After a year of hardly walking, my Rheumatologist suggested a pedometer. I had read this advice in nearly every single article about coping and getting stronger when you have autoimmune arthritis. Everyone shouts at you to get a pedometer.
After researching and deciding on the one that fit my wants and needs, I began wearing my pedometer about 12 months ago. My Garmin Vivofit sets goals for me and adjusts them automatically and I love being able to see how far I’ve gone so that I can push myself to walk a little father each day. It has been a great addition to my efforts to get stronger.
But one use we didn’t really think about is largely how I use it currently and how my husband checks in with me.
No, he can’t see my steps. But each time we go on an outing, we make a note (verbally because I remember best that way) of how many steps I’ve taken. In that verbal discussion is how I feel, how painful I am, and if I can go farther or not. We also note in the days to come how I recover from any outings and if I spend any time in bed.
Autoimmune Diseases Feel Abstract to Outsiders
This sounds tedious and it can be, but it has significantly helped my husband understand a very abstract idea of my limitations. It’s so easy to say you tired or need to rest. But by tracking my max numbers and how I feel after them, we are able to semi accurately predict how much longer I have before my body gives up. And we also know that when we are at the higher numbers, it is time to stop what we are doing.
With an autoimmune disease, there is no easy way to predict how you will feel. Ever. You can’t predict flare ups or recovery times. BUT, you can watch how you do on a daily basis and use that information to inform how you schedule and plan your days and events.
This is exactly how we do that:
As it stands currently, I max out at about 6000 steps in a day. That is a lot for me and usually means I will be in bed for a day or two after.
Because we know 6000 is my max currently, we know that when we go grocery shopping, we can make it pretty far without issues. But if we are going to a park for a beer festival, we know that I am likely to hit that number.
So, we know that a beer festival will require a slightly slower walking pace than a trip to the grocery store because it’s a marathon, not a sprint of a day. We know that every few hours we need to check my pedometer so that we have an idea of if we need to hit anything we’ve been really wanting to, or if we can continue to meander pleasantly through the crowds.
Being able to put a concrete measurement on my day may not work in every situation or even everyday. Flare ups and all those other silly factors that people who are chronically ill have to deal with are always there to put a wrench in your plans. But that number helps my husband and our friends understand what is always very intangible and abstract.
I love the spoon theory and my husband loves it. He checks in with how many spoons I have left and if I have enough to do this or that task. But when we are out and about in crowds or at events, it can be a big more challenging to think of something so abstract when, to you, the activity is probably fairly mundane and non-taxing.
Autoimmune diseases of any kind are difficult to explain. It is hard to know how to help others know your limitations. Because of the nature of the illnesses, the unpredictableness of it all, and the fluid and moving definitions of what “I’m fine” and “I need to rest” mean, helping others adjust and adapt their day and time to your ever changing needs can be hard.
I have found that knowing my general maximum steps in a day helps me communicate my needs and limitations more easily. It has decreases my husbands frustration with having to leave events early and has helped our friends and family understand and be less reactive or frustrated if I need to leave or stop and rest.
It’s not a perfect system by far, but it has helps me be understood by the people in my life in a way that was difficult to explain before and that has dramatically help my relationships with my husband and friends.