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.

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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

I Don’t Know

How are you?

Are you okay?

I honestly don’t know how to answer those questions anymore. They seem like such benign questions. Any self-respecting gal would answer “I’m good!”, “I’m great!”, “Busy, but I am doing okay”, or at the very least, the dreaded “I’M FINE”. You know people are generally NOT fine when they say they ARE fine, however it is the socially acceptable and less awkward way to end the conversation. Regardless, most people come up with a response pretty quickly… Don’t they?

Yet, I am entirely at a loss when I am asked how I am doing these days. AT A COMPLETE LOSS. The best I seem to come up with, is the truth. After awkwardly looking at the floor, and nervously biting my lip my answer lately has been…

I don’t really know how to answer that question?

It makes some people uncomfortable. And that makes me feel even worse. But the thing is, I am not a very good liar. And I respect people far too much to lie to their faces. So what is a gal to do?

Do I tell the truth, and tell them that in some moments, I am barely hanging on?

Do I tell them that it is all I can do to smile in that moment, when the nerve pain in my body is so horrific, it is almost bringing me to my knees?

Do I let them in on the shameful secret I have? The secret that my brain sometimes doesn’t work, and I go into neurological meltdown. Putting sentences together can sometimes feel as exhausting as running a marathon. How do I phrase that, exactly?!

Do I explain that it may look like I am really anxious, but in reality, my resting heart rate is up to 130 beats per minute, because that is what pain does. It triggers every system, and it sets off a fight or flight thunderstorm in my body. I have ABSOLUTELY no control over it. I am not trying to look socially awkward, but it is all I can do to just concentrate on my breath, and hope I make it through today.

Because it sometimes feels like I won’t make it through today. Today sometimes feels too big, too loud, too scary, too painful to conquer.

HOW do I answer when someone asks me if I am okay?

I don’t know….. THAT is the answer.

I

Don’t

Know.

Here I Go Again – 7 Years Later

Well Hello there…

Here I am. 7 years and almost 36,000 views later. Who Knew I would be back here, again?

I didn’t think I would be back in this place. Graceful Agony is all but a memory to most. Life changed. We all moved on, in one way or another. My son has grown up. I am 11 years into my relationship with Tim. We have moved. I started working, after 17 years of being at home. I tried to build a career for myself. And I was living. REALLY living. Really, really living…..

I was living fully, with, or despite, or because, or with my pain. I can never be too sure which. Maybe it was all of those things, depending on the day. But regardless, my life was really full of all things ‘normal’, for the first time in almost 20 years.

It was too good to be true.

Like a house of cards, I came crashing down, as pieces drifted slowly to the ground.

Here I am. Back where I was.

Life-stealing pain, Hello again.

Hello doctor’s appointments, and waiting lists, and specialists, and medical tests. Hello again to the question’s that remain unanswered, the tears that are held back, the anxiety that is stifled, and the anger that hides deep inside.

Hello to the girl that I thought I had said goodbye to. The girl who was forced to live life on pause, for so many years. I didn’t think I would see you again. And yet, here you are.

Here I am.

Feeling like I am back at square one.

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….

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

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FRUSTRATION

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For the last 3 years I have been seeing a pharmacist/consultant and my Doctor on a monthly basis to try to come up with the right ‘cocktail’ or combination of medications to help me manage my pain.

It has been one of the hardest ‘tests’ of patience, and one of the most deflating experiences of my life.  Don’t get me wrong, I am not looking for the ‘magic’ pill to cure everything that ails me.  I gave up on that a long long time ago.  I know that I most likely will have to deal with all of these issues for the rest of my life, and for the most part I have fully come to terms with that.  I mean, what choice do we have, right?  Sometimes it is easier to let sleeping dogs lie, and not constantly poke them with a stick and expect them to remain peaceful…..

I do not remember a life before this one, nor do I remember what it is like to live without medication, but this journey has been really hard for me, and most days I feel like throwing my hands up in the air as a sign of defeat.  Sorry.  I am being honest here….  Let me explain…..

The first 20 drugs I was on, I went into the experience with a great deal of hope (and yes, I did say TWENTY drugs…. I have been on many many more than this even….).  Every time I was given a new drug to take, I felt ‘encouraged’ for lack of a better word… I felt hope that maybe THIS one was the right one for me… maybe THIS time I was going to feel better… maybe THIS combination was finally the right one…

But they never were,

and all of those drugs came with side-effects,

and when they didn’t work I would have to try to wrap my head around quitting them,

and not feeling like I had somehow failed..

Only to go through moderate to severe withdrawal/discontinuation syndrome…

Rid EVERY sign that my body ever relied on that particular drug….

just to do it all over again.  Whew!

Now maybe to some it doesn’t seem like that big of a deal… You go off of one, and go onto another, and all the while, keep your chin up, keep the house clean, keep the family happy, and sing la la la, all the home!!

Right?

WRONG!!!!

Maybe the first 20 times I tried, I succeeded in keeping it all in perspective, and had a smile on my face.  The days the smile wasn’t there, my Doctor just thought I was depressed and suggested yet another medication anyhow… So at best I kept a fake smile on my face to avoid ANOTHER PILL.

But after my Topamax NIGHTMARE (for those who don’t know, I wrote a previous post about my experience on this drug), I… well…. to be frank, I gave up trying, I hit a wall, I got really angry, and then I just became jaded about the whole thing entirely….. I also ran out of options….

I have been on every FDA approved drug there is in Canada for Neuropathy…. and none have helped…..

I have been on every pain killer that my Doctor will allow me to take (note:  I could still try a few that are FDA approved, but my Doctor won’t allow it).

I have tried numerous drugs and combinations of off label drugs, but they never really helped, and most just made me sick…..

And as my health declined, and I ended up with even more symptoms and problems, the drugs that were somewhat effective started being less effective, and then even MORE drugs were added to the mix…

STOP THE INSANITY!!!!!!!

One of the last drugs I tried was Cymbalta, and after having yet another horrid reaction, and an even more horrid withdrawal, I said ‘ENOUGH!!!!’  I am NOT playing this game ANYMORE!!!

Yes, I have been depressed at times, WHO WOULDN’T??  But it isn’t the kind of depression that medication will fix anyhow… I am one of those weird few who cannot take antidepressants don’t, they make me MORE depressed!  This type of depression is a result of medical treatment, not the lack thereof.

I JUST NEEDED A BREAK from the insanity that IS this Chronic Life!!!

So where am I now?

I am ‘maintaining’ the drug regimen that I essentially started out with!  LOL!  Really?!  All of that to end up where I was??  I guess I need to laugh, because if I didn’t, I’d surely be crying!  😉

I have run out of options in medication, so I am looking YET again for options outside the conventional medical world to help treat my pain, and I am taking a stand….

What I put inside my body is MY DECISION, MY CHOICE, MY RIGHT… As it is yours…

I have jumped through every hoop, dodged every bullet, and hurdled every obstacle that has been put in my way by Doctors, Specialists, Practitioners, Therapists etc… But now it is MY TURN to lead, and my right to be in control….

No more ‘cocktails’ for me right now, and no more new drugs… I know what is right for ME at the moment, and that isn’t it.  What may be right for me tomorrow might not be right for me today, but it is time for me to feel in control of my body once again, and lead this journey to recovery, and not be led anymore…..

It hasn’t been an easy road, for me, or for my family and loved ones… it isn’t easy to watch, I am sure you all can relate!!  In the process it is soooooo easy to lose SELF, lose HOPE, lose connections with others, lose IDENTITY…..

But one thing I know for SURE is, WE CANNOT DO THIS ALONE, WE CANNOT BELIEVE THAT WE HAVE FAILED, WE CANNOT STAND IN JUDGMENT OF OURSELVES, and WE CANNOT LOSE HOPE!!!!

So yes, I fall just like everyone else does…. and I am not positive all of the time…. but even when I feel like I’ve given up, I have to realize, I really haven’t…. I just need to find the right path…..

Just for today, change your perspective…. what might seem like INSANITY might just lead you back to a place you’ve been longing for….

Sometimes PEACE is better medicine than anything you have been prescribed…..

 

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