One Patient's Positive Perspectives

Christmas in April?

Christmas shopping is a funny topic in April, but as I was thinking about firsts with lupus, I realized that my first rolling shopping mall trip was one of my most memorable lupus firsts.  Many years ago, when Christmas was approaching, I had to face the fact that shopping and the mall had been my absolute last priority, as I struggled through an intense long-lasting arthritis flare of my lupus.  Walking was extremely difficult because of swollen and painful feet, knees and ankles, along with overwhelming bone-tired fatigue.  Because my husband had never done the Christmas shopping alone without me, he devised a plan to accommodate my severely narrowed physical abilities and endurance.

Arriving at the mall, we approached the customer service kiosk as my husband informed me he wasn’t going to let me wear myself out shopping.  Dismissing my protests, he spoke with the mall staff and checked out a wheel chair.  Pointing to the seat, he said, “let’s go for a ride.”  It felt uncomfortable at first sitting and depending on him to push me around.  I struggled with the strangeness of my new mall perspective.  Sitting at a lower eye level than standing, it was reminiscent of walking beside my mother with my hand in hers, and not being allowed to walk around at will.

View from the wheelchair

There was an uncomfortable feeling of frustrating helplessness.  I had to tell my husband each time I wanted him to take me closer to something, and when he was looking at something, he would push me just past it, with my back to what he was looking at.  It took awhile before we communicated well about how the wheel chair was changing my shopping experience.  I didn’t like that we were not walking hand-in-hand as before, but rather he was behind me and often didn’t hear what I said.  I was along for the ride, and I certainly didn’t feel like I was in charge!  I didn’t really like it.

However, shopping from a rolling perspective was also a great relief because of the extreme fatigue and pain my lupus caused, in or out of the wheelchair.  As we gathered many purchases, I soon had a full lap and was competing with the gifts for space in my wheel chair.  By the end of the trip, I was exhausted, and greatly appreciating the wisdom and leadership my husband had demonstrated when he insisted on carrying out his plan to keep my strength.  I realized in retrospect that I would have been absolutely unable to endure the shopping trip that we had enjoyed that day together, spanning many hours and every corner of the mall.  I had to acknowledge how much my lupus was disabling me.

Others helped me get around

This was not the last of my rolling shopping excursions.  After that, most of my other shopping trips in malls, departments stores and grocery stores were from a wheel chair for a while.  For the next three years or so, my lupus continued its exhausting, crippling flare, despite the cancer and transplant chemotherapy drugs I was taking to control it.  My lupus even progressed to where one Christmas I didn’t go to the mall at all, and all my shopping took place from my home office desk chair.  That year all our gifts were ordered over the Internet and delivered to our house.

It was a full four years before I eventually ventured briefly into a shopping mall again on foot, and almost a full ten years before I was able to stroll through a mall from one end to the other on foot.  Even now, I have to carefully consider my footwear and stamina when planning to go to a shopping mall.  Often, I strategically plan to visit one shop, parking near by it to cut my walking distances.  After treatments several years ago with infusions of the biologic drug Rituxan, my lupus never returned to its earlier severity.  Although it has been many years since I had to do my Christmas shopping from the seat of a wheelchair, I will still never forget the adventure of my first rolling shopping trip!

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