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

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

TWO STEPS FORWARD OR ONE STEP BACK?

 

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….

Related articles

• To Find the Best Pain Management for Relieving Your Chronic Pain (machinemakers.typepad.com)
• Pain Doctor, Pain Patient: How Chronic Pain Affected Howard Heit, MD (webmd.com)
• 11 Ways to Cope With a Lack of Fibro Support (fibromodem.wordpress.com)

Nothing, but THANK YOU for asking

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

What you don’t see… National Fibro Awareness Day

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

Today is National Fibromyalgia Awareness Day

(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

Related articles

• M.E. Awareness Week (feministphilosophers.wordpress.com)
• put purple in your profile: fibromyalgia awareness day, may 12, 2011 (phylor.wordpress.com)
• Thoughts About Where We Are on Fibromylagia Awareness Day 2011 (ohmyachesandpains.info)
• What About M.E.? (thelaughinghousewife.wordpress.com)

Agony on the 7th day…

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

Related Articles

• HAPPY 1st BIRTHDAY GRACEFUL AGONY! (gracefulagony.wordpress.com)
• The Link Between Pain and Depression (everydayhealth.com)
• Chronic Pain and Depression (everydayhealth.com)
• Fibromyalgia Symptoms And Treatment ???? (curesfibromyalgia.com)
• Thank You Graceful Agony Readers! (gracefulagony.wordpress.com)

A rough start to 2011

I must say, it was bitter-sweet to say goodbye to 2010….

Some incredible things happened in the past year, but I was knocked down more than a few times as well, and for that I was relieved to end the year and start anew…

It was a perfect dichotomy I guess… You can’t have one without the other, or you can’t appreciate the good without the bad… or whatever cliché is used to make one feel better….

I had the intention of writing about all the wonderful things that transpired over the past year, and a wonderfully cheerful look at the year ahead… but since we rang in the New Year, I can honestly say I haven’t had the head space to be ‘cheerful’… I will be completely frank… So far 2011 has been rough… really rough…  It has sucked… and I know I am not the only one who is feeling this way….

I was having a hard time managing my health before we went on our holiday the beginning of December… it was SUCH a great trip, and a VERY needed break… but it has been a solid month of pain and frustration since we have been back.

Who am I kidding?  It has been 10 months of solid pain without much reprieve, and I am REALLY feeling beat up and worn down.

When I first was diagnosed with multiple illnesses that lead to a life of severe chronic pain, I felt like something was being overlooked.. Yes, I have a very severe case of Fibromyalgia, with secondary neuropathy… Yes, I have Endometriosis with adhesions that haven’t been removed… Yes, I have other varied illnesses, disorders, or defects that lead to the intense pain I feel everyday… but from the VERY beginning, I have asked to have other things addressed… namely, my back and hips…

It took 26 months (18 of which I was misdiagnosed, and another 10 months on a waiting list) to have a lower back CT scan and x-rays done… and I was so hopeful that they would find a reason for my crippling pain which has caused me to walk with a cane at times the past 4 years… it showed NOTHING… and I was devastated…

Through the last 3 years of intense treatment and therapy, I have asked over and over for my back issues to be addressed more aggressively… I have been in physio many times, and from that and the support I have had by a  wonderful Chiropractor, I knew that I had developed some MAJOR ligament problems, but I have never been given a solution, or at least a proper way of dealing with it….

“Jolene, you have Fibromyalgia, which makes you hyper sensitive to pain that might not  necessarily be have a valid SOURCE.” I have been told many times…

BUT THERE IS SOMETHING ELSE GOING ON!!!!!

If I as much as isolate and tighten my glutes, I can completely dislocate my SI joints, THAT is how unstable my lower back is… I cannot do Kegal Exercises for my pain because that is enough to dislocate my SI joints as well…THAT is not Fibromyalgia…

When I can look into a mirror, and SEE a big sack of swelling over my tail bone… there is a VERY real source… you do NOT get inflammation just because….THAT is NOT Fibromyalgia…

When I put my arms over my head and lean over to do a gentle side stretch my hip rolls and POPS out of its socket… THAT is NOT Fibromyalgia….

When I can’t put any weight on my left leg for days, and all I can do is either tuck myself into the fetal position, or rock back and forth to distract myself from the 10-inch knife that is going right through my spine, there is something WRONG….

When my back becomes so tight that I have no choice but to over-compensate and end up pulling all the muscles in my groin and butt… that is NOT just being sensitive to pain.. there is something STRUCTURALLY WRONG WITH ME!!!

If I go a month without this intense back pain I am feeling like the luckiest woman on earth….  Sometimes I go TWO months without it… but when I feel the crack or pop I know in that instant I am screwed… and it takes days and sometimes weeks to recover… it is the kind of pain that isn’t touched by ANY medication, and the only ‘cure’ is to get it to POP and CRACK back into place… THAT IS NOT FIBROMYALGIA….

As some of you know my Dad had spinal surgery before Christmas, and he has been in a great deal of pain since… It has been a hard recovery for him, and he still has a way to go… If we can somehow make it easier on him, we will….

As a way for him to stay connected with his online illness community, as well as for him to stay comfortable, and avoid frustration, I talked him into getting a laptop.  I would be lost without mine, AND his computer had a lot of issues, and I believed he had to wipe out his hard drive anyhow…  It wasn’t worth putting in the time, money or frustration into it anymore….

This past Tuesday he had asked for me and my honey to come over and help him disassemble his PC, and drive him to the store so he could deal with transferring data to his new laptop.. And we were more than happy to help. I made the mistake of leaning over to pick up his PC tower and both heard and felt the CRACK…

I knew I was in trouble…

We barely made it home….

And I have been stuck on the couch, writhing in pain ever since…..

Ice, heat, meds, stretching, massage, baths, back brace… nothing is helping….

What a fantastic way to start the New Year!!!

So yes, it has been a rough start…. my nerves are frazzled, and they are in hyperdrive… every minute or so I get a wave of PAINFUL “Goosebumps” that make me want to crawl out of my skin…. My stomach is churning… and my get up and go, got up and left….

As my honey gently massaged my back last night I let out some hot frustrated tears, while he silently supported me and hoped to somehow make it better… HE can’t see me like this… My Mom and Dad can’t either… it creates this helpless feeling in everyone, including me.. I don’t know how to make it better…

THIS IS NOT FIBROMYALGIA!!!!!!

One thing for sure… I am getting down to the bottom of this.. I am not being placated anymore… I will not let them prescribe me yet another medication in the hopes that my body will become LESS sensitive to pain… THAT is not the issue, and I know it.  I just need to be heard… I have enough pain to deal with every day, I don’t need this…

Angry?  Maybe…

Frustrated?  Absolutely…

Have I had it?  In a heartbeat…

Will I keep on keeping on?  There isn’t a doubt…

I am not letting the system fail me again… not this time…  I am not letting them convince me I am just depressed, or that I need to exercise, or that somehow Vitamin D will make me feel better…

It is time to get down to the bottom of this…

Thanks for listening to me rant my friends… That wonderfully hopeful post for 2011 is coming… just not today….

 

**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

 

 

 

Related Articles

• When Fibromyalgia Painkillers Stop Working (everydayhealth.com)
• Fi bromyalgia Forums – Tired Of Suffering Fibromyalgia Chronic Pain Alone? (curesfibromyalgia.com)