HOPE hides everywhere

So, it has been a tough week…. it has been a tough few weeks. WHO am I kidding?!? It has been a really hard few years, if I am completely honest. That isn’t easy for me to say. I tend to be the ‘glass half full’ sort of gal. You generally won’t see me without a smile on my face, even when I am in agony. I work hard to make other people comfortable with my pain, even if that means I am more uncomfortable, myself. I try hard to push through everything the world throws in my direction. But this past year or so? Ya, no…. I have been REALLY struggling. I am not always wearing my happy pants. I have hit some really low lows. When, in my quietest moments, when I am brutally honest with myself, I am often scared of how bleak life looks for me right now.

It has been a TOUGH and exhausting few years.

I won’t go into the dreadfully boring details. But suffice to say, my family has gone through every type of stress possible. Death. Unemployment. Taxes. Sickness of loved ones. Finances. Health issues. Losing our home. Crisis. More health issues…. combined with wrapping my head around things that most people will only ever see in made-for-tv movies (I will get into that later, I promise). Without a break, the waves have kept rolling in, and it is all I can do to take a quick gasp for air before I am underwater, again and again,and again. It sounds awfully dramatic, but that is exactly the way it has felt. This has been my life for the past 2 years.

And it just doesn’t end. Or it hasn’t, quite yet…

I try hard not to be jaded. I promised myself many years go that I wouldn’t let the struggle harden me. But I’m human, and it is impossible somedays to NOT feel like I am giving up hope. It often feels like life will never be any better than it is right this second. There are moments lately, where I have just wanted to throw my hands in the air and through angry tears – just SURRENDER.

I GIVE UP! OKAY?! YOU’VE GOT ME! I SURRENDER! I concede to this unhappy, unhealthy, anxiety and pain-filled life! IS THAT WHAT YOU WANT TO HEAR?!? I. GIVE. UP.

Can anyone relate?

But wait….

As soon as I have felt myself give in lately , I have been met with small expressions of grace and hope. At first, I thought it was just a coincidence. But I am starting to realize that I am seeing these reminders of hope because my heart is still open to receiving them. No matter how cynical and angry I feel somedays, no matter how cheated I feel, no matter how alone I am with my pain, I see hope hidden everywhere. And THAT is not lost on me.

These small offerings the Universe keeps throwing at me have kept me going on days I felt like I couldn’t face the world. They have kept me going through some brutally hard and serious medication changes, And these signs often appear when I am in so much pain, I can barely breathe. It occurred to me last night that these moments have allowed me to create a safety net, so I don’t plummet when I fall. In my mind, I have woven a protective mesh made out of kindness of others, graceful interactions, and moments in time where I have felt unconditionally loved.

HOPE HIDES EVERYWHERE.

– To those who have left me messages on my Facebook wall – you make such a difference in my world.

– To those who have offered me a gentle hug – you make me feel worthy.

– When you smiled at me when I got up from my chair, your eyes told me you were proud of me for not giving up. You could see me wince, even though I thought I was hiding it well. But you let me save face in that moment. Our eyes met and I saw compassion, not pity.

– The thoughtful gifts that were left for me at work – they reminded me of how much I am loved and valued, as I am.

– The stickers that you thoughtfully picked out for me? Well, that small gesture wasn’t small at all. The phrases on those stickers reminded me that I am so much stronger than I realize, no matter how I feel in this moment.

– You, who called me Sweetie as I walked out of your office… You said SO much in that one word. I knew what you meant, and I felt it. That one endearing word really meant ‘I have your back, and I am rooting for you’.

– When you called me your best friend, it was your way of telling me that no matter how tough life gets, you are not going anywhere. I shouldn’t worry. You are my constant.

– You, who texts me almost every day to check in on me, just to ask me how I am feeling… It is because in that very moment when I am in your thoughts, I am the most important to you. And that means more than you will ever know.

– When you told me the podcast you are listening to, I smiled, because I know you are investing that time everyday, because you think it will help me somehow.

– And when you said you still thought I was a ‘cool mom’, what you actually meant was the last few months of pain haven’t changed how you see me, and my struggle with pain will never change that.

When I am filled with despair, and think I am right back to where I began, many years ago. I need to remind myself that this is not the case. I would have never stopped to take in all these moments of grace, and find HOPE in all of them. And THAT means something. Really, that means everything.

Just for today, with an open heart, look for signs of hope in your own life, and in your own journey.

HOPE hides in the tiniest of spaces. We just need to take the time to stop and look.

Hope truly does hide everywhere….

– Jolene xoxoxo

If you are looking for a community of others who are dealing with pain and illness, come follow my new Facebook page! Graceful Agony On Facebook

Alone

LONELY.

DEJECTED.

ISOLATED.

SECLUDED.

WITHDRAWN.

If you are in emotional or physical pain, you can relate to these feelings all too well. I know you can, because I can too. It seems to go with the territory. But does feeling lonely, in fact, mean you are alone?

Pain can be the greatest and most powerful isolator. In a room full of people, I can feel all by myself. There is something entirely disconnecting about being stuck inside your own pain bubble, when the people around you are going about living their lives. It can be paralyzingly. God, I have been there more times than I care to admit. It is like a time-lapse scene in a movie, where the main character is frozen still, standing on a sidewalk. Everyone is moving around them at rapid pace. The cars are all zipping by, people are hurried and dart around them, completely unaffected. The sun rises, arcs in the sky, and then sets – while they just –

Stand.

Invisibly.

Still.

But really that character is you, and this isn’t a movie. This is real life. And THAT is how it feels.

It doesn’t seem to matter if the pain is physical in nature, or emotional – it feels the same. I can be having a really bad pain flare or a high-octane bout of anxiety, but the result is the same. I feel alone. I feel like life goes on without me. I feel invisible.

But this is something I know for sure, after many years of this struggle.

I AM NOT ALONE. No matter how lonely I can feel.

THIS FEELING PASSES, even if I feel like time stands still.

I AM NOT MY PAIN, even when every cell in my entire being feels it. I am so much more than what I am feeling, in that moment. WHAT I feel is NOT who I am. And I often need to remind myself of that.

ALONE AND LONELY MEAN TWO DIFFERENT THINGS.

While pain can be lonely, I am far from alone. If you are reading this, that means you aren’t alone either. We have each other. And one by one, we can build a community of understanding and compassion, if we just have the courage to open ourselves up to those around us, and let them in. We are so much more alike than we realize. We are so much MORE human than we think. And we have SO more that connects us than divides us, if we just find the strength to be vulnerable with others.

If time stands still for you today, please know, there is ALWAYS, always someone who is willing to slow down and wait…

I tried. I really did…

I tried. Oh god, I really tried. I went into work yesterday.

I work as a Legal Assistant, and my health has greatly affected my ability to work the past few months. It’s been really very embarrassing to me. I went from working 4 or 5 afternoons a week for the last couple of years, to taking 5 straight weeks off of work, to now – I am only able to work one afternoon a week.

I give 100%. And I will be the first to admit that my 100% can look very different from day to day, depending on how I’m feeling. I know I am not perfect. I make mistakes. I have limitations. Regardless of all of that, I take a lot of pride in what I do. And I will tell you why.

I couldn’t work for 17 years of my life. Most of that time I was either Completely bed bound or house bound. I said goodbye to the possibility of post-secondary schooling and ever having a career. My pain didn’t allow me to think too far from my own 4 walls. And I can tell you, being at home for 17 years, by circumstance and not by choice, wasn’t easy. In fact, it was one of the hardest parts of all of this, for me. I wanted so much more for my life, but could never see how that would ever happen. I had plans of getting my degree in Psychology. I wanted a career in serving and helping others. Especially those who don’t have the tools to necessarily help themselves. But after one semester of post-secondary schooling at Athabasca University, I dropped out, and buried the dreams I had for myself.

Fast forward to 3 or so years ago, quite by chance, I met a gal who, at the very moment we said hello, I KNEW she was someone I was connected with. I can’t say for sure WHY or HOW I felt that way. But it was undeniably kismet. Or serendipity. Or something inexplicably purposeful. Anyways, we became friends, and I often thought that my meeting her wasn’t just a coincidence. She was someone I shared my health struggles with, right away. And her response was the biggest and most loving hug I’ve just about ever had.

I was in a position where I needed to work. My family had run into some tough times, financially. The THOUGHT of trying to look for a job with a 17 year GAP on my resume was TERRIFYING. I had no idea where to start, so I reached out to this friend and asked if she would consider writing me a letter of reference. She was someone I admired greatly, and my hopes was that a letter from her might help me find a job, any job! Fast food, retail, grocery store, maybe a clerical position – I would have taken anything in that moment. I just really needed to be working.

Her response?

‘ You know my husband is a lawyer, right? I was just thinking about you. We need some help in the office. Would you consider coming in for an interview?’

EXCUSE ME?!? ARE YOU SERIOUS? You are looking for a Legal Assistant?! And you thought of ME? You want ME to come in for an interview?!?

In that moment, my pain spoke, and spoke LOUDLY. It told me that this was way too good to be true. It told me that there’s no way I could handle working in a law office. Pain told me that I was not good enough, or smart enough, and I should really just politely decline. However, my heart told me YES, JOEY DO IT!! Do. It. You will never know until you try!!!

The interview was brief. And I started immediately. In that moment, my friend and her husband took a chance on this sick and complicated girl, and entirely changed my life. It has been 2 years, and I have never looked back.

My ‘boss’ and his wife have become family to me. We lovingly call them Papa and Mama ‘T’ at the office. They very much understand that my health comes first, and without them, there is no way I would be still be working. They have been extremely patient, loving, and incredibly supportive. And I’d be lost without them! I really do know how lucky I am, believe me. I thank the Universe daily. And I try to remind them often of how grateful I am for their patience, understanding, and unconditional love. Although, I don’t know if they will ever truly know just how much they mean to me. It’s hard to find a card at Hallmark that says, ‘Hey thanks for taking a chance on me and putting up with my pain and illness, and for always letting me take care of my health first, while teaching me to become someone I always ALWAYS wanted to be, and allowing me to be a part of helping and serving others so I can feel like I am making a difference in this world, and at the same time, loving me fiercely, standing by me, and adopting me as your own’. Whew! Ya. I looked for that card. It doesn’t exist.

Well, as I said, I went into work yesterday. And quickly, I was in tears. It’s been a really rough few months. My pain has been out of control. I haven’t been able to sleep. But I tried. And it didn’t work. So I went home and spent the rest of the day in bed. I had to force myself to listen to what my body needs. Some days, I just cannot push through, no matter how hard I try. And even though I hate it. That’s the way it is.

But do you know what?

Today is a new day. And I am determined to try again. So I am headed back in to the office. I need a do-over of yesterday to prove to MYSELF that it is possible to keep going. It is okay to falter. But it isn’t okay to quit. So off to work I go! I’ll try my best. And that ‘best’ might look different than it did yesterday, or last week, or last month. But it’s all I have to give.

And I will.

Are YOU on Facebook?!

If you are in Facebook, I have started a new Facebook page for this community!!! And I have some cool things in store!!

Articles, live videos, Q&A sessions, check ins, fun ways to cope when you’re feeling those pain flares, and so much more more!!!

Head over to www.facebook.com/gracefulagony and follow my page! Share with anyone you know who suffers from chronic illness or chronic pain! Or if you are someone who cares for someone who is dealing with these issues, you are invited too!

I can’t wait to see there! Please feel free to introduce yourself! I would love to meet you!!

Xoxo – Jolene

New Beginnings

I have been looking over old blog posts the past few days, and found this from 2011…

It hit me like a tonne of bricks, and it wasn’t triggered or brought on by anything specific… it just came out of nowhere…I struggled to choke back my tears in an attempt to hide my overwhelming feelings from my honey. But, as always, it didn’t work, and quite shortly after he had kleenex in hand as I let out some tears on his shoulder…. He asked me what was wrong, and I couldn’t really give him a straight answer, other than I get really tired of all of this some days.. Gone are the days that I have any memory of what it is like to live a life without pain… and for the most part I have accepted that. It took me a LONG time and a lot of work to get to this point – but I do know the chances of me living without pain are slim. I have moved on from searching for a cure, and now try to focus on MANAGING the best I can with what I have been given… but some days it feels like what I have been given is a sentence of a life behind bars… only it isn’t iron and steel that keep me imprisoned, it is pain and medication.’

It made me think of how far I have come in the last 8 years, yet how I am still in the same place. I HAVE evolved and grown so much during this journey through illness and pain. And yet, like grief, the process is never actually complete. And in moments, I am back to exactly where I was so many years ago – on the couch, tears in my eyes.

I AM still really tired of all this, some days. And I am still beyond the point where I expect to live the rest of my life without this pain. Unfortunately, hope dies. Or rather, realism becomes a more solid foundation to continue building your life around. It becomes too painful to HOPE that this will be any different than it’s always been. Because it never really is any different. I just have periods of time where I cope better.

Some days this feels more like a sentence, and less like a life. And that just isn’t good enough for me. It feels like time wasted, life not lived, memories not made, and potential wasted – I am 45 now, and this is the only life I have to live. I keep saying it, but it is so true, I don’t want to live my life on pause.

So I am BACK. Graceful Agony is back. My desire to build a community of compassion, understanding, and growth has returned. I KNOW I am not alone. I know I can contribute to this world. I think my story may resonate with others. I, at least, want to try to give back what has been given to me. I believe, at our lowest moments, we are so much more than we realize.

So….. Keep your eye out for some new and exciting things from me! I may be several years in to this journey, but really this is only the beginning. I have barely scratched the surface.

Xoxoxoxo – Jolene

HAPPY 1st BIRTHDAY GRACEFUL AGONY!

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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My Christmas Wish

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.

 

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ALL ABOARD!!! part 2

It is easy to get lost on the MS. Oosterdam if you aren’t paying attention… I honestly don’t know how people find their way around the HUGE Superships that are 4 times the size of our ship!

We made our way to the 4th Floor – The Upper Promenade Deck, and very happily found our cabins… 3 in a row on the Starboard side of the ship.

If you have ever been on a cruise ship, you’ll know that the cabins are cozy… There are 2 beds convertible to a queen-size bed, bath & shower, sitting area which has a hide-a-bed couch, private verandah, floor-to-ceiling windows.Approximately 254 square feet including verandah.  They aren’t huge by any means, but if they are organized correctly, they make a comfortable home away from home.

I had to share the next picture because it makes me LAUGH every time I see it!  This is Tim standing in the shower in the our bathroom.  When I say ‘cozy’, by my 5’3 standards it truly is.  For Tim, who is over a foot taller than I am, ‘cozy’ takes on a whole new meaning!  LOL!

 

Our luggage wasn’t in our cabin when we first arrived, but within minutes there was a knock on the door, and our suitcases showed up, one by one.  We buzzed about the 3 cabins, comparing them, and the boys went out on the balcony to sit in the sun while I started unpacking and organizing the closets…

I couldn’t WAIT to show Tim the rest of the ship, and explore every nook and cranny!  But before that, we had to take part in the Muster Drill.  It is a safety drill that by law you have to participate in at the beginning of every cruise.   We went and found our Lifeboat, #11, and then we were off and running!

Michelle, our wonderful travel agent, surprised us with a few extra goodies, including a special dinner to start off our cruise, in the Pinnacle Grill.  On a cruise you have different options for eating meals.  If you want a casual eat-anytime meal, you can go to the Lido deck and eat at the buffet, you can also eat in the dining room for more formal service, but the cream of the crop is the private restaurant known as The Pinnacle.  I REALLY wanted to experience eating there, so I was both pleasantly surprised AND excited that we would be eating our FIRST dinner there…. We cleaned ourselves up, went on deck to see the ship pull away from the terminal….

 

Bon Voyage!!

And then we headed down for dinner….

The Pinnacle is only something you can describe as opulent…. It has over-the-top decor, but it isn’t ‘tacky’.  It is very well done, down to the silver chairs and the artwork, it is something that would be considered ostentatious anywhere else…I thought it was beautiful.

I soon realized that I had NO self-control after looking at the Menu… It all sounded SO yummy!  It was so hard to decide!!

I started with an Amuse Bouche, a tasty morsel to wake up my taste buds!  It was a sea scallop with a pumpkin puree… unusual, but really good!! Next I had the lobster bisque… and I thought I had died and gone to heaven… it was SOOOOO good!  Tim agreed, as he ordered that too, but my little dude enjoyed a Prawn Cocktail, and the prawns were as big as my fist!!

 

Tim and I thought we would pace ourselves and SHARE an order of crab cakes, but we a bite in we wished we had ordered them for each of us.. they were decadent with a crispy panko breading, with sweet and rich crab inside, they were perfect!  Oh how I wish I was still on the ship… 😉

For dinner I had the “Land and Sea” – or in other words Steak and Shrimp.  I choose the creamed spinach and rice for my sides, but I had to try my sister’s Lobster Mac and Cheese… It was the richest dish on the table, much too rich for my tummy, but it was delicious!

Tim had the Steak Dianne, and it was so much fun to see it flambeed table-side!  I wish I had taken pictures!

And to end off a WONDERFUL MEAL, I chose the Baked Alaska with Cherry Garcia Ice Cream and Flambeed Cherry Sauce… SOOO SWEET… SOOOOO RICH… and TOOOO MUCH… I only ate half my dessert, and washed it all down with a decaf Cappuccino.

 

I did make a mental note that if I was lucky enough to go to the Pinnacle again, to order the Creme Brulee… Tim and my Dad both  had it, and it looked incredible..  It has a perfect sugary crust, and was served in 3 different flavors….Oh Lord… I resigned myself to taking home a few pounds extra…

All of us were really tired after a very long day, and we were all STUFFED.  We said Goodnight to my parents, and after a chilly walk on the lido deck, we also retired to our cabin.  The beds were turned down, chocolates were left on our pillow (like we needed any MORE calories), and with 2 days at sea, we knew we didn’t have to set a wake-up call…. ahhhhh…. I hoped to have a LONG and restful sleep.

I was so incredibly sore, but so very happy to share these memories with my family.

Buenos Noches everyone…..

 

To Be continued…

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