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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.

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(This post is from last May 12th National Fibromyalgia Awareness Day)

Do you know what it is like to wake up one morning in agony and for that searing pain to never go away?

Do you know what it is like to have Doctors look at you like you are a crazy, drug-seeking, lazy person who just needs to “walk it off” when all you want to do is die?

Do you know what it is like to have everything robbed from you?

Do you know what it is like to lay in a glass coffin with your eyes open, and watch life go on without you – while you watch helplessly?

Do you know what it is like to have to grieve over the loss of yourself, and have to get to know a whole new you?

Do you know what it is like to have NO memory of being pain-free?

Do you know what it is like to lose relationships with loved ones because they just cannot see past your pain to find your heart any longer?

Do you know what it is like to never be able to find comfort in your own skin….. Never be able to let out a sigh of relief after a long day…. Never be able to get away from your worst enemy….. Never be able to be held by someone you love without it hurting??

Do you wake up in the morning and automatically put your feet on the floor without having to wonder if your legs will support you through the day?

Do you complain about rush-hour traffic, not having to think about how the extra 10 minutes in the car will affect your health for the rest of the day?

Do you walk by a stranger on the sidewalk and secretly wish you were them?

Do you know what it is like to be handed a life-sentence – yet you committed no crime?

Do you know what it is like to have to muster up every ounce of your courage to go to the grocery store…. a friend’s house… or even to the end of your walkway to collect the mail?

Do you know what it is like to have to say “No” over and over again – and have your heart-break each time because all you really want to do is say “Yes”

Do you know what it is like to live in a world that simply isn’t made for people like you?

I do…. This is my life… and it is the life of between 3-6 percent of the world’s population.  It is the life of anyone who suffers from Fibromyalgia, Chronic Fatigue Syndrome, and ME (Myalgic Encephalomyelitis).  It is a life of Severe Chronic Pain…. 24 hours a day…. 7 days a week….. 365 days a year.  It doesn’t go away on your birthday, anniversary, Christmas, New Year’s…. It doesn’t go away when you have had enough… when you are sick… when you are angry…. when you are sad…. It is constant and mind-blowing pain…. and there is NO cure.

We all are different – We have different dreams, different families, different lives… but the one thing we all have in common is that we fight for our lives each and every day, and fight to be understood.

We are human, we laugh, live, love, cry… just like everyone else… Only our journey through life is a little more complicated than some.

TODAY is the National Fibromyalgia/Chronic Fatigue Syndrome/ME Awareness Day – A VERY important day to all who suffer from these diseases… Please HELP US SPREAD THE WORD THAT WE CAN FIND A CURE!!!!

I urge you today to share this link with EVERYONE in your life… Wear PURPLE in Support of those who suffer….. Find another Fibro blog online, and leave a comment of support and encouragement, Call someone you know who is suffering, and let them know you are in their corner and will do anything you can to help them…. DO SOMETHING…. ANYTHING…. we need to spread the word and build a community of compassion… Pledge to be a part of the solution for people like me who live with severe pain every single day…..

Do you know what it is like??

If you do I honor you today, and want you to know that you are NOT alone….. I am here – waiting to ‘meet’ another member of this amazing community of people….

If by chance you don’t know what it is like, I urge you to close your eyes for a few moments and imagine what it might be like if you were to wake up one morning and have your like completely changed…..

When we try to understand with an open heart – we have the ability to break down walls.

**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

 

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Christmas tree in Bad Kissingen (2008)

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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.

 

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MS Oosterdam at San Diego port.

Image via Wikipedia

My pain woke me up before my alarm did… another really crappy sleep… I cannot believe I am still moving to tell you the truth, it must be the adrenaline…

I woke up before my boys did, and IMMEDIATELY made myself a cup of Starbucks coffee, which was complimentary in our room.  I opened the drapes and went out onto our balcony… and there she was in all of her glory…


The MS. Oosterdam, all 936 Feet of her, and weighing in at close to 83,000 gross tonnes, she is regal and definitely a site to see!!  For those who aren’t familiar, she is owned and operated by Holland America Line, and was christened in 2003 by Her Dutch Royal Highness, Princess Margriet of the Netherlands.  It is an absolutely beautiful ship, and awesome in the truest sense of the word… It is hard NOT to be in AWE of her…

To give you a little bit of personal background, my first cruise when I was 6-year-old.  I have been absolutely blessed in my life to have been able to travel.  It was, and still remains a BIG part of my education.  While back home my elementary school friends were comparing name-brand clothes such as Benetton (the United Colors of) and Esprit, I was experiencing a taste of 3rd world countries, and watching children my own age beg on the streets.  It is something that has stuck with me my whole life.

3 years ago my Dad was diagnosed with a terminal form of cancer.  It shook my family to its very core.  When hospital staff come into your private room and suggest you get your affairs in order, it is a clear indication of what your prognosis is… It was terrifying.

Because it has been years since we went on a family vacation, my Dad decided to book us ALL on a trip.  He very PURPOSEFULLY booked it a year in advance – it gave him something to look forward to, and something to fight for… and fight he did!!  We celebrated a YEAR after his diagnosis on the Oosterdam on a 7-day Mexican Riviera Cruise… and TWO YEARS later we are doing it again…  A MIRACLE!!!!!

Because my honey had never been on a cruise, it was SO exciting for me to be able to share every MOMENT with him!  I couldn’t wait until he opened his eyes, so he could take a first glance at the ship what we’d call home for the next week!!

After the boys were both up and at ’em, we got our luggage read to be picked up and taken to the ship, and made our way downstairs to meet up with the rest of my family.  We snacked on Banana Bread and Lemon Loaf, has another coffee, and toured the hotel once again before we got picked up by a shuttle which took us to the cruise terminal.

My honey was so in awe of the process, and my little dude was a CRAZY monkey!!  The excitement was tangible… You could feel, smell, and almost TASTE it….

The process of ‘checking-in’ was MUCH easier than I thought it would be, and before we knew it we were being called to board the ship!

 

(Insert Angels singing here… “AAAAhhhhhhhh” LOL)

We boarded, and after a slight emergency (Mom lost her purse!!  It has all of her ID in it, and we all panicked and stopped breathing the moment she realized it was gone.  She had to get off the ship and go back to the cruise terminal while we waited, and a million thoughts went through our heads.. An ANGEL turned in my Mom’s purse the MOMENT they saw it!  There are still wonderful people on this earth!!  THANK YOU to whomever it was who turned it in!!) we headed to the dining room for a special ‘Welcome Aboard” Luncheon.  At this point most of the people getting on the ship would go to The Lido Restaurant, an AMAZING buffet-style cafe.  Because my parents are seasoned cruisers, we got to sit down in the dining room and take it all in….

We began our meal with an Artisan Salumi plate, an appetizer consisting of cured meats, and freshly baked bread with the creamiest butter ever!!

We then had a cup of Cream of Broccoli Soup finished with toasted pine nuts.

For lunch I had the Mango Chicken Salad, while my boys decided on a less than standard cheese burger (even the burgers are First Class!)

And for dessert, a Fruit tartlette with creamy custard…. And just so you know, my family was SHOCKED that I didn’t pick the chocolate mousse!! 😉

After our bellies were full, and we had a chance to process the day so far, we headed to deck 4 to find our cabins!!!!

Stayed Tuned for the Second part of ALL ABOARD!!! Dec 4th

To Be continued…

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The White Rose Centre food court. Taken on the...

Image via Wikipedia

 

I went to bed really angry with myself last night.  It’s clear that I am still far too hard on myself some days….

I conserved ALL my energy yesterday because I knew we had to head out to the mall after we picked up our little dude from school.  I was really proud of myself that I had enough foresight to pace properly throughout the entire day.  Some days I am pretty good at doing so… Others, not so much.  But yesterday I was on top of everything (Or so I thought).  I made sure I took adequate medication, I made sure that I rested throughout the day… I even mapped out the WHOLE mall inside my head, from one end to the other, I had a map of where I absolutely NEEDED to go, and a corresponding list of things I needed to get.  THIS time a trip to the mall was NOT going to knock me on my rear… end…

I knew I was hurting really bad yesterday, but I wasn’t going to let it stop me.  I was going to be in control… I was going to be productive… I was going to conquer my pain….

Pulling up to the mall, I knew EXACTLY where I wanted to park, and where we were headed…. There was a method to my madness, and my boys, knowing me the way they know me, didn’t let out a peep.  We parked where I wanted to park, got out, and began our shopping excursion…

We were looking for a suit for Little Dude… he is 9.  Have you ever tried to find a good quality suit on a budget for an adult let alone a 9-year-old?  Can you say NO SELECTION!  The poor kid had to try 4 of them on in the first store we went too… and he wasn’t all that happy about it.  The first suit was WAS too small, so I had to go fetch another… The second suit was still too small, so I had to fetch another… and so it went.  By the time the fourth suit hit the change room door  I was starting to get cranky, and I had sweat dripping off my nose… So did my son….

So off to the second store we went….

Now I was REALLY starting to hurt by this time, and it kind of caught me off guard.  I mean of course I knew that I was sitting at about an 8/10 on the pain scale BEFORE we headed out to the mall, but I wasn’t going to let THAT get in the way.  Have I also mentioned that I can be really pig-headed as well?  Sorry, it runs in the family. 😉  My legs were REALLY burning, and I was really confused.  Why all of a sudden are my most comfortable boots feeling like 6-inch stilettos?  Go figure.

I started to walk faster….

I needed to get to where we were going as fast as I could because I already felt like time was running out, and I had 11 other things on my list to still do…

We ran up to the children’s clothing section, and I started to grab suits off the rack in a frenzy… trying not to grunt and groan audibly as not to tip off my honey that I was already done in…

The first suit didn’t fit….

The second suit didn’t fit…

The 3rd pair of pants fit, but the jacket didn’t…

Okay, I am on to something, or so I thought.   Maybe I need to buy the pants and jacket separately, so I head off to the coordinates…

The 4th pair of pants that were the same size as the 3rd pair were and they were WAY TOO BIG!!

Oh lord, how am I going to get through this…. I started to feel a lump well up in my throat… I can’t cry in the Kids Department of Sears… I CAN’T CRY IN THE KIDS DEPARTMENT AT SEARS….

My honey, feeling my stress level spike, started looking through racks himself….

My son sat down pant-less in the change room, and waited as patiently as he could….

By the time we were on our way to finding SOMETHING that worked, the change room looked like a bomb hit it, and there was a trail of navy and black fabric out the door.

We ended up with 2 pairs of pants that fit, and 2 shirts that fit… No Jacket.  I felt like I had failed.

The boys were getting hungry, so we paid for our purchase, took the pants to the tailor so that they could be hemmed, and then we decided we were going to head to the food court… GREAT IDEA!  It would give me a chance to sit down and catch my breath!

But we never got there….

Now I am one to almost always push through just about anything when I can, because I very well know the feelings from living the opposite way.  I once spent over a year being almost entirely bed-ridden, and it was the hardest time I have ever gone through – to date.  I am usually the LAST one to admit when I am NOT okay… But my honey knows me so well, there isn’t much I can get by him.  A quarter of the way to the food court, as I was limping and now grunting with almost every step, I asked him to please slow down….

He said “That’s enough.  We are leaving.  We can do EVERYTHING on this list another day”.

I got mad.  REALLY MAD.  But not mad at him.  I was really angry with myself.  WHY couldn’t I suck it up just long enough to get my son a burger and go look at shoes?  Why can’t I just look like all the other busy Moms that were fluttering about the mall?  This was NOT the plan.  I was supposed to conquer my pain, conquer the MEGA-MALL, Conquer the line up at the Food Court, and STILL have enough energy to find a cute pair of kitten heels and have a wonderfully relaxing glass of wine with my honey when we all got home.  And instead, I am near tears, black circles around my eyes, limping back to the car as my boys were trying to hold me up.

Grrrrrr………

This is so unfair.

By the time we got home, I was doing everything I could to just hold on.  My heart was racing, and the pain was so bad I was praying out loud.  My little dude should have been proudly putting his new clothes away, and instead he was concerned about me… My honey stood by helpless, asking me what he could do to help… ANYTHING he said, just tell me how to not feel so helpless….I felt like a failure again.

Once I got my meds on-board, and my little dude off to bed, I sat down on the couch, and checked my email, chatted with an old friend, and went to bed.  All the while I was fuming, I was just so furious with my LACK of control.  I laid in bed in the dark and starting talking to myself, and realized that I NEVER had the control in the first place.  And being a failure is not a part of this equation.  I can only ever do my best.  Some days my best doesn’t look the way I want it to, but I need to accept that it is all I have got to give in this world.

Today, I have made the commitment to more gentle with myself.  Jolene, BE MAD AT YOUR PAIN – but don’t get mad at yourself.  They are not the same… That has been my mantra for the past few years, but I am human, and I make mistakes.

I thought that I had already learned that lesson,

I guess I still have a long way to go…

 

psst… Have you voted today for the Canadian Blog Awards?  Please click on this link for more info: The final Round of Voting has begun! and thank you all so very much for all of your support!!

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