thoughts for the new year............

Thoughts for a new year..............This year I want to have more fun, more laughs and more time with my husband.  I want to be more patient and less critical.  I want to take a Zumba class outside the confines of my living room!  I will audition more.  I will be more courageous.  I will ski with my boys, build snowmen, and be in the moment with them.  I will muddle through flare ups and...remember that I am still me even when I am sick.  I will look for the worth in others, as well as in myself.  I want to paint, dance, act, write and strive to be the mother I was meant to be.  I will be my own best friend and consequently will have more to give to others.  I will pray more and worry less.  I will keep on walking, stumbling, crawling even when I feel I have lost my way.  I will be cheerful.  I will remember that we are all just human beings doing our best in this world.  I will know that I am enough. 

 

The Honest Truth

This has to be one of the worst flares I've had.  Maybe not.  My memory doesn't seem to be cooperating with me very well lately.  I haven't written in a long time due to the pain and fatigue.  You know what?  That's not even the real reason.  Truthfully, I have been afraid to write.  I'm very aware that everything I write is read by people.  This can be a detriment to honesty.  Then again, how much honesty are people ready for?  How much am I ready to admit?  I like to consider myself a patient, optimistic, determined person.  Here's the thing, though.  Lately, I don't feel like any of these things.  I am trying.  But, sometimes I don't feel like trying.  I feel like all I can do is survive the day.  And surviving a day or two is one thing.  But when you begin to string days to weeks and weeks to months of surviving, life becomes just that; survival. 

I am fed up.  Anger has erupted in me like never before in these past several weeks.  Sadness has overcome me in a very deep way.  For a person who has often had trouble crying, tears have been drowning me.  I feel alone, lost and (here comes the truth none of us want to hear) shrouded in hopelessness.  My children need me.  My husband is working in overdrive.  My house is a mess.  Christmas is fast approaching.  Everything is spiraling out of control and I'm in too much pain and too exhausted to so anything about it.  I want to make cookies, decorate and play with my children.  I want to make my husband a nice meal for his birthday.  I want to dust and do laundry like a normal person.  Forgive me, but I do not think I am asking for too much.  I just want more of a life than existing until bedtime when I crumble into the sheets and hope and pray for relief. 

Of course I am grateful for a home, my healthy happy children, a wonderful husband and that I do not have a fatal illness.  But, does that mean that I also am not allowed to want more?  We Fibromyalgia folks are too often criticized for complaining, malingering, exaggerating, and being attention seekers. 

The hell with it.  I am complaining.  I am angry and sad and feeling desperate.  I'm exhausted.  Like I have the flu 24/7 exhausted.  Like walking to the kitchen and back and shaking from over exertion exhausted.  I hurt.  Pain like knives are being stabbed into my neck and back.  The kind of pain that literally takes my breath away and leaves me nauseous. 

This is what I wake up to and deal with day in and out. I pray for sleep to give me respite.  This is the only escape I have.  Some nights are not as kind as others. 

So there.  I threw up all over the page and onto you, my readers.  I'm sorry.  I'm sorry this is not an entry with some kind of positive message.  I'm sorry I cannot be a role model today.  I'm sorry I cannot inspire anyone. 

Today I just can't.  I'm just trying to get through the day.  Again.  Trying to muster up a little speck of hope for tomorrow. 

This is real.  My illness is real.  My pain is real.  This entry is real. 

Honest and true.

Right Here, Right Now

Just for today....................


I am me.  I am just right the way that I am. 

I am enough.

I will love myself and take pride in all of my hard work.

Today will not be a day of self-abuse.  Today will be a day of self-love.

Today I will smile, laugh and feel peace. 

I will dismiss negativity and rejoice in all that is pure and life giving.

People who carry hurtful or unkind words or actions towards me will be dismissed with a simple, "Bless and Release".

I will breathe deeply.

I will choose nutritious foods to feed my body.

I will know my limits and respect them.

I will make time to do something creative.

I will do simple chores and be satisfied with my work.

I will not exhaust myself or risk injuring myself by doing too much.

I will love myself by choosing all of the behaviors listed above.

I am enough.

I am in the moment.

Right here, right now.

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.



Old Journal Entry from 2004; Hope Lost

I found myself going through some old journals of mine for material for my book.  I came across this one and found it so sad but so telling of that time in my life.  Here it is, for what it's worth.

Journal Entry 12/11/04

It's been a very rough couple of weeks.  I tapered off the Zoloft and started Cymbalta in hopes it would work on my pain.  But, either I'm not responding to Cymbalta or it hasn't kicked in yet.  Last week was so horribly miserable.  I didn't feel suicidal but I felt so dead inside.  I just wanted relief.  So, now I am taking the Cymbalta along with 100 mg of Zoloft (half of my previous dose).  Almost immediately after my doctor put me back on the Zoloft, I felt a lot better.  I am really struggling with my role as a parent right now.  I haven't been getting a lot of good sleep and I'm fighting the cold Nicholas has.  But, I have no desire to really engage and play with my little guy.  This makes me feel horribly sad and guilty.  I feel so burned out.  But, why?  Todd's been home all week on vacation.  This has helped me tremendously.  Since my med. change has been so tough and I've been feeling so tired, etc. it's been great to get some relief from full time parenting. 

Nicholas is the cutest, smartest, funniest, most imaginative little boy.  I absolutely adore him!  But, with winter here and the days long and dark and Todd gone 12 hours a day, I feel lonely, anxious and restless.  I'm having great difficulty being motivated and staying in the present.  Then when I do get a break on Tuesdays and Thursdays when he's at his little school, I feel so incredibly relieved.  When I get sitters so I can go to therapy, get my massage or whatever, Nicholas usually loves it.  But, I feel guilty!  I feel like a bad mom or inadequate when I need a break from playing trains or his imaginative animal games.  I feel like I'm failing him somehow.  I still feel so clueless sometimes in my parenting.  I can see clearly who and what I do not want to be.

I don't want to:   -have the TV on all day

                              - leave him alone all day or ignore him

                              - yell, spank or shame him

                             - ignore him so I can do my own stuff

                             - squash his imagination/creativity and self esteem

I do want:  - to read to him

                     -encourage him to play independently

                      - give him uninterrupted time alone with me each day

                      - be silly with him

                      - set clear limits with him

I find this last one so difficult because sometimes I don't even know what is okay and what isn't.  What is good/normal parenting vs. what is poor parenting.  I'm very unsure and confused a lot.  When he ever said, "I need a new Mommy because you are always sick and have too many boo-boos", he really struck a chord in me.  I often feel very broken and incomplete because of my Fibromyalgia.  I'm so tired and sick, especially in this weather.  Just being sick causes me to feel inadequate as a mother.  Not to mention, as a wife.  Todd is pulling 90% and I'm only doing 10% lately.  More guilt.  Add to all of this my desire for another baby and the conflicting emotions that brings up.  Ugh.  I'm thinking of seeing a new naturopath.  The person I was seeing was so nice but just not a clear communicator and I really feel like I need a take charge, motivated person to help me to hope again. 

Is there a lost and found box for hope?