day

    Monitoring of general well-being, pain and energy levels: constant

    Assessment and adjustment of activities and medication to make sure I function as well as possible: constant

    Time to myself: priceless.


    I have two jobs. One is being a writer and it gets me a paycheck. The other is having a chronic illness and no one sends me a check for that. Despite it being an unpaid position, it still takes up as much time - or more - as my regular job. The litany above is just a sampling of what happens in a typical week and I'm sure that anyone who lives with rheumatoid arthritis would be able to add their own tasks to the list.

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    Working for a chronic illness is no picnic. My "employer" in this job is a candidate for a starring role in the movie Horrible Bosses. If I don't do every single thing my RA requires, I get disciplined and I'm not talking about a warning letter. No, instead it sideswipes me, makes me sit still for days while I heal as everything slows down because the flare means I can do much less than normal. As for rescheduling a doctor's appointment because the paying job gets busy? Forget about it - being squeezed into the schedule means you can add at least another couple of hours to the experience, so you might as well go. At least twitching like mad with the stress in the waiting room makes other people give you a wide berth, just in case you're about to explode.


    Quitting, alas, is not an option - an RA job is for life, so despite the frustration, you have to find a way to live with it. So what do you do?


    Manage Your Energy

    Managing your energy is an important tool in living well with RA and sooner or later, anyone who lives with a chronic illness finds out about the Spoon Theory. Keeping a mental eye on your energy and pain levels become second nature and you learn the signs that mean you should stop right this very instant or bear the consequences. This is where you build the foundation of your life, because without energy, everything else falls like a house of cards.


    Time Management

    Time management is also an essential tool. It requires you to take a step back and look at the big picture, to take a clear and realistic look at your day or your week - and sometimes your life - and weigh it against what you know you can do. It also means you need to redefine the idea of what absolutely has to be done. As you look at the never-ending list that contains your life, imagine what would happen if you suddenly weren't able to attend to it. Would the world end? Would your life fall apart? What items are truly essential?


    Juggling the multitude of balls that make up a life with a chronic illness is not for the faint of heart, but it can be done. After you spend some time thinking, you have to decide what's important enough that you will spend your precious energy on it and then act accordingly. Acting on this decision can mean using time management tips and tricks that can save you time and energy, but it also needs something else. Something big that none of us like to do: setting boundaries. Really firm boundaries.


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    Saying No

    We live in a world that is increasingly about saying yes to all requests, even when it means answering email at midnight, burning your candle at both ends to make sure you'll always deliver. Living this way, always being 'on' is a recipe for disaster for anyone, but especially so when you have a chronic illness. When you crash - and trust me, you will crash - it costs you more in terms of loss of energy, health and days spent healing, takes you longer to get back up on your feet and let's face it, nobody wants to live with the pain of a flare. The first step to get control of your life involves knowing enough about yourself and what is essential to your health and happiness that you are comfortable saying no. This is worth spending time and thought on - you can't expect other people to respect your boundaries if you do not respect them yourself.


    Learning the job of living with having a chronic illness takes time and effort, but when you do, you are paid not in tangibles like a paycheck, but in the ability to live your life. And that is worth far more than money.


    Do you have tips on how to manage life with chronic illness? Do you want to add other tasks to the RA job description? Please share them in the comment section!



    Lene is the author of the award-winning blog The Seated View

Published On: June 08, 2011