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Archive for the ‘ME’ Category

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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(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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Thanks everyone for all the support and encouragement you have all given to me this past week… I can promise you that is had made a difference… and I apologize if I haven’t gotten back to all of you… It has been hard enough treading water the past few days… I will get back to all of you, it just might take a bit of time…

It was a week ago that I threw my lower back out, and unfortunately not much has changed… I am getting through one minute at a time, looking for distraction, giving into my pain, fighting through it, sitting with it, ignoring it, getting mad at it… doing whatever I can in the moment to get myself through….

There has been some downfall after my joints gave up… subsequent muscle spasms, over-compensating, referred pain.. all the nasty stuff that comes with it… so what started out as back and hip involvement has turned into a really heavy all-over body pain… sleep is hard to come by, food only serves a purpose – to add something to my belly other than the caustic meds that are swirling around in there… and the smile on my face hurts… meaning… it isn’t a joyful smile, more a grimace with the corners of my lips turned toward the sky… I am trying people, I am really trying…..

I have a Doctor’s appt. this coming Monday, and I am already dreading it…  I know it is coming… I will be told again that the ‘professionals’ think I am depressed… and I am NOT… Do they understand that there is a difference between feeling desperate when the pain rises, and having uncontrolled emotion that has an effect on everything you say and do in your daily life?  To me, there is a HUGE difference!

You know, the normal questions they ask to try to gauge how depressed you are….

Are you sleeping?

Have your eating habits changed?

Are you finding that enjoyable experiences in life are dulled or unappreciated?

Um… HELLO?  DO YOU KNOW WHAT IT IS LIKE LIVING WITH EXCRUCIATING PAIN DAY IN AND DAY OUT?

Yes, my sleeping patterns have changed, only because when I crawl into bed at night the searing hot pain won’t let me turn off…

Yes, my eating habits have changed, because when it is hard to breathe, and the pain immobilizes you, it tends to take the enjoyment away from making homemade chili, with fresh-baked buns, amd a lemon meringue pie for dessert…

Am I finding that enjoyment and pride I should be feeling when my son brings home a 100% on his science test, or do I laugh when I am watching that funny new sitcom?

Well obviously NOT… but it isn’t because I am depressed!!  It is because my pain is all-encompassing!

Dinner tastes like pain

Bread baking in the oven smells like pain

The smile on my son’s face is beautiful, but the ‘pain’ glasses I see everything through blurs things a little…

My heart can SOAR with pride, but my body has a different visceral reaction, and I can’t control that.

Holding hands with my love feels great in my heart.. it however hurts my skin…

And I would be over the edge JOYFUL spending an hour in my jetted tub with my wonderful lavender bath salts… if it was by CHOICE that I was in there… if I was able to lay back and read in the tub with a glass of wine, instead of holding the edge of the tub white-knuckled, and rocking back and forth because it hurts too much to sit on hard porcelain…

Depression is a serious illness, it shouldn’t be taken lightly, and I commend EVERYONE who admits to struggling with it, and getting proper medical help… God knows I have been there before… IF you are there right now, I urge you to let someone IN and get help… PLEASE… Depressions isn’t something to mess around with…

What I am feeling right now is very different….

The difference is.. If my pain lightened JUST a little at this VERY moment.. If  I could flip a switch and INSTANTLY come down from a 9/10 to a 7/10 I would be the happiest girl on the planet…. IN AN INSTANT!!

Depression doesn’t work that way… It takes weeks, months and years of multi-modal treatment to be able to feel happiness and joy when you are really suffering from depression…  The road can be long… It has been for me anyhow.

All I need is a 15 minute break from this nasty winded feeling that goes along with intense pain…

I have a beautiful family, amazingly supportive parents… a man who is in LOVE with ME… the real me…

I have a precocious and brilliant and compassionate young boy, and he is my world…

I have a creative mind, a big heart, and I love myself more than I have ever done in my life.. I accept ME.. and it has been a long process getting there… 36 years to be exact…  I accept the ME that lives in Chronic Pain each and every day… and I try daily to make the very most of the life I have been given.

I have a network of inspiring and beautiful friends in my life, and I ‘belong’…. THAT is the most wonderful feeling.

So no, I am not depressed… I can see all my blessings…

There is just a wall of pain up between me and all of that…

Pain is the issue at the moment… Depression is not.

I just have to convince ‘them’ of that.

I want TREATMENT for my PAIN… I am not interested in taking a medication I don’t need.

I AM FRUSTRATED… and I am ALLOWED TO BE…

Wouldn’t ANYONE feel that way after 168 days of unrelenting pain? 7 days in agony and counting…. (Okay so it has been more like YEARS than days.. but I mean this past ‘flare’)

I am STILL blessed… I’d just like to get back to embracing those blessings…

I have a bear hug bubbling up inside me… I just need to be well enough to give it away.

**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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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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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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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!

THUNK!!!!

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.

THUNK!!!!

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.

XOXOXOXOXOXO

**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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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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