One Patient's Positive Perspectives

Victory, not victim!

Lupus brings unwelcome boundries to daily experiences.  What an understatement!  Facing these daily hurdles as a victor, not a victim requires an intentional, deliberate plan.

Every day lupus imposes unwelcome limits, as it affronts a multi-system physical attack and “wet blanket” on a patient’s mind, body, soul and spirit.  Myriad symptoms, mental clouding, pain, disappointment and bone-tired fatigue can exact strong influence that threatens destruction of personal joy and the quality of life each day. 

Victor vs. victim mentality…

Adoption of a victim mentality looms as an ever-present temptation that can be fought and intentionally avoided.  It is easy to yield to the thoughts of self-pity, or to focus on the negative effects of the indiscriminate unfairness of lupus.  How can a person become a victor and not a victim?  There are several tactics that can help in finding personal victory in the face of lupus’ many, very personal challenges.

Finding, honoring and being at peace with reduced personal boundries has a potental to radically improve the overall quality of life for every lupus patient.  However, getting to a place of success within these limits requires big doses of forthright personal honesty, candor, tact and decisive action, and perhaps a sizeable dose of the daily grace of God.

Identifying and facing personal limits …

Start with facing the facts.  This is not a fun or exciting thing, but its the logical first step in dealing with the limits lupus causes.  Until they are identified, it is hard to form a plan to deal with those limits.  Looking at the exhausted person in the mirror and having a heart to heart chat about real limits is a good beginning.

Be honest, and try writing your limits down.  Simply start by folding a piece of paper into fourths and begin making lists.  Think about your daily abilities and realities, and write down in the four columns the activities you truly 1) Always Can Do, 2) Sometimes Can Do, 3) Symptoms preventing “Sometimes Can Do”, and 4) Never Do .  Your limits depend on changing symptoms, facts and abilities you may have on any given day.

1) Always Can Do… 2) Sometimes Can Do… 3) Limiting Symptoms … 4) Never Do…

Don’t be afraid to talk to others around you about your lists, and get their feedback and comments about your limits.  You may find they understand your limits better than you are willing to admit to yourself.  Your family, friends and even co-workers know you and they notice when you are struggling.  Knowing that others see and acknowledge your limits can really help you in facing them yourself.

Make a "Never Do" List

Dealing with the “never do” list…

Coming to terms with the things on the “never do” list is the first, fundamental foundation in dealing with limits and boundries.  What keeps you from doing these things?  These things are not part of a reasonable expectation for your personal responsibilities and accountabilties. 

Face it, these “never do” things are totally beyond your reasonable abilities and your limits.  Everyone has boundries, but with lupus, yours are most likely narrower than for people around you who don’t have chronic health challenges.    These are not the things you should feel guilty about not being able to do, but you may need to figure out how they can be accomplished.  What are these things in your life?  My personal list includes moving furniture, spending extended time out in the sun, walking up flights of stairs and carrying heavy objects.  Coming to terms with these unchanging limits helps me not feel so frustrated or victimized by them.  Knowing they are there is the first step in my action plan to taking charge of my limits.

If any of these “never do” things are essential to family life, take iniative to communicate and negotiate a fair plan for who in your household can and should do them.  Talk about your “can never do” limits with family, friends and other people who love you and provide support in your daily life.  Talk to them, explain your limits, and ask others to help do these things for you.  This gives you a plan, and involves the people who care.  By involving others with clear communication, you also help prevent your own frustration caused by your unmet and unexpressed wishes and expectations for help.  Since other people generally cannot read minds, direct communication is usually the best way to effectively convey your needs to those who are willing to help out.

You will be more at peace when you accept and communicate your personal “never do” limits.  Accepting these limits is essential to becoming a victor, rather than a victim.

Dealing with the “sometimes can do” list…

Carefully consider your “sometimes can do” activities.  If certain symptoms and changes appear, then you just can’t do them right now, but may be able to resume them when your lupus quiets down again.  Your boundaries changed, and that has to be okay.  Symptoms can be critical signs of an impending lupus flare, and important road signs cueing and clueing you to change your behavior.  This is the best time to shift to your short list of safer “always can do” activities. Identify what symptoms make the “if/then” activites hard, and write the symptoms down, along with your creative ideas to employ when these symptoms occur.  Don’t be a victim of the symptoms, instead, formulate an action plan for dealing with them!

Knowing when to stop doing the things you “sometimes can do” is also and essential part in helping reduce the severity and duration of lupus flares.  Its not a bad idea to come to terms with these things just not happening at all until your limits increase again.  You may just need to skip them completely for awhile.  Perhaps plan to let a little more dust pile up on the coffee table, skip answering e-mail, put off the vacuuming, bypass optional tasks.  Instead, invest time in resting and recouping your strength.  This is your temporary priority during these times of flare and reduced ability.

Becoming a victor requires knowing and heeding these important changes.  Taking wise steps keeps you in charge of your quality of life, and prevents becoming victim.

Listening to emotional, physical and spiritual cues …

Listen to the cues...

Sometimes the signs of our limits and boundaries are not just physical symptoms.  Perhaps emotional weariness or other burdens are contributing to the impact of lupus.  Known major life stressors such as grief, moving, illness, finances, employment challenges and changes and other factors can impact lupus.  During times of undue emotional or spritual pressure or burden, you could consider taking proactive steps to minimize the likihood these stresses may trigger a flare of your lupus symptoms.

When you face these increased non-physical challenges, you can respond proactively by reducing your priorities to the “short list’ of “always can do” activities and behaving as if you are already in a flare, although you may not have experienced any increased physical lupus symptoms.  Proactive actions to reduce activity and weariness may help prevent a flare by giving yourself the TLC and support you need to help deal with your non-physical emotional and spiritual stress.  Planning for and modifying behavior appropriately before an impending flare may actually reduce its severity, or even prevent it altogether.

Forgiving uninformed critics …

Uninformed critics...

Other people in our lives have expectations of what things we can and should do.  However, not everyone else’s demands have the same importance as others.  You cannot really control what others think, but if you have come to terms with your limits, and communicated well about them with others who care about you that is really all you can control.  If others outside your circle of trust and support try to impose their expectations on you, or expect you to act outside your safe limits, ignore them.  Don’t take on false guilt about things you cannot and should not try to be doing.

Another word about the critics and naysayers.  You may never be able to convince some people that your lupus is real (since they don’t know much about it, it doesn’t really exist as far as they are concerned,) or that it really affects you physically with limits and challenges (perhaps because they may think it should not affect you that way.)  Some people just do not have the ability to see other people’s lives outside their own reference point and their own abilities and experiences.  Some people even go so far as to refuse to “accept” the fact that you have lupus, because in their mind you do not have their “permission” to have lupus.  You can’t change these people.

Each of these attitudes have been encountered in my own experiences.  These unfortunate folks may always judge your actions in light of their own abilities or personal expectations.  They may be simply unable to do otherwise.  It is always an option to choose to be upset and frustrated with these people, but forgiving them is simply a more victorious, freeing choice.  It is really the only viable choice for dealing with the frustration you may have in response to their unkind comments and criticisms. 

Since their attitudes are really outside your control, your choice to forgive and overlook their uninformed perspectives  frees you of the angst they might otherwise be fueling in your heart and mind.  Who needs the stress of living under these people’s judgments and expectations anyway?  The real responsibilities and burdens we must satisfy in our lives cause enough valid stress of their own, without assuming the burden of other people’s unfair expectations. Consider that they may not know any better, forgive them, and move on.

Forgiving and selflessly giving to those we love, regardless their imperfect support of our needs…

Forgiving and selflessly giving...

Thinking that another person, no matter how dear or near they are, can understand and meet all of our deepest needs is unfair, to say the least.  However, many lupus patients, and other people in general, expect that their wife, husband or other close friend or family member can meet their deepest emotional and spiritual needs.  This is a woefully unfair expectation of them!

Consider that perhaps, apart from God Himself, no one else really knows our mind, deepest soul and spirit enough to perfectly understand and provide satisfaction for our deepest longings and needs.  It is worth examining the expectations we have toward our inner support circle, and placing only fair and reasonable expectations upon them in relation to our lupus-caused needs and burdens (other other needs, as well.)

Remembering that we are partners, with or without lupus, to those we love is critical.  Being a victor over challenges we face, due to lupus or any other difficulty, depends sometimes upon selfless acts of love toward others.  At times, it is my experience that I must look to God to deal with and in my own heart to loan me His ability to express selfless support to those I love.

When I feel poorly, even then, it may be God’s desire to grant me the ability to be victorious over my own flawed nature, and He may enable and permit me to rise above the limits imposed by my illness, to extend care and support to others while I myself am suffering.

This is not beyond the will or power of God to help me do.  In my own flawed abilities, it is very much impossible, but with Christ’s help, it is indeed possible.  At times, we may need to truly sacrifice ourselves to demonstrate love and compassion to those around us.

Having lupus does not release me from obligations to love and support those I care about, nor free me from my responsibility to attempt to care for their needs, even sometimes before taking care of my own.  When I am weary, empty and unable to think about anyone but myself, there is a source of love and help in Christ, who can enable me to love and give beyond my fleshly limits.

Watching God undertake and do this on my behalf has been part of the mystery and mercy of the love of God in daily life.  The Apostle Paul once said that he would rather “glory in his weakness,” that “the power of God would rest in him,” and that “His strength is made perfect in weakness.”  This is a key to avoiding victimhood!

Remembering thankfulness …

Too much has been written and said about the half-full vs. half-empty glass.  However, there is something to be said for being thankful in the face of challenges and limitations.  Lupus is no excuse for bitterness and grumpiness. 
Instead, I choose to be truly thankful, even for lupus.  While, if given an option (any option) I would wish lupus away in an instant.  But, knowing I have faced my limits as squarely and honestly as I am able, and have devised a plan for what to do when my limits suddenly decrease, I have much to be thankful for!  Lupus is only ONE thing in my life, it is not the ONLY thing.

I thank God every day for the blessings, for the good days, and for His help and presence in the bad days.  For, perhaps, even those bad days draw me “nearer, my God, to Thee!”

The one thing I know is that I have everything else that is good in my life to be thankful for.  I refuse to let one (albeit major) negative thing in my life keep me from experiencing the joy of thankfulness.  To do so would be to greatly lack balance and perspective.  I have many blessings that have been made visible to me only because of my lupus…  so I choose to count my blessings!

Remembering thankfulness...

Although lupus is an unwelcome companion in my daily life, it does not define me!  I should not allow it to steal away the joy of each day, hour and moment.  That would be giving it, and it’s unwanted symptoms and limitations, too much power over the quality of my life and make me its victim.  With God’s daily help and grace, my choice is to be victorious!


Comments on: "Facing boundries as victor, not victim!" (2)

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