When It Comes To Mobility, What Is Success?

RA Guy Adventures of RA Guy 5 Comments

MobilityYesterday, while most of my friends and family were sharing the details of the great bargains they found during Black Friday shopping, or preparing for the long journey back home by either plane, train, or automobile, Rheumatoid Arthritis Guy was preparing to go to class.

If you live outside of the United States, you will find that – to most people – the last Thursday of November is just another normal day. Luckily, my class schedule is MWF, which allowed me to squeeze in some uninterrupted Thanksgiving celebrations (and lots of football games) on Thursday.

As I left to go to class yesterday, I gave myself plenty of extra times, as usual. Whether I need it or not, I have gotten used to leaving much earlier than usual. If I am not doing so well when it comes to walking, this allows me to get to the classroom with the least amount of stress (and on time). If I am doing well, this allows me a few minutes at the other end during which I can sit on an outdoor bench and enjoy the beautiful views from the elevated terrace. Either way, I win.

As I passed through the sidewalks that meander through campus (I take the “scenic route” in order to avoid the stairs), I found myself struggling a little more than I had during the past few weeks. I focused in on the weight distribution between my lower body and upper body, as I tried to manage the pain in all of my different joints. My feet were hurting quite a bit, as they had been during the previous days. This usually means that I move more weight onto my crutches and upper body with each step I take…but yesterday, in addition to my wrists being in more pain than usual, my shoulders were also not doing so well.

I did my best to walk without too much pain, and eventually made it to the classroom. Along the way, I started dreaming about shock absorbers, and wondered how they would work when combined with a set of crutches. (I think I came across something similar when searching around the web for information on sports crutches, a few months back.)

During times like this, I often find thoughts of another item coming into my head: a wheelchair. I begin to envision how much more comfort I could be in, if I could just take the weight off of my legs and feet, arms and shoulders. While I am finding some mental rest from the idea of sitting down while I move around, I know that I am not thinking about all of the physical obstacles that would present themselves, should I ever actually use a wheelchair one day. (For just one example, be sure to read The Seated View’s It All Comes Down to the Bathroom.)

Whenever I find myself thinking about a wheelchair, I often finish by dismissing outright any such possibility. “Well, that might happen sometime in the future, but it’s definitely not where I am at the moment.” Or even better, “I am going to be a success – I am not ever going to have to use a wheelchair.”

I have only recently stopped to think about what it is that I am actually telling myself. In the process, I am trying to come up with some healthier thoughts.

When I evaluate my wheelchair use, I begin to realize that it is not a question about now versus the future. The reality is that while I do not use a wheelchair on a regular basis, I have actually used a wheelchair before on various occasions. There have been many trips where I have requested – and used – a wheelchair at the airport. There have been many times when I used the electric shopping cart at Target and other stores. And there have been many times during this past year when, deep down inside, I secretly wished that I have a wheelchair available for my use.

Which brings me to the second part, which is that not having to use a wheelchair while living with rheumatoid arthritis is often interpreted as a success…but is this the right way to approach the subject? After all, I have been using crutches for a large part of this past year, and I don’t think this has made me any less successful during my journey with RA. If and when I do use a wheelchair again, wouldn’t it be better for me to see it as one more sign of my ability to incorporate assistive devices into my life, and not as an indicator of losing this or that battle?

Sometimes, like yesterday, my entire body hurt, and walking was difficult. This is part of living with rheumatoid arthritis. It does not mean that I am doing everything possible to try to slow down the progression of this disease. It does not mean that I am not a rheumatoid arthritis success story. All it mean is that at certain times, the inflammation is so strong and present in so many joints, that movement of any type become difficult.

I will do whatever I need to take care of myself. This includes, but is not limited to, the possibility of using a wheelchair.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 5

  1. Laurie

    Hey RA Guy, you use what you need to use to keep going. Have you ever thought about a rolling walker? they usually have a seat and a storage area under the seat, so you could take a break and sit if you needed too, or like my mom did, she’d sit and scoot around the house. I know when my knees bother me at work I tend to roll around on my wheeled office chair to scoot 5-10 feet to grab a chart or book.
    I don’t look at the use of assistive devices as a failure of our disease; their use is a way to keep active and engaged while preventing damage to already sore joints.

  2. Wren

    I’m glad your feelings have changed about using a wheelchair, if and when you need to. I think we’re all uneasy about using assistive devices to do things that we once did without thought. And we’re uneasy about having to explain why to others, and about the obstacles we’ll have to face. It all just sounds exhausting. But accepting the fact and using those devices — a cane, crutches, a walker, a wheelchair — means that you have a sort of strength and courage that many people can’t even imagine. That you can face the inevitable with a smile and a can-do attitude is a blessing of wisdom. Thanks for articulating your thoughts about this, RA Guy. You’re a wonderful teacher.

  3. Anita

    Dear RA Guy, I understand your hesitancy, but my independence is extremely important to me. If that means using a motorized scooter or wheelchair, then so be it. I can’t use crutches, because the R/A in my hands won’t allow it. I can’t use a regular wheelchair for the same reason. So, it’s a motorized scooter for me. It allows me to go out by myself and feel like I can do most of what I want to do by myself. That’s just really important for me.

  4. Post
    RA Guy

    Thanks for all of the supportive feedback. Just yesterday I went back to class for a make-up session (three hours on a Saturday afternoon – ouch!), and made it up with just a cane. It’s funny, how rapid the swings can be from one day to another. I think this post was my emotional processing of accepting more mobility aids into my life, if and when they are necessary.

    One drawback of where I live is that the built environment is not at all friendly for people with wheelchairs and similar devices…hopefully this will begin to change soon.

    My house is a whole other issue…not at all accessible in it’s current state.

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