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Archive for the ‘Chronic Illness’ Category

 

I have learned that this journey through chronic pain and illness is a bumpy one.  It isn’t a process where you learn something, and then you never have to address that part again…. As time goes by and my illness evolves, so does the process…. and I find myself having to re-address things over and over again while trying to look at things from a different perspective each time.  What have I missed?  What did I not learn the first time?  Has my illness progressed since the last time I had to face this particular issue?  Have I matured since the last time I faced this particular issue, so maybe there is something different to learn this time?……. It sure isn’t like riding a bike.  You don’t get back on and just know how to pedal…. it is different every time.

These past few years have been really difficult for me, and my pain has slowly gotten worse and worse.  Every medication I have been on has either stopped working, or just never worked to begin with.  Emotionally, I have gained many tools to deal with living this life, but physically a body can only take so much….  I was really fighting that point, and thinking that I could take it all on, but the proof is in the pudding so to speak.  I have back-slid.  And requiring extra help was something I didn’t think I would have to think about…. until now….

When I first became really ill, it changed life completely.  And not just mine, it effected my whole family.  After being misdiagnosed for close to 2 years, having exploratory surgical procedures, being bed ridden, I finally got into a place where I live called the Chronic Pain Centre.  It is a government-funded, multimodal clinic for people who suffer from severe pain.  The day I walked into the clinic for the first time changed my life.  I walked in as a desperate girl so badly wanting to believe there was a ‘cure’ for me, and I walked out knowing that I may have to deal with this for the rest of my life.  It was completely overwhelming…..

I ended up being a patient there for 3 years.  I saw pain specialists, physiotherapists, kinisiologists.  I saw nutritionists, worked with the pharmacists, saw a psychotherapists, and worked hard for those 3 years to understand every aspect of illness.  It was a full-time job, between the ‘group’ lectures I attended, sleep seminars, reading, weekly psychologist appointments, weekly physiotherapy appointments, and that doesn’t even include the appointments I had with my Doctors…..  It was a HUGE commitment.  In some ways it has been the biggest commitment I have ever made to myself.

I crawled…. and then I toddled…. and when I cold finally walk on my own, I ‘graduated’ from the program and thought I was on my way to living in SPITE of all of this…. If this was the hand I was dealt, I thought I had found as much acceptance as I ever would, and I was relieved and excited to move from that program and to live life on my own terms…..

That was close to 4 years ago, and after much time, suffering, frustration, and failed attempts to manage this on my own, I had a heart to heart conversation with my Doctor, and she has referred me BACK to the Chronic Pain Centre.  And I honestly don’t know how to feel about it….

Part of my is relieved, as I know I can get help there that I cannot get on my own.  I won’t have to worry about the expense of therapy, and the impact it can have financially on my family.  I am in a MUCH  better place emotionally now than I was when I first went through the program, which leaves me to believe that I am more ‘ready’ this time around….  But I am also really sad to find myself back at the starting gate.  I was hoping I would never have to go back there.  I was hoping that SOMETHING I had done or tried in the last 4 years could have been the answer… my answer… and the truth is, no matter how much it hurts to say it, I just haven’t found my answer yet.

It is going to be a big commitment to make, and no doubt it will impact my family again… but I hope that the positives will outweigh the negatives.  I hope that maybe, this time, they have more answers, more solutions, and more ways to help me ‘deal’ along the way…..

Is it a step forward or two steps back to have to enter this program as a patient again?  I am not sure how to answer it.  I guess it depends on what day you ask me that question.  I feel really conflicted….

All I know is that I don’t want to have to live like this forever.  And I am not going to stop fighting….

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

What DID, DO, or WILL I?

Absolutely nothing, thanks for asking!!!

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

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

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

Aaaaahhhhhhhhhhhhhhh!!!!!!!!!

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

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

I am not driving a car.

I am not going to school.

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

Vacuuming? Nope.

Laundry? Not today.

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

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

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

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

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

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

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

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

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

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

XOXOXO

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When you look at me,

there are many things that you don’t see…

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

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

doing all the things that most take for granted.

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

or eat my meals in bed.

When you see me smile,

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

every minute of every day –

the copious handfuls of pills I have taken,

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

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

the sad resignation my son has so maturely made

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

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

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

When you look at me you don’t see

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

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

or do the laundry,

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

to stop.

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

the many times I’ve been disappointed,

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

With that said, you also don’t see

how grateful I am,

to survive each day.

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

Some take life at face value,

those living with and

surviving

Chronic Pain

cannot.

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

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(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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Christmas tree in Bad Kissingen (2008)

Image via Wikipedia

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

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

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

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

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

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

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

Enough hope to get you through the hard days…

Enough love to fill your heart…

Enough wisdom to help others…

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

Enough healing to restore quality of life…

Enough friendship to never feel alone…

Enough understanding to never judge…

Enough silence to reflect on blessings…

Enough patience to be gentle with yourself…

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

 

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

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

 

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

 

 

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