EDITORIAL BOARDCheryl Koehn
RA = Frustration. It is a feeling that takes control and, for me, many parts of living with RA caused this to build:
Uncertainty of what pain levels each day would bring.
Annoyance over yet another canceled plan and people around me often thinking I was moody when, really, I was in the middle of a flare up.
Frustration began overtaking my everyday life and so I wanted to take back control – I found there are definitely things I could do to overcome it!
At the center of managing anything in my life, including RA, is mindfulness. Finding the center of myself at the beginning of each day –while I walk my dog or make coffee –has always helped me.
In my head and heart, I try to find calm and visualize myself doing the things I both need and want to do each day.
Everything I do, I do with intention. It’s my way of setting myself up for success.
At the risk of stating the obvious, planning is key. I organize my daily routine into blocks of energy that need to be managed flexibly. I like to think of mine like money in a bank, after 'spending' a bit –which I like to do both literally and metaphorically – a recharging ‘deposit' needs to be applied, to sustain the ‘balance'.
Preparing myself for the time when I can’t afford to spend any more energy makes it a bit easier to take.
Bigger tasks can also be daunting which just adds to the frustration. If this is also the case for you, try breaking them down into smaller more manageable aspects. If you tackle these bite-sized tasks every day, before you know it you’ll have conquered the mountain –and then it’s time to celebrate
Take time to acknowledge all you have accomplished while living with RA and celebrate daily victories, however big or small. And don’t just celebrate internally, but shout about it, celebrate with your family and friends.
The more people can see what these accomplishments mean to you the more they will understand how hard it must be to complete, what they probably think are, everyday tasks. Actions speak louder than words so start showing people what it means to get through the hardest times.
Share your RA with family and friends, get their support. You’ve probably been offered help in the past and brushed it off with an ‘I’m fine’ – but don’t be afraid to accept peoples’ helps.
It’s okay to ask for assistance and to help ease the pain. Remember that people may see you and think you look fine. It’s also okay to tell people you need to slow down. For example, if your friends want to go on a long dog walk, explain to them that mornings are hard for you and midday would be better.
A source of frustration living with RA for me, is it can be hard to make plans. I don’t know how I’ll feel days, weeks, or months ahead. When I have to turn down an invitation, I ask for a rain check and then I follow up when I’m feeling better. Being open and honest with your friends and family, you will find your own solutions to your frustration and a deeper understanding from those supporting you.