Dear 13 year old me

I was looking through one of my old journals the other day and stumbled upon this letter that I wrote when I was 16, addressed to my 13 year old self.

Dear 13 year old me:

I know that you’re scared right now. I know that you’re going through a lot and that you don’t know what’s happening or why you’re in so much pain. You will know one day, I promise. It’s going to take some time but it will happen.

I know that the people you love are confused too. Some of them may not understand what you’re going through very much. I know that this might make you question how much they love you, and it might make you want to push them away to keep from getting hurt. Try not to. Try talking to them and telling them what you’re feeling and that what they say can hurt just as much as the physical pain sometimes. They’re going to make mistakes and say the wrong things, but try to remember that this is all new to them too and that they really do love you.

Your pain is real. Never start to doubt that just because some ignorant, uninterested doctor couldn’t be bothered to give you a better explanation. They’re wrong, and one day you’ll be able to prove it. You’re not crazy, no matter how much you’re beginning to feel like you are. The way they’re treating you is wrong and I’m so sorry that they aren’t trying to help you. 

I know that you’re tired, physically and emotionally. I know that you feel like giving up, and that sometimes you think that you’d be better off dead, but things are going to get better. They might have to get worse first, if you can even imagine that, but there will be improvements in the future. There’ll be more downfalls too but you’ll get through it all, you just have to be strong. 

Don’t give up on your education. I know that you’re bitter because this isn’t the way that you wanted to start your high school experience, but, giving up on your school work will not make you feel better and you’ll only regret it down the line. I know that it’s harder at home, but you’re smart and I know that you can do it.

I’m sorry, but you’re not going to play basketball or volleyball anymore. I promise you though that one day it won’t hurt so much to let those things go. With time it will cross your mind less and less. You need to let go of some of your hopes and dreams. It’s not fair, I know, but there will be new dreams and goals, you just need to keep an open mind.

Most of your friends are going to start dropping out of your life. Some are already starting to, and sadly more will eventually follow. I know you feel like it’s because there’s something wrong with you, or that you’re not good enough anymore but I promise you that it’s not personal. They don’t understand why you aren’t going out with them anymore or why you seem so boring and down when you do. Some of them probably wonder if you’re faking it or trying to get attention. They don’t know how hard it is for you to keep up now and do the things that you used to. They’re young and they want to live their lives that way. It might be hard to face, but there are just some things that your body isn’t going to be able to handle anymore.

Never forget to thank mom for being there for you. I know that right now she’s the only one who truly believes you and is fighting for you. She’ll never stop, ever. The two of you are going to have to help each other through a lot of pain and hard times. You’re going to have to be there for each other through everything. I don’t have to tell you how lucky you are to have her, I know that you already know. 

Finally, try to appreciate the things that you still have. Try to hold on to those things instead of the pain you’re feeling because one day they will be the last memories you have of a life without constant pain. Remember the sense of purpose you had in life before this new pain started and hold onto that. I still have faith that one day we’re going to need it.

I found the letter hard to read sometimes. It brought up a lot of old feelings and made me wish that I could hug that 13 year old girl and tell her to keep her chin up. I wish that I had some of the knowledge and connections back then that I do now. It would’ve made life a whole lot easier.

Smiley faces.

A world full of pain is a lonely place. That is simply the truth. That being said, I’m again reminded of the hearts that go with me on my journey, even to the loneliest of places. There is love and compassion to give me strength when I feel done fighting to live a life that I find no pleasure in anymore. They remind me that; though I’m alone in my pain, I am not alone in life. <3 

Thanks SN, LG, and yours’ for the flowers. They meant more than I can say. The smiley face mug was perfect! xox

The doctor appointment.

I first have to say: forgive me for any spelling or grammar errors that may be in this post. I haven’t been to sleep yet and am desperately and overwhelmingly tired.

I have mixed feelings about my doctor appointment today. By the time I was called in it was clear that my doctor was running behind and there were already people waiting for their appointments despite the fact that I had 4 appointments booked back to back. At first she suggested I be sent to a pain clinic until I informed her that I had already graduated from a pain clinic program at the Children’s Hospital a few years prior. I told her that I remember all of the suggestions and tools that they gave me and doubted that another of the same experience would be very beneficial (not to mention that the travel is very difficult financially). That was fine and she seemed in agreement.

I handed her the things that I had written out earlier and explained how my concentration difficulties, pain and lack of sleep made writing my thoughts and experiences out the easiest way to explain my situation thoroughly. She skimmed through them – more along the lines of glanced – fast enough that I knew she hadn’t taken in hardly anything that I had written. This was a bit frustrating and insulting. She didn’t even bother to keep the paper to read later, instead she handed them back to me.

My biggest problem with the appointment is this: my doctor seems very intent on pushing Dilaudid on me, as a means of regular pain control (instead of sporadic use). She’s continually done this despite my reasons for not wanting to replace my tylenol 3s with the Dilaudid (Tylenol 3s have been my more regular pain management opioid for many years). My view is this: I’ve been controlling my pain with the T3s for six years now, and have generally been on the same dose without any significant tolerance increase. However, with the Dilaudid my tolerance grows staggeringly fast and compared to the 6 years with the T3s and no tolerance increase, I seem to have to up my dose of Dilaudid at least twice a week (which is just not okay: to go from taking 2mg once a day to having 6mg twice a day hardly work within a few weeks). Now mind you, this happened when my ribs were subluxated and I needed to be constantly medicated because of the intensity of that pain. 

I’ve had a hard time coping with the needed amount of medication since having taken the Dilaudid regularly.  Especially when I’ve been so strict with my medication intake all these years and spent so many days desperately needing more pain relief while not allowing myself to have it. I know that may be confusing to some people – why I wouldn’t just take the medication when I need it – but if you think of the fact that I’m only 19 and will be in pain for the rest of my life, it’s just not a practical solution. My needed dose would increase to an insane amount if I regularly took medication for the rest of my life, and eventually the pain killers lose their intended effect on pain, often causing more of it in the end.

On top of this, Dilaudid also gives me fairly severe nausea to the point where I need to take gravol with it everytime or I just end up throwing up, and even with the gravol my stomach feels dreadful. My Tylenol 3s don’t do that at all. Both this appointment and the last I’ve explained this to her but it seems to go right past her head. She doesn’t acknowledge what I’ve said at all and has both times ended the appointment while still advocating for more Dilaudid use instead. Last time I thought it was just because I was a fit in appointment and she was an hour behind, but the same thing happened this time.

She ended up suggesting that I try what is known as a “drug holiday”. This is when you cease all use of your medication (she said 5 to 6 days should do the trick – I’ve read that 10 or so is around the target number of days), this is fairly effective in lowering your body’s tolerance buildup. Coincidentally I’m actually already on day 7 of the process. After my ribs had gone back into place I did my research on the subject in order to find a way to get back to my previous dosages. The 7 days have been very trying and painful – I’ve come close to giving up several times everyday since the beginning. But, here I am still managing it. It’s cost me my sleep – I can’t be in my bed for much more than 6 hours before it’s too painful to lay there anymore and I wake up every hour or so in significant pain. I’m going to have to buy a mattress in the next few days or so (mine is in horrendous shape). I think that a hospital bed would be highly beneficial (stacking pillows up and sleeping on an angle sometimes helps) but my room is too small to fit one. I’ve been on a steady dose of muscle relaxer in combination with ibuprofen (over the counter) in order to ease the pain whatever small amount possible. It’s got me worried about my stomach but I don’t know what else to do to help me get through the “drug holiday”.

Anyways, all in all the appointment didn’t go too well. It was alright but it had it’s downfalls, though, we did cover a bit of ground. Despite the length of time booked for my appointment I still had the feeling that she was trying to rush through everything. I’m not a fan of going to the doctors and right now I feel pretty “doctored out”.

The things that shape us.

I have a long doctor appointment today to be entirely focused on my pain and the management of it. I have some specific things that I need/want to talk to her about, but I’m afraid. I’ve always been frightened of and extremely uncomfortable with telling doctors the truth and being honest and vulnerable with how much pain I’m in and how it’s affecting my day to day life. I feel like a fraud and I’ve never understood the nagging voice that I have when it comes to my chronic pain, the one saying you’re a liar, you’re a fake. Is it denial? I don’t think so because I know that I’m in pain and I know that there are a thousand proven reasons for it. But I somehow feel like I need to be convincing, like I need to decide how I’m going to act beforehand so that my gp will believe me, when the reality is that I should only need to be truthful.

I think am fairly certain that the reason for this is the treatment that I received early on in my dealings with chronic pain. I was seen as someone who was either faking it or whose pain was entirely psychosomatic. I went to my multitude of pointless doctor referrals with my jaw clenched, knowing that I was about to walk into a room full of accusations and judgement, when what I desperately needed was understanding, acknowledgement and answers. For that period of time I was suffering and scared but I felt that – despite the obvious – I needed to prove that to everyone.

I feel like those experiences cemented my deep seated fear of not being believed and being judged. They may not sound traumatic now, but at the time they were devastating. Here I was, someone who not even a year ago was leading a perfectly normal life, but who was now in daily, excruciating, frightening pain that took away my friends, my school life, my sports and my normalcy. The people that should’ve been helping me, who should’ve been my advocates were the ones that tore me down and made me question what I knew in my heart was the truth. I learned then that when you’re told something often enough, that no matter what you know, you sometimes begin to believe it to be true.

I know that if I’m to be helped that I need to be honest and assertive. And for the most part I think that I’m slowly getting better. Sometimes it just depends on the day and my drive to fight in order to get the best treatment that I can at the time. I fought at my last appointment because the amount of pain that I was in left me no choice, I knew that I couldn’t walk out of that room and go back to things the way that they were.

I’m more prepared for this appointment. I’ve written down every bit of the daily pain that I experience, the lack of sleep, the difficulty in concentration and the low mood because of it all. Aside from the fact that I think it’s helpful for all of us to make lists to refer to while at the doctor, writing has also always been by far the most comfortable form of communication for me. I can say things in my writing that I could never say out loud and it gives me a voice that I never would’ve found otherwise. 

“Our real blessings often appear to us in the shape of pains, losses and disappointments; but let us have patience and we soon shall see them in their proper figures.” – Joseph Addison

A break – finally.

My body finally dealt me a break yesterday; I woke up and my ribs had gone back into place! I was so relieved and lifted. I was beginning to fear that they were never going to go back in and was wondering how I would live like that for the rest of my life. When I’m scared my mind tends to skip ahead to the hypothetical, something that I’m working on.

My pain level is still quite high compared to usual but I imagine that it takes a little while for your body to recover from something like that. I’m exhausted but except for last night, I haven’t been sleeping much. I have that unsettling haze of gloom hanging over me, the kind that you have when you wake up the morning after something really bad has happened. But, at least now I can see a light at the end of the tunnel. A small light, but a light nonetheless.

A quick update on pain and my doctor appointment.

It’s been a little while since my last post and I thought that I should update. Thank you all so much for the kind words and support. I know that I haven’t responded to any of the comments and/or emails but know that I have read them all multiple times and they mean so much to me. The love and compassion gives me strength when I need it the most.

I got in to see the doctor the same day that I last wrote. The appointment was brief because she was fitting me in but it was enough time for her to get the gist of just how badly I’m doing pain-wise and how painful the rib subluxation is. Actually, I think she was a bit startled by the state that I was in. I hadn’t slept yet so I was in zombie mode, I couldn’t put my shoes on without my mom’s help and I was on the verge of tears whenever I tried to explain how hard things have been lately. She seemed to grasp my situation and desperation fairly quickly. She ended up giving me a prescription for Hydromorph Contin which is just time release Dilaudid (the pain killer that I used to take every once in a while when my pain level was especially high), to take twice a day. I’m on a much higher dose of that then I want to be and it’s been stressing me out but even with that I’m still having a really hard time with the pain. If I hadn’t been side tracked I would’ve insisted on a different medication because I can’t take this one without taking gravol first. If I don’t then the nausea gets bad enough that I just end up throwing the medication back up. It seems wrong to put so many pills in my body everyday and the gravol in combination with my beta blocker and pain medication make me unbearably tired. That would be fine – beneficial even – except that it hurts my back to lay down for very long at a time.

I’ve been in a bit of a better mood than before. I enjoyed my Thanksgiving even though it was a little overwhelming and I was too sick to eat much. I got to meet my cousin’s 5 week old baby girl for the first time (I love babies) and see some family that I haven’t seen for a long time. I was thinking about what I was thankful for on Thanksgiving day and the first thing that came to my mind was my mom, of course. She’s been so amazing and supportive the past couple of weeks. She’s the only thing that’s kept me holding on and I know that I’m unbelievably lucky to have her. I’m also very thankful to have the opportunity to write out everything that I feel – good and bad – here on my blog and for all of you and your kind words.

Anyways, I’m still trucking along as best as I can. I haven’t slept yet so I hope to write a little more later today once I have.

Treading water.

Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and four days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell trying to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I want need the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thoughts and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

In the end, pain is a lonely thing. 

Clenching my fists.

Yesterday was a good day. I slept decently, vacuumed, went to the store and went visiting, all of which I did happily and in a minimal degree of pain. I sang, I danced around and I smiled. I think that the last time I had a day like that I was in my early teens.

Today however, is the polar opposite. I am nearing my threshold for pain tolerance, edging closer and closer to the breaking point. I think that I have multiple subluxated ribs and can’t take a deep breath in or bend over. The pain that it’s causing is nearly jaw breaking and I’m finding no relief in anything that I try to ease it with. My spine is radiating searing pain down to the tips of my toes and my head is throbbing so badly that I can actually see my pulse in my eyes and hear my teeth knock together in tune with it. I don’t think that this is payment for yesterday – save for my back which is very likely worse because of the vacuuming. If it were though, I’d take it – as hard as that is to swallow in all of my current misery. I mean, when was the last time that I could pinpoint a specific date and say that was a good day. This rough day however, will eventually pass and fade into a background littered with similar days. Only this time I will have the memory of yesterday to tide me over.

I desperately need support right now but I’m extremely snappy and irritable so instead I’ve been isolating myself to keep from hurting anyone that I care about with my anger. It’s nobody’s fault and I know that. It’s just one of those day where you feel like a fizzy drink that’s been shaken up – you need to blow the lid off and let some of the pressure out. You think that taking out all of your pain on someone might make you feel better – but I know that it never does. For now I’m holed up in my room, gritting my teeth and clenching my fists, just waiting for some kind of relief to find me.

“And when at last you find someone to whom you feel you can pour out your soul, you stop in shock at the words you utter — they are so rusty, so ugly, so meaningless and feeble from being kept in the small cramped dark inside you so long.” ― Sylvia Plath

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.

Thank-Yous & Goodbyes.

First off I have been reading all of your wonderful comments and though I haven’t gotten around to writing back I just want to say thank you and I really, really do appreciate the kindness and support. I try to respond individually to every comment but sometimes it takes me a little while to get to them. I’m also a bit of a perfectionist; I try ridiculously hard to say the exact right thing when I do respond. I feel like I owe everyone at least that much in comparison to what you’ve all given me.

I’m super tired right now, I haven’t slept in the last 24 hours, though, I did sleep the entire day the day before that. I got my fist dose of how much the beta blockers really are going to slow me down in regards to exercise. If they keep it up I think that I’ll be trying a different one or switching to the calcium channel blockers. I rode my bike to the nearby grocery store – something that I can normally do in my sleep – because my parents were out of town with the car, I had to get off 3/4s of the way there and walk it! That’s how exhausted I was and it was so embarrassing. I was so exerted that I nearly threw up multiple times and my entire body was shaking so that I couldn’t properly deal with my money in any sort of timely fashion. Of course I also got the “would you like to donate so and so much $ to the children’s hospital” which I always try to say yes to but then I had to sign my name, which took me way longer than it should.

I had considered calling a taxi or a family member to take me home but my pride got in the way of that. I ended up walking my bike the entire way home aside from the downhill areas. I’m still surprised about just how extreme the change in my resistance was. When I checked my pulse it was only at 117 – which might not be good, those of us with MFS are not supposed to get our hr past 100 when on beta blockers, but I hadn’t planned to – the point being that before I had gone on them I would get my heart rate up to 180 before I felt that exhausted (with the questionable approval of my cardiologist). I also forgot my asthma inhaler which was insanely stupid. Beta blockers can make asthma worse, but so far mine seems to be mild enough to take it. I just hadn’t expected to be exerting myself hardly at all and so I hadn’t properly thought ahead.

I’m having a hard time seeing today. This happens occasionally and it’s hard to explain. My eyes just don’t seem to focus as well and everything seems a bit blurry. It’s especially noticeable when drawing or typing. I often wonder if it’s connected to my headaches at all. I’ve been trying to pay attention and see if it precedes a migraine. I’m going a tad stir crazy. I love having the freedom to drive myself around but it seems like there’s always something keeping me from being able to whether it be a headache, too much pain in general, no sleep or having taken my pain pills – I won’t drive in any of those circumstances because I don’t think that I can do it as safely. Now the days are getting shorter and I still don’t drive at night because of my eyes. I generally don’t mind being at home but I’m starting to get anxious to get out of the house.

My mood’s been low. My best friend since grade 8 moved away to go to college and the day after my parents left to go visit my brother so I was alone in the house with my thoughts. Watching the world spin without me is a bit depressing. I had also wanted to go visit my brother but felt too badly pain-wise to do so. As for my best friend leaving, I’ve been trying not to think about it but I’m going to miss her. I’ve never dealt with change well and she’s one of the only people in the world that didn’t desert me when the pain started and I had to leave school. I’m really, sincerely proud of her but if I’m being truly honest; I’m also jealous. And not the kind of I’m miserable so I want you to be too jealousy. Just the I wish that my life was more like your’s kind. Health really is wealth.