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The questions I hate most these days are ‘What are you doing? ‘, ‘So what have you been doing lately?’, and my all time fave, ‘So what is it that YOU do?’ (that one is usually asked by people I first meet in relation to what career path I’ve chosen)

What DID, DO, or WILL I?

Absolutely nothing, thanks for asking!!!

Well of course that’s not what I say…. I mean, not out loud anyhow. I usually say ‘not much’ or mumble how being a Mom keeps me busy (If they only knew my son is in Grade 5, makes his own lunch every day and is very independent outside of school.), or I try to just change the subject. ‘What are YOU doing?’ seems to be a good enough reply. People like talking about themselves generally, and are only too happy to take the focus off of me and onto themselves.

Ring ring…. Ring ring…. ‘Hey! How are you? Whatcha doing?’ is how many people start a phone conversation….

And by text, it’s know different. ‘hey? Are you busy? Can you chat?’

Aaaaahhhhhhhhhhhhhhh!!!!!!!!!

Now I don’t think I’m THAT cynical, but the more I’m asked that, the less I want to talk to anyone these days.

What seems like an easy and benign question to ask is one of the most painful ones for me to answer. It is extremely frustrating at times. And it is a daily reminder to me of WHAT I AM NOT DOING, and WHAT I CANNOT DO.

I am not driving a car.

I am not going to school.

I am not working, nor am I working towards a career….

Vacuuming? Nope.

Laundry? Not today.

Out with a girlfriend? There aren’t many of those left.

I can’t even chat about a funny conversation I had the other day. Chances are, the conversation did not take place!!

Unless you mean the conversation that I had with my body. I have lots of those. I just don’t like sharing them with too many people.

I sit for 6 hours every day. By myself. Sure, I knit, make jewelry, try to write…. I play with my sweet puppy… I eat lunch (usually). I try and make time go by faster…. And I take a walk in the afternoon when my boy gets out of school.

But there’s only so many times I can stand having conversation about WHAT I’m knitting and whether it rained or not on the way to school!!

This life isn’t just about the pain we feel, the medication we take, or the appointments we have to go to. It doesn’t just effect our HEALTH. It effects everything.

The next time you bitch about your job, or do the laundry…. Remember how privileged you are to be able to do those things.

The next time you want to share an absolutely fascinating conversation you had, or movie you saw…… Remember how lucky you are to share those things.

The next time you stress over your paycheque being too small.. Remember that you HAVE a paycheque, and celebrate the fact that you can earn one at all……

And if you are like me, know that you aren’t alone…. And the next time someone asks you what you’ve been up to ‘these days’, tell them you’ve been working hard. You’ve been climbing insurmountable obstacles and working hard to be the hero in your own life.

XOXOXO

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When you look at me,

there are many things that you don’t see…

You don’t see the millions of tears I have shed,

or the way my heart breaks each time my pain prevents me from

doing all the things that most take for granted.

You don’t see the many times I have had to cancel on my friends,

or eat my meals in bed.

When you see me smile,

you don’t see the intense pain that flows through my body,

every minute of every day –

the copious handfuls of pills I have taken,

or the way my pain breaks my Mom’s heart.

You don’t see the helplessness my Dad feels, or

the sad resignation my son has so maturely made

on days that I just can’t play with him the way he’d like me to….

You don’t see the midnight tears, and how my love wipes them away –

he hides his anger well… never angry at me but loathing the pain he cannot take away.

When you look at me you don’t see

how much courage it has taken me to get out of bed that day,

or how hard it is for me to make dinner for my family some nights,

or do the laundry,

and sneak in some errands before my body starts yelling for me

to stop.

You don’t see my freedom, or lack thereof…

the many times I’ve been disappointed,

the many times I’ve felt like I have let my family and friends down.

With that said, you also don’t see

how grateful I am,

to survive each day.

This is only a glance into a life with an Invisible Illness.

Some take life at face value,

those living with and

surviving

Chronic Pain

cannot.

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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HAPPY BIRTHDAY TO YOU!!!

HAPPY BIRTHDAY TO YOU!!!

HAPPY BIIIIRRRRTTHHHDDDAAAYYY

GRACEFUL AGONY!!!!

HAPPY BIRTHDAY TO YOU!!!!

CAN YOU BELIEVE GRACEFUL AGONY IS ONE YEAR OLD TODAY??

365 days ago, I made the commitment to myself, and to whomever wanted to take this journey with me that I would share my life openly, honestly, and completely, in hopes that I could somehow make my ‘Chronic’ life purposeful.

I nervously wrote my first post, and published it… and waited… I didn’t know if my words would be heard by ANYONE…

I wrote my second post… and my third… and the craziest thing happened!  PEOPLE FOUND MY BLOG!!  People were actually reading my words!!!

I very quickly realized I wasn’t the only one sitting ‘alone’ with my pain… There were so MANY people feeling the things I felt, experiencing the things I did, and crying the same frustrated tears I cried.

I FINALLY found a place where I was completely understood.  And it was the most overwhelming feeling I have ever had.  I cry at this moment as I look back upon this past year and reflect on how quickly my ‘heart’ changed, how my perception of my pain has gone through a metamorphosis,  and how the courage of others inspired me to find my own strength….

Shortly after starting this blog, I also started a facebook-based support group… and I don’t honestly know HOW, but people started to join… 15 members… 20 members… 30 members… People started to open up and share openly about their OWN lives with Chronic Illness and pain… And I made heart-to-heart connections with strangers from across the world who were suffering the same way I had been for years.  Who KNEW that these ‘strangers’ would end up being my dearest friends, and an integral part of my every day life. You all know who you are, and my heartfelt appreciation, and my utmost respect goes out to all of you… Thank you for making our family what it has become this past year… it is ALL because of you!!

Much “LIFE” happened in between writing posts, making friends, and sharing experiences this past year….

Some of us experienced great loss and began personal journey’s of grief…

Some of us found love…

Some of us lost it…

Some of us found hope,

and others needed the hope and strength that only OUR friendship could bring…

But through all of it, the one thing I know for sure is that we all got to ‘know’ ourselves in a way we hadn’t, all of us played a ‘role’ in our own as well as some one else’s healing.. and we all made a difference in the lives of the people we love.  WE BECAME SISTERS… united in something much stronger than illness and pain.

365 days ago I started writing as a way to reach out to others, and the most miraculous thing happened…. I ended up reaching out to myself…. I started a journey of my own healing, found strength I never knew I had, and found happiness in a way I never knew was possible while living in agony.

Because, in sharing my life with others, I found love, hope, forgiveness, patience, and tolerance for so many other people, and those people mirrored myself… By seeing my reflection in all of you, I found me….

It has been one crazy ride, hasn’t it?

290 posts

21,600+ hits

210 support group members

Invaluable lessons,

and forever friends….

THAT is how I measure this past year…..

Take a minute to reflect on the last year for YOU… and all the blessings, wonders, lessons, and love it has brought into your life… THAT my friends, is THE REASON…

Thank you so very much for following my journey this past year…

Thank you for reaching out and becoming a part of my life…

Thank you for your friendship,

Your support,

Your encouragement,

Your tears,

And your love.

AND HAPPY BIRTHDAY TO ALL OF YOU!!!

THIS IS YOUR CELEBRATION!!!!!!!

I hope the year ahead brings peace, healing, hope, and above all, a lot more love and friendship across the web, and in our homes and hearts.

NOW…….

LET’S PARTY!!!!!!

 

DOES ANYONE WANT CAKE??

QUICK, MAKE A WISH AS I BLOW OUT THE CANDLES!!!

XOXOXOXOXO

 

**If you are reading this anywhere other than http://www.gracefulagony.wordpress.com it is because this post has been stolen. Please click on the link provided to return to the site of origin

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Christmas tree in Bad Kissingen (2008)

Image via Wikipedia

The Christmas tree is trimmed…. Snow is on the ground…. The presents are wrapped (well most of them anyhow)… The Champagne and OJ are in the fridge…

And the Spirit of Christmas is beginning to fill my home…

My little dude is losing sleep over what EXACTLY is under the tree this year.  He keeps asking for clues, trying to get me to slip up and tell him “just one thing”.  He is wanting to open the Christmas crackers, and he wants to know if he is REALLY GOOD, can he open just ONE present on Christmas Eve…

His frenetic energy is tangible, I feel it in my gut, and I get goose bumps just thinking about watching him on Christmas Morn. THAT is my gift each and every year – Being able to experience the wonderment of the season through his eyes is the biggest present I could receive, wrapped up in love with a bow on the top.

My usual Christmas wish is for my son, and my family to have a holiday filled with joy, love, yummy food, and smiles… and each year I am never disappointed… each year my wish is granted.  What more could I ask for?

THIS YEAR my Christmas wish is a little different…. It is my wish for ALL of you, family included….

I wish for you to have ‘enough’… not excess, not too little, but just ‘enough’.

Enough hope to get you through the hard days…

Enough love to fill your heart…

Enough wisdom to help others…

Enough clarity to understand the difference you make in the lives of others…

Enough healing to restore quality of life…

Enough friendship to never feel alone…

Enough understanding to never judge…

Enough silence to reflect on blessings…

Enough patience to be gentle with yourself…

This holiday season I wish for all of you to have ‘Enough’.

 

Merry Christmas to all of my Graceful Agony family.  I will be carrying you all in my heart over this holiday season.

And thank you for the gifts you give to me each and every day.

 

**If you are reading this anywhere other than http://www.gracefulagony.wordpress.com it is because this post has been stolen. Please click on the link provided to return to the site of origin

 

 

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THIS IS THE LAST ROUND EVERYONE!!

ROUND 2 – THE FINAL ROUND OF VOTING FOR THE CANADIAN

BLOG AWARDS FOR 2010 ARE NOW OPEN!!

AND I REALLY NEED YOUR HELP!!

YOU MAY VOTE ONCE PER DAY, EACH AND EVERY DAY UNTIL OCTOBER 26TH

FOR GRACEFUL AGONY

in EACH OF THE CATEGORIES I HAVE BEEN NOMINATED IN!!

(just click on the links below)

 

I NEED YOUR HELP!!

YES, YOU!!!!


Are you on Facebook??? Please ask all of your friends to vote!!

Are you a member of a health related forum or message board?  Please ask them to come visit this site and vote!!

Do YOU have your own Blog?

Have you participated in the Graceful Agony Blog Carnival???

Feel FREE to make a blog post and include all the info here (copy and paste it if you want!)

Do you have friends or family that have been touched by a chronic illness or chronic pain?

Take this time to tell them how much you care – and let them know that I am representing the whole ‘Chronic’ Community in this Competition!

Do you have an email or twitter account??  Please forward this post!!

Forward it as many times as you’d like , get your friends to repost it and so on and so on…  😉

If you don’t believe that your vote won’t make a difference, please think again!

This has been an amazing opportunity for me, and I am honored to be included with some amazing bloggers!


My wish when I started Graceful Agony was to spread the word, and increase awareness on Chronic Illness and Chronic Pain.  I wanted to be able to light another person’s path through a life that is often misunderstood.  I wanted to leave my footprint, make friendships, and be a part of an amazingly supportive online community…. and THAT is the biggest gift in what I do here.  I get all of those things and so much more every day.

The rest is icing on the cake.

PLEASE GET VOTING, AND JOIN THE CAMPAIGN!!

SPREAD THE WORD!!!

VOTE!!!!

PLEASE!!

Thank you to everyone that has given me such amazing support and encouragement through this process.  Graceful Agony wouldn’t be a part of the world-wide web if it wasn’t for you.

You keep me inspired,

keep me coming back,

and keep me loving what I do…

In spite of Pain.

XOXOXOXO

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Ahh I remember the good old days… The days that existed before pain.  It isn’t easy for me to go back in my mind and think of those days very long.  It hurts.  A lot.  My body might not have any visceral memory of what it felt like to live without pain, but my mind does if I let it.

In those days the only limitations I had were cash (or lack thereof) in my pocket and a mandatory 4 or 5 hours of sleep per night, other than that the world was in the palm of my hands, or at least that is how I remember it anyhow…

I spent HOURS on the phone making plans for EVERY night of the week.  If I wasn’t out dancing, I was out for coffee with a girlfriend.  If I wasn’t out with a girlfriend I was enjoying the peaceful evenings browsing through the mall and fantasy shopping…. I planned vacations… I had friends… I had a social life… and then that all changed.

First I became a Mom, and settled down – but I changed my life because I wanted to…

Illness changed my life without asking my permission.

The things that I once loved to do hurt too much.  I couldn’t do them anymore.

No more dancing, no long trips to the mall, and coffee dates ALONE replaced those with friends because I never knew until the last-minute if I could go to a coffee shop or not… so when I can I just go myself.

I was thinking today about how I have changed my comfort level in the past 5 years… each time something gets taken away by my pain, I grieve over the loss – but I have no choice BUT to move forward somehow.  I have to move forward.  I don’t think I necessarily accept any of it, I think it is quite the opposite actually, but turning off somehow and becoming complacent is sometimes the only defense mechanism I’ve got.

So I numb myself out, and try to convince myself that I am fine just the way I am….

That I will never need anymore than what I have….

That my existence is completely fulfilling….

Until I realize that my comfort level is so teeny-tiny now, I don’t have room for anything outside of this little box.

I get up and spend the first hour of the day with my son and send him off to school, I take my meds, I sit on the couch and blog, email, read… and then I pour another coffee and knit for a while… and then I take more meds…. and then my honey leaves for work and I am ALL alone except for my pets…. and then I pour myself another coffee…. and then I get on the computer for a while…. then I go pick up my son, come home, and knit for a while before dinner… and then I take my meds…and well, you can just keep repeating that until bedtime save for a few moments that keep me sane.

My honey loves me immensely, and he gets me out of the house on his days off.

My little dude loves me too, and he likes to sit at the coffee shop with a book and a cookie while I get my java and a little background noise…

But it is all the same really.

When did I lose so much of myself?  Where did the fun-loving effervescent girl go?

She is hiding in the teeny-tiny box she put herself in…..

Now others may not see me this way at all, but you would have to ask them for I have no perspective than my own.  But when days turn into weeks, and week turn into months and the pain doesn’t let up – I brace myself against the world, I brace myself against EVERYTHING to protect myself from more pain.

Social anxiety replaces confidence….

And the teeny-tiny box gets even smaller.

But knowing the problem is half the battle as they say.

Maybe I need to change things a little for MYSELF….

 

Maybe it is time I get a little uncomfortable……

Because I’m telling you… Comfort sucks sometimes.

I miss me some days.

 

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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