Invisible illness week -- no sympathy, just understanding

An invisible illness has its difficult side, because no one knows I'm sick.  But that is actually preferable.  There are people that have been burned beyond recognition and survived only to be viewed as a scary monster.  Dealing with an invisible illness and a total change in body image is a most difficult situation and I thank God I don't have that to deal with too.  So I am grateful that I don't have more challenges than I already have.  I don't seek sympathy; it's empathy and understanding that I want.  Just some understanding goes a long way toward feeling a part of something and not feeling so all alone with the burdens that I bear.  I think it's probably the same for you too.  We are all in this eye of an invisible storm that no one else can see.

Sympathy means that someone feels sorry for me . . . I sure don't need that.  And I don't need to spend time feeling sorry for myself either.  That leads to a downward spiral.  The one thing I do need is to take care of myself in ways that others may not even imagine.  I avoid negative people and their negative energy because that takes a big toll.  I listen carefully to my body, because the body rules.  If I ignore what my body wants I risk going into a total fm flare.  That's probably the hardest part, because my brain wants to rule and I have to work at holding it back.  The inability to keep up with others due to low energy is probably the hardest part for me.  I plan my activity very carefully to avoid getting into a flare, because once that starts it's hard to recover and then I miss life as it goes swiftly by.  Socialization takes so much energy and although I thorougly enjoy it, I am always totally exhausted and in pain afterwards.  But it is usually worth it!

So as we raise awareness for invisible illness, I know I'm in good company and that in itself is comforting.  I'm so sorry you are so sick, but I sure appreciate your company.  Take good care and may you find peace in each day.

Narcissists practice isolationism

People with fibromyalgia have neurological sensitivities that leave them vulnerable to toxic people and toxic environments.  When exposed to these toxins the result is an increase in stress and a fibromyalgia flare.  One of the most toxic people that anyone can come into contact with is a narcissist.  For someone with fibromyalgia, narcissists are deadly.

Narcissism is a complex disorder that is perplexing to others.  This disorder can appear quite different from one person to the next, but there is one thing they all have in common: a lack of empathy for others.  The lack of empathy for others is the hallmark feature of narcissism, which can be difficult to identify because they are so clever at disguising their narcissism.  A narcissist studies normal human behavior by observing the responses that others have in a variety of situations.  They may appear to have friends, but upon a closer look those friendships are all superficial, and enduring, close friendships are absent.  The narcissist is a wolf in sheep's clothing.

The nuclear family is traditionally the primary support system, but for a person that has narcissistic family members there is no primary support system.  This situation leads to isolation, especially for a person with fibromyalgia that may have few support systems available.  The lack of a primary support system creates stress, which results in fibromyalgia flares and a decline in health status.  If this isolated person attempts to set boundaries on the narcissistic family members' abusive behavior or limits contact with their narcissistic family, these family members in turn purposely isolate the family member even more.  Remaining in this toxic environment with toxic people takes its toll, but the isolation from family takes its toll too.  It's a catch 22 situation.

As long as a person remains in the presence of toxic, dysfunctional people, they will be unable to function on a healthy level themselves.  The person and their fibromyalgia symptoms will be minimized, ignored and demeaned.  This leads to constant turmoil and feelings of inadequacy.  In essence that person must cease to exist to serve the needs of the narcissist -- a person that always has an empty bucket to fill, but the bucket has a big hole in the bottom so the narcissist must continuously feed off others in an attempt to fill that bucket.

There is no quality of life when a narcissist is close enough to cause you harm.  But they can only cause harm if they are in your life -- don't walk; run away as fast as you can.  Your number one priority is YOU.  If  you have fibromyalgia you absolutely cannot afford to have these toxic people close to you.  There are worse things than being alone.  Adopt others into your life and find solace and support within your extended "family".  The best advice I have ever heard is "Pick your family carefully."  Blessings to you and may you find solace and joy and freedom.

A wildfire called fibromyalgia

California wildfire near Los Angeles

California is in the worst drought conditions in 150 years.  Instead of rain the weather is sunny, in the 80's with Santa Ana winds blowing and gusting to 70 miles per hour in the southern part of the state.  As a result a wildfire burns acre after acre of timber fuel that hasn't seen fire in 40 years.  Australia is in mid-summer and wildfire burns there too.  In dry, arid regions it doesn't take much for a spark to become a wildfire that ravages the land and destroys homes.

One of 70 wildfires burning in Australia

The wildfires made me think about the insidious onset of fibromyalgia and how quickly those early symptoms turned into an illness out of control.  When did it really start?  I can trace fibromyalgia back to my 20's when random symptoms began to appear, which seemed completely unrelated.  The Restless Legs Syndrome, the IBS, unexplained exhaustion, slow recovery from exercise . . .    I wonder when that early spark was set before the fibromyalgia wildfire began that has ravaged my body and threatened to rob me of my life.  There was no doubt about when this illness became a wildfire that was completely out of control.  Symptom management has succeeded in maybe 30% containment, but what will fan the flames in the future?  That is when the fear and anxiety set in.  Will this wildfire be completely out of control again?  How long can I fight?  Do I have enough endurance?  Can I fight against depression?

I wanted to join some friends for a fun, 3-day trip to Tucson for a bead and jewelry show, but I realized that I don't have enough fortitude or physical resources to be able to do that.  I have to use the energy I have to fight this wildfire called fibromyalgia.  I feel cheated, because after all my friends that will be going without me are 10 years older than me.  So why can't I do this???!

There is one thing I do know.  If I don't stay at home and fight this fibromyalgia wildfire it will no longer be contained and then I will be facing a flare.  So it's time to regroup, get my priorities straight and be satisfied with my 30% containment.  I need to focus on what I can do and not what I can't.  After all, that is what everyone must do so I'm not alone.  Everyone has limitations in one way or another.  Hmmmmm.  I wonder what would happen if I set a backfire.  What would that look like anyway??  Maybe I should call in some firemen!  Ha!  Blessings to you as you fight this wildfire called fibromyalgia.