Who has your back?

Okay, so today marks our first snow storm here in New England!  And, no, we aren't talking about a few flurries.  Actually, we are talking more along the lines of 6-10 inches.  I must admit, I'm excited.  I love the newness of each season.  Remember the first day in the late spring when we can wear sundresses or tank tops and the kids can drag out shorts?  It's a night that will most definitely end with ice cream and playing outside for too long.  I feel the same way about the first snow.  Granted, it would have been nice to get through Halloween first, but hey. This is me trying to live in the moment.  So, at this moment I am warm and safe and it's pretty outside!  I'm working hard on staying in the moment lately. It isn't that I'm really evolved or anything.  I wish I was.  Truth is, I just get overwhelmed by every little detail of my life.  So, I literally focus on the task at hand.  Right now I'm focusing on my thoughts and the sound of my fingers on the keyboard.   Who feels completely and totally overwhelmed, overextended, exhausted and incompetent???  Yeah.  Take a number, sista.  We have to come together and have each others' backs.  But, that cannot happen if we aren't willing to foremost have our own backs.  This is one of those big life lessons that I was sent to earth to learn because this comes up in my life constantly and has for many, many years.  So, here is what I did to respect myself and get my back today.  I said no.  I chose to work all day on my sons' Halloween costume because I wanted to and he still thinks it's cool if I do a good job.  Today was the only day I had to do it.  Therefore, I am exhausted, sore in pain and in no shape to attend the annual family Halloween party.  I excused myself and here's the kicker.  No guilt!!!!  I can honestly say with the purest of hearts that I do not have an eensy bit of guilt.  I knew if I went, I would be overdoing it (pretty sure I already have anyway) and would be only going for the benefit of others adults' needs and expectations.  So, my fantastic husband brought the boys over and I am here blogging, soon to be snoozing.  So, how many spoons (please see the spoon theory on butyoudontlooksick.com)  do I get for that?  Let's see...........setting boundaries to take care of myself AND embracing change (i.e.snow).  Oh, I think I deserve at least 5 for that.  I'm going to need them.  I will try to store as many up for the upcoming months as possible.  

Before I sign off, I am leaving a link to a great video and song regarding Fibro awareness.  I hope you can learn from it and be able to love yourself a little more after seeing it. 

Gentle hugs to all.

http://youtu.be/jD81VKBkxHc

One is the the loneliest number

Remember that song?  Why is it that with a house full of people, I feel so alone?  Oh, I know.  I have a flare up.  Today when I walked through the living room I actually saw red when I witnessed a family riding by on bikes.  The rage in me was palpable.  Yes, people I am livid that there was a nice family riding by my house on bicycles.  I'm that maniacal.  Listen, I'm not an angry kind of girl.  I let people go in front of me in traffic, I stop at all crosswalks and wave to people with a smile.  I can honestly say that for the most part, I treat others the way I want to be treated.  So, why the sudden urge to scream out my window at those innocent passersby today?   I'm furious.  I'm hurting physically, yes.  But, I am even lonelier and more sad than I have felt in a while.  I want to be apple picking today.  I want to rake leaves.  I want extra hugs and a picture drawn for me by my four year old.  How does one ask for what she needs when her needs are always so great?  It's like asking the person who stopped on the highway to help you change your tire and let you use their cell phone to give you five hundred bucks, too.  Okay, not the best analogy.  I'm trying here.  It's hard to write about this stuff.  I hate feeling needy and dependent.  There is no way in hell I am asking my husband to help me take a shower, for example.  I need one and want one but I will wait, thank you very much, until I can do it myself.  I am not 98 years old.  He did not sign up for that and frankly, neither did I.  I have been told that in order for feelings to not get "stuck" inside of me, that I need to move and walk or dance or whatever I can do to keep my body moving.  What do I do when typing, reading and walking to the bathroom zap every ounce of what little energy I have left?

What's a girl to do?  Well, she feels her feelings.  She writes.  She gets through the day.  Every stinking minute of it. 

She closes the pages to this rotten day and says good bye and good riddance.

Then waits for the sunrise of a new day.

The Enemy

It's been so long since I've blogged.  I've been doing a lot of writing on my forthcoming (hopefully!) book.  However, I have come across this piece of writing from a few years ago.  Although it is two years old, I believe it captures the essence of what life is like for a parent with chronic illness.  Maybe it will resonate with you.  Here it is:

                                                                      

The Enemy

The enemy sneaks up on me even when I am awake and trying to look around.  It is an evil force that encompasses my body.  The enemy is brilliant if not menacing.  When I blink, it is there squeezing its way into my innermost parts of my body.  My muscles, fascia, and soon my brain.  Exhaustion sets in.  I fight the enemy.  I begin to feel beaten down.  I fight the enemy more.  I pray.  I look at my children.  The enemy knows.  It sees all and laughs at me.  I tell the enemy to go to hell.  Instead it burrows deeper inside me.  Pain heightens.  I drive and pick up my son.  I play with my 2 year old.  The enemy is always present.  I ignore it.  I act as though it is not there.  I keep pushing.  Sleeping isn't enough.  Doctors' appointments.  Hope starts to fade.  Will you play with me?  My heart is rapidly breaking down.  The enemy shines.  It is winning.  I say LEAVE ME ALONE!!!  It never does.  Vitamins, medications, therapy.   Pain becomes practically unbearable.  Loneliness seeps in.  The enemy is winning.  It smiles wickedly.  I pray but lack energy.  Jesus help me, I plea.  But the enemy has broken down my hope and faith.  I cannot find God.  I am lost.  I am so tired.  Pain is everywhere.  My family begins to fall apart.  I know it is I that is the cause.  I am frozen.  I need to lie down. I cannot move or do anything.  I sit and watch as my world crumbles before my very eyes.