Tuesday, April 12, 2016

And then there was 1

We bought a new couch a few weeks ago.  With 4 recliners, you know so both of my teenagers and my husband and I can all put our feet up at the same time.   It's a big deal to me.  I now have four different options of places to sit when I'm not feeling well.  When one spot gets uncomfortable, I can move to the bed or move to another recliner.  It's the little things.  When its just me, it's the little things.

It's taken about 6 years.  I've had my definite diagnosis of Fibromyalgia for 6 years, 3 years after my rheumatoid arthritis diagnosis.  It was as the fibromyalgia started to really effect my life and I started spending more time in bed that I realized I was hearing less from  everyone else.  Actually, it was when  I had to give things up that I realized no one was really around much anymore.

When people get "sick" or maybe they're having surgery, friends, family, church members show up with casseroles to drop off for their recovery and they're gone because they'll soon recover and all is well.  Their work is done.  Good deed accomplished.  In today's society the way we see our friends is we go out for "girls night" or we meet for coffee at Starbucks to catch up. So they need not stay to see they're friend and hold a conversation or subject themselves to their friend's sickness, recovery, or disability because surely they will be able to go out to a funner and swankier location to see what's going on with them.

But what if that friend doesn't get better?
Then what?

Your casserole has done been eaten.  Now what?

Pain is lonely.  There is no doubt about it.  People quit inviting you to go anywhere
because your attendance to cancellation ratio goes way up.  So then the invitations go

to zero.  And the visitation rate goes to.....zero.   Pain is lonely.

Most chronically ill people aren't flaky when they have to cancel so much.  They're just sick.  They just hurt.  Sometimes they'd just like a card in the snail mail that says you're thinking about them and that you love them.  If they're up to it, sitting in they're home instead of at Starbucks to have a cup of coffee as long as you don't mind a commoner's cup of coffee.  I can't make a skinny-cinnamon-dolce-fat-free-no-whip-latte, but I can make a cup of joe with some Italian Sweet Cream coffee Creamer with Pandora streaming on my smart TV.   As long as you're coming to see me and not my house.....you're welcome anytime.  As long as you understand this:

I'm just as sick in the first picture as the second picture....it just depends on how much the disease decides to rear it's ugly head.  I don't go out when I feel like the 2nd picture.  Because it's bad.  It's bad.  I don't even have words.

My circle of friends is small....because it has become that way.  People have walked away.  People have taken it upon themselves to decide I'm too high maintenance.  Or the worst one, that I'm faking it.  All I ask is that maybe my small circle believe me or take some time to educate themselves of the disabling effects of fibromyalgia and rhematoid arthritis.  Not only so they can support me, but so they can support my husband and boys.

Here are some great Resources on dealing with invisible illness.  http://www.butyoudontlooksick.com/

1 comment:

  1. Yes, ALL THIS, all this! Wish I didn't understand, so well.

    I love you, Jax.