One Patient's Positive Perspectives

A key to managing lupus

In every lupus patient’s life, there are people around them who seem to be able to keep going and going without ever stopping, the energizer bunny folks!  We all know at least one of these people, and for most of us, when we compare our own lives to these active busy people, we sigh in weariness at thoughts of their schedules.  Lupus patients have limits, some of us much more than others, but perhaps the majority are polar opposites of our more active, constantly moving and doing acquaintances and friends.

People with lupus may have limits that affect their social life, and their behavior in response to those limits can affect family and social life and the outcome of health with lupus.  A key to managing lupus is to look at these limits squarely, head-on, and to come to terms with what we will do in response to the restrictions lupus places on our life.

Admitting you have limits

Limits with Lupus

The first place to start is by admitting to yourself that you have limits.  I don’t like having to admit I cannot do all the things that I want to do.  I really dislike having to say no to activities everyone else is doing but I am faced with the reality that I have different needs and limits.  I have a budget of energy and strength, and have to spend it wisely.  When the account gets overdrawn, and when I become overcome with bone-tired fatigue, a lupus flare is not far off.  It is important that I accept the fact that Lupus puts a very definite strain and burden on me mentally, physically and emotionally.

Where to draw the big red line?

The Big Red Line

A good next step is to prioritize the things I feel like I need to do.  This is important, so that I am prepared to identify a point in the descending list of responsibilities and activities where I will draw the BIG RED LINE (BRL)  Knowing what is most important helps respond to social pressure to go and do more than I should.  It gives me  a prepared psychological and verbal script to follow when the pressures come at me to exceed my limits.

In the past couple of weeks, I had to pull out the script several times, as there were some activities “everyone” in our social circle were attending, but they were well below my BRL.  Some things may be above the BRL one week, and below it the following, because life is messy and flexibility is required! The one predictable thing about lupus is that it is unpredictable.

Communicating limits

Limits and Social Life

One of the hard things is communicating to others about the BRL, especially when others expect you to do certain things.   Just yesterday, my husband and I ran into a couple we know at Costco, and before I knew it I was explaining that we were not going to the graduation party for our mutual friends’ daughter.  I ended up explaining my BRL and how my lupus forces me to cut out things I really want to do that are important.

Our friends were assuming that we were going, too.  But, not this week, we wouldn’t be there.  If not for respecting my lupus imposed limits, I would not have missed being with our friends that evening for anything!  But, after cleaning house, shopping and handling the rest of my essential family and household responsibilities, my budget of physical resources was exhausted.  I had hit my BRL without a penny to spare.

Peace with lupus-imposed limits

But, because of lupus, there are some social realities I have to face.  There will always be people who have unfair expectations of my choices about what to do and where to go, and they unfortunately expect their priorities to be mine.  They may never understand my logic and reasons for the times I do not show up.  They might not even deserve an explanation.  Yet, when I have certainty in my plan, and manage my activities strategically, I am prepared for the social pressure encounters with these people may bring.

I can have peace with my lupus-imposed limits, and freedom from false guilt about things below my movable Big Red Line.  With all my imperfections and the frailty of human life, it is good to remember that before our Creator formed us and breathed His breath of life into us, we were just dust.  We need to remember that we are but dust, and we need to keep from rushing ourselves back into that state.

I need to remember to choose with wisdom and forethought what activities will be above the big red line, but not blame anyone else for what falls below it!  I should not do more than God has designed my imperfect frame to accomplish.  In fact, less just might be more!

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Comments on: "Lupus, limits and drawing the BIG red line" (2)

  1. I am really struggling with the BRL. I have been one of those energizer bunny types, until I hit the lupus wall 2.5 years ago.
    I have been reading your blog – and it is nice to see that others struggle with the same issues. I started writing my own blog yesterday, more for myself to start getting out all the feelings I have about lupus, and begin to accept that it is here to stay.

  2. I have struggled with this for years, but now I know that I have to “spend” wisely too. I was one of those energizer bunnies, but Lupus took that from me and now I just do what I can, go when I can. If I upset people, I’m sorry but us Lupus people have to chose and pick just so we can get through the day. I only have so many pennies or “spoons” to get me through the dayand if I spend or use them unwisely then that means bad news for me and I won’t be doing anything in the days ahead. It took me a while to learn this because when I felt good I thought I could go like I used too. Wrong! So I have learned to shop wisely now. Thanks for all the wonderful articles. You have really helped me understand more and more about Lupus. I always look forward to your posts because they are honest and up front. Thank you!

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