Limitations with lupus: Just because you can't today, doesn't mean you never will
"If at first you don't succeed..."
Since being diagnosed with lupus almost 19 years ago (eek!), I have come to accept that there are a few things I simply can't do anymore - work a full time job, go an entire day without a nap, pull an all-nighter, do extensive yard work/housework due to arthritis, along with a few others.
But there is an even longer list of things that I can do now that I once couldn't. Past issues with photosensitivity, fatigue, joint pain/swelling, allergies to food, hair loss, or organ involvement once prevented me from accomplishing the following. But not anymore!
Today, I can: sit on the beach with my kids, run a business, volunteer, do 1000 jumping jacks, braid my daughters' hair, braid my own hair, take pills only once daily, go more than a month without a doctor's appointment, have a glass of wine, eat spinach, be spontaneous after 6pm, and so many more!
And I just recently added another "can do" to the Yes! list: I can now drive for extended periods (try four hours!) at a time. Hooray!
This was not an overnight accomplishment, mind you. I have been working up to this for some time. Since being diagnosed with lupus, there were years where I couldn't even drive 30 minutes at a time! The fatigue was overwhelming, not to mention the joint pain, brain fog and difficulty focusing. My symptoms made it nearly impossible to stay alert or comfortable behind the wheel for long. So I just didn't. My husband, Johnny, picked up the slack - some days, even driving me the 25 min to work.
While letting go of driving was one way I could conserve energy and manage my symptoms, it was also a loss of independence. I hated that. I didn't like relying on others. I didn't like the vulnerability. I resented the inconvenience. I didn't like losing the power to complete such a basic task.
But I gave myself time. To heal. To rest. To get better. And slowly, my driving tolerance increased. I learned to experiment, but not push myself.
I started driving for longer periods of time around town. I drove the extra 15 minutes to the good mall. I drove to my girlfriend's house 45 minutes away, but made sure to schedule a nap at her house before driving back. I had to make concessions, like never being on the road between 12-2pm, because it was too close to my naptime, but I felt a freedom like never before. I had earned it. And I wasn't going to squander it by pushing myself too far, too fast.
Just last year, when my dad needed transportation to Baltimore (over an hour away) three times a week for cancer treatment, I had my first real test. My sister and I stepped up immediately to act as chauffeurs. But I had my doubts as to how I would fare with the hour and 15 min commute (on a good day), totaling almost 3 hours a day.
But it went well. My dad was a wonderful driving companion, and I will forever cherish those conversations we had during those drives. And as our already strong father-daughter relationship flourished, so did my driving endurance.
Which led me to two weeks ago, when I was faced with a trip to Roanoke, VA for a holiday gift show to sell pillbags. Roanoke is four hours away, and my husband and I had plans to make the trip together. But a few days before the trip, I realized that if we tackled the trip separately, we could save on babysitters, dogsitters, family time with our girls, work time for Johnny, etc. I knew I was up to the task, and I am extremely proud to say my 4-hour drive down and back went beautifully!
Of course, I was smart about it. I drove only during my prime, which for me is between 8-1pm. I took extra time to rest upon my arrival, ate well, exercised, and made sure I minimized stress on either end of the journey. In fact, on my return trip, I chose to drive directly to my house, nap, and then pick up the girls from the sitter (my sister, in this case). Some might call that selfish. But those who understand the value and necessity of a lupus nap know that I was actually being strategic and forward-thinking.
And that feeling of freedom I described before? Oh, it was as alive as ever! The independence, the convenience, and the resilience I felt was remarkable. I loved being so...effective, and will remind myself how important it is to find ways to contribute, no matter what the state of my health.
It's always exciting when you discover something you can do that you couldn't do two days, two weeks, two months, or even two years ago. Progress is progress. What have you added to the Yes! category recently?
This was not an overnight accomplishment, mind you. I have been working up to this for some time. Since being diagnosed with lupus, there were years where I couldn't even drive 30 minutes at a time! The fatigue was overwhelming, not to mention the joint pain, brain fog and difficulty focusing. My symptoms made it nearly impossible to stay alert or comfortable behind the wheel for long. So I just didn't. My husband, Johnny, picked up the slack - some days, even driving me the 25 min to work.
While letting go of driving was one way I could conserve energy and manage my symptoms, it was also a loss of independence. I hated that. I didn't like relying on others. I didn't like the vulnerability. I resented the inconvenience. I didn't like losing the power to complete such a basic task.
But I gave myself time. To heal. To rest. To get better. And slowly, my driving tolerance increased. I learned to experiment, but not push myself.
I started driving for longer periods of time around town. I drove the extra 15 minutes to the good mall. I drove to my girlfriend's house 45 minutes away, but made sure to schedule a nap at her house before driving back. I had to make concessions, like never being on the road between 12-2pm, because it was too close to my naptime, but I felt a freedom like never before. I had earned it. And I wasn't going to squander it by pushing myself too far, too fast.
Just last year, when my dad needed transportation to Baltimore (over an hour away) three times a week for cancer treatment, I had my first real test. My sister and I stepped up immediately to act as chauffeurs. But I had my doubts as to how I would fare with the hour and 15 min commute (on a good day), totaling almost 3 hours a day.
But it went well. My dad was a wonderful driving companion, and I will forever cherish those conversations we had during those drives. And as our already strong father-daughter relationship flourished, so did my driving endurance.
Which led me to two weeks ago, when I was faced with a trip to Roanoke, VA for a holiday gift show to sell pillbags. Roanoke is four hours away, and my husband and I had plans to make the trip together. But a few days before the trip, I realized that if we tackled the trip separately, we could save on babysitters, dogsitters, family time with our girls, work time for Johnny, etc. I knew I was up to the task, and I am extremely proud to say my 4-hour drive down and back went beautifully!
Of course, I was smart about it. I drove only during my prime, which for me is between 8-1pm. I took extra time to rest upon my arrival, ate well, exercised, and made sure I minimized stress on either end of the journey. In fact, on my return trip, I chose to drive directly to my house, nap, and then pick up the girls from the sitter (my sister, in this case). Some might call that selfish. But those who understand the value and necessity of a lupus nap know that I was actually being strategic and forward-thinking.
And that feeling of freedom I described before? Oh, it was as alive as ever! The independence, the convenience, and the resilience I felt was remarkable. I loved being so...effective, and will remind myself how important it is to find ways to contribute, no matter what the state of my health.
It's always exciting when you discover something you can do that you couldn't do two days, two weeks, two months, or even two years ago. Progress is progress. What have you added to the Yes! category recently?
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