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.

Nurturing your mind, body and spirit . . .

Today I received a message from a good friend of mine.  She was so distressed that she had missed another family party and the criticisms that she can only imagine that come from family and friends when her husband arrives alone.  I am astounded at how we are able to feel each other's pain from messages that come to us in cyberspace.  Some of that pain is a recognizable personal pain that comes from our own personal experiences.  We have all been in that same place.  Either that or we attend family and friend get togethers regardless of how we feel; in essence we put ourselves last.

In a previous blog post, Don't Ever Let Them See You Sweat, I talked about our invisible illness and how that actually helped me to keep working.  My writing was focused on that warrior side of us that won't give in to this illness.  But that is only part of our collective story.  It is critical that we listen to our bodies every day and that we place ourselves first so we can be as healthy as possible.  I want to reiterate that we absolutely cannot wait until others understand the gravity of our illness and the daily struggle for wellness.  For our own quality of life, our survival, and our ability to thrive, we must be