Pain Awareness Month

Note: I posted this last night and for some reason it disappeared. So, sorry to all of you who are getting double notified of this post.

I haven’t been in a blogging mood the past couple of weeks. There are so many things that I desperately want to say but when I ready myself to write them down nothing comes out the way that I feel it or want it to.

Anyways, what I do want to write about is the fact that September is “pain awareness month” and I can’t not acknowledge it. It’s a sad thing to dwell on, really – the reality of just how many lives are being severely altered and often ruined by chronic pain. Why is this becoming such an epidemic? And more importantly, what can we do to change that? Ignoring the fact that this cause is extremely personal to me – as someone who suffers from chronic pain herself – I think that we owe it to each other as human beings to find out why our friends, parents, grandparents and children are being affected by this debilitating condition in such large numbers.

For those of you who might not know or remember I was asked to travel cross-country to speak at Canada’s first ever Pain Summit in Ottawa this past April. The experience was absolutely terrifying and I spent a lot of the time leading up to it cursing myself for getting myself into that situation. But I did it because it was important and I felt an obligation to myself and to everyone and anyone in a similar situation to open eyes to the reality of chronic pain. The audience of politicians, medical professionals, business stakeholders and policy makers needed to hear the account of a young person living in 24/7, often excruciating pain, and that’s what I was there for. My speech was intended to steer away from medical terms and hard facts and instead show you the individual behind the curtain and the devastating impact the condition of chronic pain has on the lives of those involved. I spoke candidly about the humiliating doctor appointments, the ignorant opinions of the many who believe that a young person cannot suffer from chronic pain and – I think most importantly – those moments that my heart broke to realize that I was never getting better and that pain would be my constant companion for the rest of my young life. I was open, honest and unavoidably vulnerable and I think that it made an impact on my listeners.

Chronic pain is often referred to as the “invisible illness” by those who suffer with it. The impression that someone gets by looking at you and not seeing any physical disability or injury is too often the only one that seems to really stick. I don’t look sick or injured and so everyone assumes that I am a healthy person who’s not in any pain whatsoever and who certainly is not suffering to the extent that those who know me well see that I am. Many of us also do our best to contain our discomfort, either because of previous negative experiences, being uncomfortable with the vulnerability that showing pain invokes or whatever the reason may be. One of the reasons that I try to hide my pain is because I fear others will think that I’m being melodramatic or just trying to get attention. Those fears have shaped my extreme dislike of revealing my pain to really anyone apart from my mother. And with her a big part of it is because I know that she understands exactly what it feels like and would be the last to judge me. 

The aim of the Canadian Pain Summit was to help invoke a national pain strategy – similar to one that was recently put into action in Australia – in Canada. What that means is this: “The National Pain Strategy is a call to action developed by clinicians, researchers, stakeholder groups and people living with pain to address the social, economic and personal impact of pain on Canadians. To date, over 4,000 Canadians and more than 100 organizations have shown their support for a National Pain Strategy. The Strategy identifies four key target areas for change, including: awareness and education, access, research and ongoing monitoring. The Strategy has been reviewed and contributed by various stakeholders such as Health Canada, The Canadian Medical Association, The Royal College of Physicians and Surgeons of Canada, the Canadian Nurses Association, the Canadian Pharmacists Association, the Arthritis Alliance and The Canadian Association of Retired Persons to address the gaps that exist in pain management and to minimize its burden on Canadians living with pain, their families and society.” – http://www.newswire.ca/en/story/960605/canadians-deserve-a-national-pain-strategy

Needless to say; were the pain strategy put into place it would make a huge positive impact on all of us who are currently living in chronic pain and those who will be in the future. It’s an important objective, one that I sincerely hope succeeds, not only for my sake but for the sake of many of my loved ones and the 1 in 5 Canadians suffering with chronic pain. To do your part and make a difference click the picture below to endorse the pain strategy. It’s as easy as filling out 5 fields of information (name, email etc). Also, if you’d like to make a donation towards the national pain strategy for Canada click the “make a donation” picture/link below (donations handled by the Canadian Pain Foundation).

We have a long way to go yet, in regards to raising awareness about chronic pain. But I do believe that we’re on the right path and that we’re making progress. I will spend my life speaking out about it in any way that circumstance allows me to and hoping that in some small way I’m making a difference. Luckily, I’m joined by handfuls of amazing, brave bloggers who are writing out their lives and experiences with chronic pain for the world to see. Having access to their stories will make an impact on those who take the time to read them. Hopefully, in the end, it will change their views on just who the people being affected by this condition truly are.

A few of the pictures from my Ottawa trip.

I can’t believe it’s already been two months since the Canadian pain summit! I said I’d post the photos I took soon but I just kept postponing hooking my camera up and getting them onto the computer. But, here’s a few that I like, I’m still going through the rest, but they will be up.

This is the awesome view of Gatineau Quebec along the walk around the parliament buildings.

These are the provincial flags lined up on the stage next to where I gave my speech on living with pain as a teenager.

This is just a glimpse of one of the beautiful (and huge!) parliament buildings. I love the old architecture! It’s like taking a trip to Europe without leaving the country!

The Canadian Pain Summit: Part II

This is part II of my Canadian pain summit experience. Click here for part I.

First thing’s first though, if you haven’t done so already, click this link to endorse a national pain strategy in Canada. Do it, do it, do it. You’re going to be hearing that a lot from me for the next while, and that’s because my future and the futures of many people I love are directly tied to the success of the pain strategy. So, dare I say it again, do it.

After I finished my speech at the summit I was immediately asked to do an on camera interview, and on the way was stopped every few steps by summit attendees, professionals, saying thank you, telling me I’d done well, giving me their business cards and asking me to contact them. I was asked by Warriors of Pain to possibly be a spokesperson for their foundation and was given an autographed book by another writer – a woman also suffering from chronic pain. I felt like a celebrity for a few moments! I was told by two separate delegates that my words were what decided their support for the pain strategy for them. If it sounds like I’m gloating, it’s because I am!

I was also honored to be able to meet Dr. Allen Finley a pediatric anesthesiologist who has worked for 20 years in pain research and management. Now here is the kind of doctor that Canada needs to have in every city, someone who knows and cares about his patient’s pain. He had also done a presentation about the prevalence of pain in pediatrics, after which he came up and asked me what I thought about the speech because I am the type of person he was speaking for and that my opinion was the most important one to him. His presentation really hit home for me, he even said at one point “the teenager in pain, who no one believes”, and I had been there. I had been told that it was in my head by my pediatrician, that I was making it up, trying to get out of school. He’s seen the same thing too many times. He’s an amazing health professional, if I had known him 5 years ago my story may have been quite different. His speech deeply affected my mom too. Especially during the points where he discussed the deep pain a parent experiences when their child is suffering and there’s nothing they can do to fix it. For me though, just having the relationship that I do with my mom and having her there for me the way she is, is more than I could hope for. And whether it cures the pain or not, it makes a huge difference in my life to have that constant support.

I met too many amazingly kind, supportive people to list here. People that will always hold a place in my heart, people who’ve walked the same long road of chronic pain that I have, people who work tirelessly to improve our lives. Not one person I encountered during the summit showed me anything less than pure kindness and compassion. Something, as someone living in the stigma of chronic pain, I don’t normally experience.

There was a running theme presented at the summit, one echoed by many of the presentations we saw: “Access to pain management without discrimination is a fundamental human right“. One doctor who spoke (who I also very much liked) suggested that failing to provide, or denying a patient in pain, proper pain management was equivalent to criminal negligence, and technically should be able to be tried in court. Now, that doesn’t mean we should start bringing our doctors to court whenever we have a bad experience with them, but it does provide vision of how wrong, how inhumane it is to deny someone who’s suffering a means of relief, when possible.

After the summit concluded me and mom gathered up enough energy to walk around the outside of the parliament buildings (just a block from our hotel). I had no idea how huge the buildings were, neither did I know how completely breathtaking they are. I wanted to just sit and stare at them for hours. The detail and the work that must have been put into them, not to mention the history behind them. I took pictures (which I’ll put up soon) but they’re nothing in comparison to the real thing.

As for later that night, I can’t even explain how much I was dreading the trip home. The amount of pain I was in during the trip to Ottawa was unbearable, but this time we had been going non stop for days beforehand, not to mention an extra 4 hours being added in layover time. But, thankfully my pain medications actually did their job better than usual, for once. The trip wasn’t even a fraction as hard as I thought it would be, and I was so excited to get back to the comforts of home. But I was also sad that I couldn’t bring all of the wonderful people I met back with me. I should also mention, I don’t like flying in planes nearly as much as I thought. The trip to Ottawa I spent a good deal of time thinking this was it, we were going to crash. The trip back I felt calmer, I think if I flew more often I’d get used to it. It just feels weird, that humans have the power to get in this huge machine and fly 35,000 feet above the ground. But I will say this, the views are incredible.

All in all the summit was incredible. I learned a lot, not only from other people but from myself as well. I learned that I can do things I never thought I could, and that there is great reward in pushing yourself beyond your boundaries. The summit gave me something I often never have, hope. Hope that maybe one day people across Canada in pain, myself and those I love included, will no longer feel stigmatized by it. Because, like one doctor at the summit said: “what a cruel thing to do to someone who’s already in pain”. I have hope that one day I may be able to lead a semi normal live, and receive the proper pain management. And lastly, hope that no other young person, no other person period, has to go through what I did, while trying to get help.

I’m extremely thankful to have been able to experience the things that I did during the summit. To be reminded that there are people out there who understand and who care. And that they’re working hard to improve our lives.

The Canadian Pain Summit: Part I

I know that I said I’d write about my experience at the pain summit in Ottawa yesterday but I lied. I ended up having a rough day and going to bed super early, so, here I am, and I’ll write about it now.

I’m splitting this post into two parts because I have a lot to say that’s important and I know that sometimes when a post is too long interest wanes. Click here for part II

First thing’s first though, if you haven’t done so already, click this link to endorse a national pain strategy in Canada. Do it, do it, do it. You’re going to be hearing that a lot from me for the next while, and that’s because my future and the futures of many people I love are directly tied to the success of the pain strategy. So, dare I say it again, do it.

For those of you who don’t know, the goal of the pain summit was to help invoke a national pain strategy in Canada. To learn more about what that is, and what it would achieve click this link. Having a national pain strategy in Canada is a huge deal. As someone living in pain everyday I can honestly say that I didn’t even know how big of a deal it truly was and how many people it would positively impact until I came out of the summit. It would mean far better access to proper pain management for all Canadians – babies, children, war veterans, the elderly, fathers, mothers, on and on – suffering with chronic pain (1 in 5, equaling approx 6 million). 

The travel to Ottawa was long and nearly unbearable. There was absolutely no room for any movement on the plane (especially for someone as tall as me), and I had to sit in pretty much one position from 6:00 am to 6:00 pm. By the time we arrived in Ottawa my right hand was covered in self inflicted blisters – anything to distract myself from the horrible pain in my body and I was seriously wondering what I had gotten myself into. The way you think things will be, and the way they actually feel when you’re in pain, are entirely different. I had delusional visions of sitting through the entire pain summit, – the day after the long travel to Ottawa – and then walking 20 minutes to a museum, spending a couple of hours there, and walking 20 minutes back to our hotel. It’s safe to say that a couple of hours into the trip I began to realize how ridiculous that notion had been. Things are never as wonderful as you think they’ll be when you’re in pain – that’s just the way it is. I was missing home straight away and wishing I had never left in the first place, I was also having anxiety attacks about doing my speech in the morning (don’t worry this gets WAY better and I’m not being sarcastic). You just wish for the comforts of home and your own bed and not having any commitments – another luxury of living in pain (by the way I will be saying the P word a lot before I’m done this post).

Anyways, we (me and mom) briefly attended the welcome reception and got to meet some of the fantastic members of the Canadian Pain Coalition and Canadian Pain Society that I had been corresponding with via email the past few months, as well as some other wonderful people – some also living with chronic pain. Everyone was very understanding about us leaving so quickly to go back to our room, they knew what a long day we’d had and that we needed a break.

The morning of the summit I was a nervous wreck. When I walked into the ballroom and seen all of the people – delegates, doctors, scientists – that would be watching me and listening to my speech, I was literally ready to burst into tears, and quite angry at myself for getting myself into that situation. There were a few things keeping me from running away and quitting; first, I knew how important it was for me to tell my story, especially the bad parts of it, because people need to know what millions of Canadians are facing. Second, I wanted to force myself out of the box that I crawled into when the pain started. I’ve spent so much time there because it’s easier, that I’ve started to forget that there’s a big wide world out there, whether I’m in pain or not.

The presentations and speeches that I heard during the summit were phenomenal. They were also hard to listen to, only because of the fact that it’s like hearing your same sad story echoed by so many other people. The sheer similarities in story after story compared to my own were unbelievable. It was bittersweet – knowing that I’m far less alone than I often feel, while at the same time knowing that there’s so many others out there fighting the same hard battle. As for my own speech, the reaction I got was unbelievable, even at this moment I can’t quite wrap my mind around it. Because I was so nervous I sort of went on autopilot during my speech, when it was over I couldn’t even recall saying a huge chunk of it. But the first thing that I really registered was the fact that everyone in the room was standing – I received the first and only standing ovation of the entire summit. I was amazed, and so surprised and in the end so proud of myself, not only for the step I took for myself and other people suffering with chronic pain but for the fact that I proved to myself that I could do it, and that I could step so far out of my comfort zone.

I’ll post the rest of the summit’s events tomorrow. The best is yet to come! & pictures of the beautiful parliament buildings and our unbelievable hotel will be up as soon as I’ve had a chance to go through them.

Return From Ottawa: Important Request

Hi guys! I’m back from my trip to the Canadian Pain Summit in Ottawa. I’m exhausted but I will update tomorrow and let you know how it all went.

Right now what I’m asking is this: please, please, please click this link to endorse a national pain strategy in Canada. I can’t even begin to tell you how important this is. Do it for the four year old, dying of cancer who’s in too much pain to even let her mother comfort her during her last days, do it for the soldiers who fought for our country only to be injured and live needlessly and continuously in pain afterwards, do it for the infants, born prematurely and stuck with needles over 20 times within their first day of life, do it for the teenager who thinks the only way to end the suffering is to end his life. Do it for the 1 in 5 Canadians suffering with some form of chronic pain.

We need to get the word out there, we need to step up and make the difference in our country, for our people and hopefully, others will follow. This is so important.

Off on an Adventure

Not that I’ve been posting much lately (sorry, nothing remotely interesting has been going on in my realm of the world), but just wanted to say that we’re (me & mom) off to Ottawa. Well, technically we’re off to PG for the night before catching our insanely early flight to the big O. It’s supposed to be rainy, miserable picture taking weather but I’m seriously hoping I can get a decent shot of something. I’m really excited for the pain summit and to come back here and let you know some of the things that I’ve seen and learnt there.

I’m also super nervous about my speech. But these things are never as scary as you think they’re going to be…right? I’ll post it on here when we get back. So far everyone’s been really supportive. And, I’m speaking as a youth living in pain, so it’s not like they’re expecting an Obama-worthy speech. But it’s not the words I’m worried about, I feel really confident about what I’ve written. It’s the delivery that really freaks me out. I can’t tell you how many times I’ve been told to picture the audience naked in the past few days. A terrible suggestion, I might add. Instead I’m going to do one better and not wear my glasses. Then I won’t be able to see the audience, perfect.  

In typical me fashion, I haven’t slept yet today. But oh well, I suppose there will be time for that when we get to the hotel this afternoon, maybe even during the car ride, if I’m lucky. Our schedule is super packed during the short three day trip. I’m worried about how my body’s going to take it; sitting in the car, sitting on the plane, layovers, presentations. Yikes. I hope the pain doesn’t dampen the experience. 

I get so easily overwhelmed now, half of me wants it to be over already. But I know this is a once in a lifetime, amazing trip/opportunity and that it’ll be worth every minute of it. Plus, I get to speak out about something that’s had a huge impact on my life, and hopefully be a part of making the lives of other people in pain a little better.

So, deep breaths and wish me luck!