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Using mobility aids with Fibromyalgia and Chronic Fatigue Syndrome
Thursday 5 September 2013
Do you feel weird, thinking about using a cane, or the motorized carts they have at stores and other places? I'm going to tell you why you shouldn't.
First, though, I totally understand why it feels strange. When you have fibromyalgia or chronic fatigue syndrome, you generally can still use your legs. It might hurt, and it might wear you out, but you're able to walk and we're all conditioned by society to think that mobility aids are for people with paralysis or severe injuries. Same goes for handicapped parking spaces – if you're not in a wheelchair or on oxygen, most people will say you shouldn't be parking there.
Society's image of what "disabled" means is really messed up. Those of us living with chronic, disabling illnesses need to recognize that and move beyond it.
Why? Because things are available to help you live your life a little better, and you shouldn't deny them to yourself based on society's ignorance.
Yes, someone might look at you funny if you walk up and climb in a motorized cart at the grocery store. But is that person going to push your cart and unload the bags for you when you get home? Does that person have the right to judge you? Should you tailor your actions to that person's taste, when it means increased symptoms and misery for you?
The answer to all of those questions is a resounding "NO!" Those carts are there for people like us, who need a little help to get through the task. If someone questions you, tell them your health problems are none of their business and go about your day. Or tell them off. Or tell them you hope they're fortunate enough to never need that kind of thing. Tell them whatever you want, but don't let them stop you from using it.
The first couple of times I used a cart, I felt like a fraud. I felt like I was taking something away from people who were worse-off than me. I remember being in a busy big-box store two weeks before Christmas, feeling rushed because I hadn't been able to handle a shopping trip for the previous month. People would glance down at me skeptically, or avoid looking at me completely. I felt simultaneously conspicuous and invisible.
But do you know what happened? I got my Christmas shopping done. It was a huge relief. Without the cart, I wouldn't have been able to do it – and not because anything was wrong with my legs. At that point, exertion was causing horrible abdominal pains and severe brain fog that would put me on the couch for days. The cart spared me that.
More recently, I was able to enjoy a day at the zoo with my kids because of a cart we rented, and I was able to participate in a weekend-long convention because we'd taken the wheelchair my husband found cheap on Craigslist, just in case. Those are experiences it really would have hurt to miss.
Several years ago, I was diagnosed with sclerosis (hardening and fusing) in the sacroiliac joints, which are near the base of the spine and help transfer your weight when you walk. At times, it's intensely painful and it can make walking a real problem. To my dismay, I realized that I needed a cane at those times.
The feeling of using a cane, when I was in my 30s, was entirely different from using the cart at the store. The way I walked made it obvious that I had a problem, and it's not like I was taking something away from someone else who might need it. In that case, it was pure vanity – I didn't want to use a cane like an old woman! Again, it was something I just had to get over. It took time, but I got to where I was OK with it. (Good thing, too, since now I have arthritis in my hips and knees and have to use it a whole lot more!)
So far, I haven't had anyone made rude comments over my use of a cane, cart, or chair. The one I keep expecting is something about how I'd be able to walk better if I lost weight. My planned response to that is: Did you ever stop to think that maybe the weight is the result of the loss of function?
As my arthritis progresses, I'm thinking that it's time to get a handicapped license plate. While I don't need one all the time, when I need it, I need it. On the days when I can walk the extra distance, I'll leave the space for someone else.
It's hard to get over the impulse to pretend nothing is wrong, try to blend in, and worry about what people think. In the end, though, we need to take care of ourselves and manage our illness(es) in the best way possible. You shouldn't have to suffer because some jerks don't get that.
Have you used mobility aids or handicapped parking? What was your experience with it? Have you avoided using them for fear of people's reactions? Leave your comments here!
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The above, with comments, originally appeared here.
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