Archive for the ‘Self-Care’ Category







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.



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.








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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.


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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(just click on the links below)



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.





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.


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Massage in Frankfurt, Germany

Image via Wikipedia

In the dance of ‘give and take’, if you are anything like me, you would rather lead than be led.  I admit it.  I am not a very good taker.  I think I have always been this way, I was programmed early that it was always better to give than to receive.  It is not something I ever begrudgingly did, I take great joy from giving!!  I am the one who will search for months for the perfect birthday gift for my Mom, or spend months making an end-of-the-year gift for my little dude’s teacher.  A desire to make others happy, combined with my perfectionist nature makes me one good giver…. but when the shoe is on the other foot I find it can be difficult.

When I became ill, someone apparently died and made me head-honcho and chief bottle-washer, as I decided then that it was my responsibility to carry the weight of the world on my own shoulders.  I don’t know about all of you, but for me, illness has come with a great deal of guilt.

If I can’t vacuum – I apologize.

If I can’t get out of bed – I apologize.

If it rains – I apologize.

If my second-cousin-twice-removed-has-a-friend-who-has-another-friend-who-has-a-dog-who-had-a-puppy-who-got-lost…. Somehow I feel the need to apologize for that too….

I think because I perceive that so many other people have to deal with my illness as well, I try to somehow protect and shelter them, and a part of that is trying to make their life better, and apologizing when my life sucks.

Does anyone relate?

That feeling pours over into almost every part of my life.  If I am late at responding to comments here – I feel guilty.  When my honey gets up and takes the little dude to school so I can sleep – I feel guilty.  When a friend offers to help me with my errands or drives me to a doctor’s appointment – I feel guilty.  When I am on the receiving end of most situations… well… You get the idea.


Fast Forward to last week.  Some friends of mine who are faithful readers here at Graceful Agony posted something on their Facebook that got my attention.  They had an unused Gift Certificate to a Salon and Spa that is about to expire, and apparently had little need for it.  So they asked if anyone wanted it – it would go to the highest bidder!

WELL!  It didn’t take me too long to jump on in!  I have been BARELY managing my pain for the last 3 months, and where I normally don’t have the resources for a lot of extra treatments, I thought that this was a chance for me to go for a massage for a little less money.

What I didn’t expect was for it to be free.

My beautiful friends got back to me right away and told me that they refused to take any money for it.  That somehow I deserved it.  They were GIVING me the gift certificate, no strings attached!


That is the sound of my heart falling into my stomach…..

I asked for them to take something… ANYTHING for it.  But they refused.  Not only did they want to give it to me, they also understood that I am not overly mobile and were willing to drop it off to me.


And my heart fell a little further… I was so amazed that someone would do something so kind for me…

And then the guilt set in….

I don’t deserve this.

I should be paying for this.

It is too extravagant….

That is what my illness would like me to believe.

My illness would like me to completely isolate myself from the rest of the world and not have those heart-connections with other people.  My illness wants me to feel bad all the time, whether there is reason to, or not.

I now have the gift certificate in my hands, and need to call today to book myself in for a massage.  And I reminded of a few things…..


Pain and Illness has taught me many things when I have stopped long enough to pay heed to the message.

I have amazing support and love out there.  I need to remember this feeling every time my pain makes me feel alone.

Just because I may not know my worth some days doesn’t mean others don’t either.  People don’t see me the way I see myself at times.  And their perspective is probably not as clouded as mine.

‘Just because’ might be the only reason someone else needs to be kind, and when you take away the opportunity for others to GIVE to you, you rob them of the wonderful feeling YOU get when you give to others.

The most valuable lesson for me is that I need to learn how to receive… Gracefully…

Thank you dear friends for not only treating me to a massage, but for teaching me a little more about myself.  I have learned many things this past week.

I guess THAT would make me the highest bidder. 😉

All my love to you both.


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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.


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Poll: Best Health Blog 2010 | Polldaddy.com (poll 3900946).

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Okay y’all… Today is the KICK-OFF to the National Invisible Illness Awareness Week!

From September 13-19th

I will be blogging in hopes that my words will

be heard by other Invisible Illness Sufferers,

so that they may know that they are not alone…

And by people who have never experienced an Invisible Illness so that I

may be able to contribute

to the awareness, understanding, empathy,

and compassion of Invisible Illness sufferers around  this world.

I am only one of close to 134 MILLION people

who wake up each morning,

and go to bed each night with

a prayer in my heart, and hope for us all.

My prayer is that one day we will all be treated with compassion and understanding…

We will be treated with the respect and dignity that we deserve…

And that one day we won’t have to live with the

Physical and Emotional Pain that comes with


I am dedicating my blog  this week to the millions of people who suffer silently……

and hope and pray that my words may be a vehicle to help bring about change.

To all of my beautiful friends in the online “Chronic” Community,

I raise my voice beside you and WITH you my friends….

There is MUCH strength in numbers,

and I know,

That our unified voice will eventually be heard.

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