How to be a Friend to Someone in Chronic Pain

Good Evening!

Branching out from my regular style of upbeat musings on my life, I would like to take this time to provide some helpful hints to readers who are unsure how to be a friend to someone who lives with chronic pain.

I’d like to start by saying that my friends are amazing, and while the majority of them do not have chronic pain themselves they are all wonderfully supportive of my needs.
That being said, I know many people who struggle with making friends who fully grasp the gravity of their illnesses so I am hoping this can be a guide to promote understanding and happiness.

How to be a Friend to Someone in Chronic Pain

  1. We want understanding, not pity.
    When we complain about our illnesses or pain we are not looking for pity. The truth is, we are in pain all the time and the fact that we are not mentioning it all day, every day, means that when we do bring it up it’s worse than normal. We may be bringing it to your attention because we feel bad that we are not able to follow through on plans or so you are aware in case we are out of touch for a little while. We are looking for your understanding and support, not pity.
  2. We may not be able to make plans in advance and that has to be okay.
    Our health is so unpredictable. We never know how we are going to feel from day to day, let alone week to week. We can, quite literally, “pencil you in” for dinner sometime next week with the understanding that if our health is not cooperating we may have to reschedule. We call this a “pain check” instead of a “rain check”. We understand how terribly inconvenient this is and appreciate your understanding more than we could say.
  3. We may not be as available as we would like to be.
    Sometimes we are unable to talk on the phone or text as much as we would love to for a number of reasons. One reason is that talking on the phone can be overwhelming or even painful for some chronic pain fighters. Texting non stop can cause our chronic fatigue to flare and hurt our hands and joints. We would love to chat, however short the conversation may be! We appreciate you checking in on us!
  4.  We’re the same people we always have been, but we’re different, too.
    This may sound contradictory and confusing, and it is for us also. Pain changes people. We’re not the same people we were when we started this journey and our priorities may have shifted a bit, but we’re still the friends you fell in love with. We can rock a Netflix marathon or gossiping session like nobody’s business and chronic pain warriors have the best blankets, pillows, and snacks you’ve ever seen.
  5.  Our bodies may not let us do some of the activities you’re interested in.
    We don’t want to be left out, but we can’t partake in extreme activities anymore. These activities may include concerts, sky diving, marathon running, or day trips to Cedar Point. This breaks our hearts. It kills us to say no, but we’re not being a “downer” or a “kill joy,” we’re just not healthy anymore. Please have fun and we will live vicariously through you! Let us know when you want to chill and colour. We’re down for that.
  6. If you have any questions about our illnesses, ask us!
    It’s not a secret you need to tiptoe around. We’d love for you to ask questions! The more questions you ask, the more we explain, the more you understand and the happier we will all be! We know you may feel awkward asking about the ins and outs of our illnesses, but we are totally ready and willing to answer whatever you want to know.
  7. You may see us arrange pillows and pop medications like it’s our day job. It is.
    Taking care of ourselves is our job. We definitely have a method to our madness, and trust us, all of these things keep us alive and functioning. Yes, we may have more medications than a pharmacy and more pillows than Bed, Bath & Beyond, but each medication and pillow serves a purpose. Bonus points are awarded to friends and family who give us pillows or help us arrange them. It can be exhausting work!
  8. Any offer of help is appreciated.
    We adore helpful friends! Even if it is something small like hanging out with us for an hour, bringing us coffee, or grabbing something on a low shelf, we appreciate it! Larger offers like helping with dinner, helping with household tasks, or errand running is above and beyond! We are so thankful for your support and can’t imagine life without you!
  9. You are the best friends in the world.
    And we love you!

Thank you!

 

Your friendly neighbourhood Spoonie,

Courtney

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Beginning and Letting Go

Good Afternoon!

As usual on Mondays (or Tuesdays, or whenever I get inspired!) please check out the Song of the Week page for a new addition to your feel good soundtrack!

Today, as I was emptying the dishwasher (because we have one now! Way too excited about that) and heading back to bed, I felt the horribleness of self-pity. I was trying to remember my last true “good day” and wondered when things would turn around for the better. I tried to remember every time I had that thought before. How many times do we plan for our next good day rather than make the best of what we have?

Here is where I begin. Here is where I change my way of thinking. Here is where I let go of the self pity, anger, frustration, and negativity. Here is where I alter my perception of my life and future.

This is not to say that I will never experience those feelings again. I’m only human after all. What I am working on is acknowledging those feelings and moving past them. Refusing to wallow in despair about my situation may be hard, damn near impossible some days, but I am a work in progress. Aren’t we all?

So this is my challenge. Today and every day. Make the most of the days I have, because some people aren’t so lucky. Smile every chance I get, not just for myself but for others. Love the family and friends I have, because they are the good in my life. And do what I can with what I have.

Even if I feel absolutely terrible, I want to feel the sun on my face every day. I want to experience my life as fully as I am able.

Our lives may not be what we had imagined, but they are the lives we were given. And we should fight to live them!

To new beginnings!

Love you all so much,

Courtney

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Smiling through the hospital visit. Yay for antibiotics and horrible UTI's.
Smiling through the hospital visit. Yay for antibiotics and horrible UTI’s.

 

The Importance of Community

Good Morning!

As always, check out the Song of the Week for a great tune!

This past week I have been fortunate enough to be surrounded by friends and family. People that love me, care for me, and take care of me. Friends that let me (or tell me) to sit when I need to, rest if I’m tired, and eat with my medications.
Having these people in my life reminds me that nobody fights alone. We aren’t meant to. It’s biology. It’s evolution. It’s in our DNA. We need each other! “We are all just walking each other home– Ram Dass.”

Community can mean a couple of different things. It can mean a group of people who live in the same vicinity or people who share a common characteristic or trait. I am so lucky to have amazing communities in accordance with both definitions!
The people who live around me, that I’m in constant contact with, are incredibly supportive of my needs. They may not completely understand the challenges I live with, but are always ready to grab my walker/cane, pick up things I can’t, arrange my pillows in a comfortable way, and offer their hand to assist my balance. All of these seemingly little gestures are more helpful and moving than anyone could ever know.
My spoonie community, the people who share a common characteristic of chronic illnesses, is without a doubt the greatest blessing I never saw coming. I hadn’t heard the word spoonie until I began my Tumblr blog and now I don’t know how I ever made it so far without this tribe. I have learned so much about my illnesses and myself through the spooniverse and I could not be more grateful. Sharing tricks of the trade and support from those who understand has been immeasurably instrumental in where I am today.

Sometimes these communities overlap, like when I have friends and family members who are also battling chronic illnesses. Like my friend who was over this week who has suspected arthritis! Or my parents and grandparents who suffer with arthritis, ankylosing spondylitis, degenerative disc disease, and others.
Look around you right now (assuming you’re not alone), and you will find people who are fighting battles you don’t know about. Talk to them, get to know them, they are your community. Your tribe. And even if you don’t live with them, you might have common characteristics or traits to bond over. Nobody can walk this road alone. It’s much more fun to have someone to chat with along the way.

Who is in your community?

I’ll be in yours if you’ll be in mine! 🙂

chronicallycourtney@gmail.com

Love,

Courtney

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The Bright-ish Side

Good Evening, Friend People!

As usual on Mondays (or sometimes Tuesdays, and rarely Wednesdays), please check out the Song of the Week page for some uplifting and feel good tunes! You get a special two-for-one deal today!

I titled today’s post “The Bright-ish Side” because sometimes the other side, or what some people refer to as The Bright Side, is not always all that bright. Sometimes it’s a touch bright-er but that sounds a tad too optimistic and a little misleading. Often what I have found is that the side is more of a shade of bright-ish than bright. But nevertheless, it is the better option.

Today started rather happily for me and then quickly went from happy to not-so-happy. When I am feeling not-so-happy (or like today, various shades of angry/frustrated/sad) I try extra hard to find the bright-ish side. So, here it goes:

I cleaned the apartment, took my pup for a walk, chatted with a friend and had a wonderful few hours of relatively pain free (as pain free as chronic pain warriors get) enjoyment. When the pain decided to return full force I became frustrated. It is so maddening, having to pay for a few hours of happiness with unrelenting pain. I compared this situation to an overprotective father waiting up for his daughter who is past curfew. “What did you think you were doing going out and enjoying your life! You know better than to be happy! Enjoy being grounded for a week!”
On the bright-ish side, I got to leave the house and enjoy the sun on my face. Those hours of joy cannot be taken away, even if the pain tries to do just that. I have photographic proof that I enjoyed (at least parts of) today.

My husband sat down to do our taxes and realized a couple of things related to my disability and work forms are not accessible online so I will need to phone for them. I began panicking and my anxiety became overwhelming. I can not think of two phone calls I would like to make less.
On the bright-ish side, I have a husband to help with the taxes and friends to talk me down when I can feel a panic attack coming on.
There are times I am sure that I can not survive one more day in this much pain.
On the bright-ish side, I know tomorrow is coming and there is a chance it could be better than today.

Sometimes I feel utterly empty and like I am as useless as they come.
On the bright-ish side, I have about a hundred people who will tell me that is not true.

There are times I am scared that nothing will make sense ever again.
On the bright-ish side, does anything ever really make sense? 😉

On the absolute bright side, I have amazing supports in all of you. I am more grateful to you than I can express. You are the bright side.

And if you ever need help finding the bright-ish side, I’m your girl. Practice makes perfect.

Love,

Courtney

Enjoying the sunlight

Enjoying the sunlight.

 

Box of Dreams

Good Morning, Lovelies!

As you know, I’ve just moved into an apartment for mobility reasons. While putting things away in their new, proper homes I’ve come across things that were just heartbreaking to see again.

No, I’m not talking about old photographs or home movies.. I’m talking about my Teaching Portfolio, Flute, Kids Books, and more.

These things from a life I thought I was going to have but is no longer in view. These artifacts are now in Courtney’s Box of Dreams… hidden far beneath bins in the back of my (walk-in!) closet.

When I was in grade school my best friend was in the school’s band so I decided to try out for it and really began loving the flute. I loved it so much my mom bought me my own flute! Things were going well with the flute until cancer kicked my butt and I was no longer able to play. I could never get enough breath to practice while on chemotherapy and when I rejoined my classmates for year 2 of high school the band teacher was not interested in helping me catch up to where I needed to be. I was so disappointed and now the flute is buried in my box of dreams.

Along with my flute is something even more painful to look at… my teaching supplies. I have huge Rubbermaid bins absolutely full of teaching supplies. These include crayons, text books, curriculum books, pocket charts, bulletin boards, binders of lesson plans, stickers and so much more. I ended up giving a lot to my sister who is an Educational Assistant, but it breaks my heart beyond words. This was a career I worked so hard to achieve and now my thousands of dollars worth of supplies are of little use to me in this condition.

All of my Educational Assistant supplies are buried in drawers. I’m not sure why I hold on to them when I am painfully aware that I will never be able to do that job successfully again. My back just won’t allow for it; but I can’t give them up. Working with kids with special needs is my passion, beyond anything else.

So what do I do now? Wallow in my broken dreams? That doesn’t sound like me.

Instead, I am creating a new passion. A new dream. Courtney’s Desk of Dreams, if you will.

In our new home I am getting my very own desk and on that desk I will write. I will colour. And I will do something I haven’t mentioned before now.. I will Vlog!

Once my precious desk is set up exactly to my specifications I will begin Vlogging! This is something I’ve never done before and I am extremely nervous about the situation but also thrilled and excited! I’ve never so much as posted a video on YouTube before so this is bound to be an interesting experience for us all!

It’s not about wallowing in what could have been. It’s about making the choice to find a new passion and a new dream. And you are all part of mine!

Thank you for being my purpose! Thank you for caring enough to read my words and connect with my feelings!

Thank you for always being there for me and helping me see what I can do instead of focusing on what I am no longer capable of.

And if you ever need anything, please let me be there for you too!

Love,

Courtney

 

 

***** This cover art is done by The Psych Scrivener*****

You’re Not a Bug.

Good Afternoon, Friends!

I know it’s been a while.. but some things never change. Check out today’s Song of the Week post to hear an old favourite of mine.

So, I’m all moved into the new apartment! It’s amazing. I feel so lucky to be here and to have had the help that we did; we really could not have done this on our own. In under a week the apartment is put together and looking like a home. Thankfully the pets transitioned well- far better than I expected! Lola is adjusted to not having a backyard anymore but now she gets 4 walks a day to make up for it, so I think she’s quite enjoying this new arrangement. And I am, also! I have more energy now than I could have ever expected. It could be adrenaline propelling me forward, but I’m grateful for it, whatever the case.

The title of today’s post seems a little weird, I know, but I was watching something a couple of weeks ago and jotted down “you’re not a bug to be squashed. You’re a warrior.” I’m not sure what I was watching and when I Google these words nothing familiar comes up. I could have been hallucinating the whole thing, but I am as inspired now as I was when I first heard (imagined?) it.

Our lives as spoonies can be just one appointment after another, one symptom after another, one doctor after another, one medication after another, until it is all consuming and your identity is lost. There is no shame in this. It is what it is. But what can happen is that you begin identifying as a patient, as an illness, as a collection of symptoms. You can begin identifying as something far less than you are. When you look in the mirror and see uncombed hair, unbrushed teeth, blotchy skin from a tear-stained pillow, you begin to see yourself as small. As a bug. As something that needs taking care of.

You are not these things. You just aren’t. You are a person. And more than that, you are a warrior.

You are not a bug to be squashed. You are not a problem that needs to be taken care of. You are not something that is to be ignored or removed. You are not an inconvenience. You are not just a patient or an illness. You are a force to be reckoned with. And if nobody ever told you this, I am telling you this now.

It is one thing to hear it/read it/say it, and another to truly believe it. So how do you put these words into practice?

I enjoy mantras or affirmations. Stick some Post-It notes on your mirror that say “I am Fierce, I am more than my illnesses, I am Powerful” or whatever it is you believe will be most effective for you. Whatever you need to hear every day until you believe it.

Ask some friends or family members what they think your biggest strengths are. It’s always nice to hear from other people’s points of view, especially if you’re having a particularly difficult time thinking of your strong points right this minute. I struggle with this myself sometimes. Write them down and look at them whenever you need to be reminded of the power within yourself.

Start writing. Even if you never show anybody. Even if you think you suck at it. Even if you don’t think you have anything to say. Even if you think nobody will care. Just sit down with a pen and paper (or your laptop) and just begin. You don’t have to start at the beginning. Start where you are in this moment. You can’t change anything about the beginning, but if you start now you can certainly change the ending.

Make your own rock star playlist. You can take from my Song of the Week section if you’ve been enjoying the tunes I’ve been selecting, or you can start fresh with all your picks. If you have a song that you think it amazing and really speaks to you, please feel free to share it with me! I’d love to use it one week and will totally give you credit! 🙂 We’re all looking to be inspired!

And, as always, message someone who has your back when you’re feeling like a bug again. I’m here for you if you want to chat. I know how strong you all are and would love to give you a pep talk if you’re in need.

Go out into the world and remember your strength.

Love,

Courtney

Breaking Up with my Make Up

I feel like I’ve been in a little writing rut as of late. So many things have been happening and I didn’t know if I should share them, or even how to go about stating the mile-a-minute thoughts in an eloquent way.
Nevertheless, I have things to say so I’m going to go ahead and just say them.

Firstly, check out the Song of the Week section for a pick-me-up chosen by my husband! If you like it, go ahead and comment or send me an email at chronicallycourtney@gmail.com!

In effort to speed through the changes that have been happening lately, I will bullet point what I can!

  • I got kicked off of my Long Term Disability Benefits but am fighting it! I have heard from a bunch of other Spoonie folks who unfortunately have been in this situation and I thank you for your words of support!
  • We are MOVING! And by moving, I mean we get the keys tomorrow! We are moving from this three floor townhouse into a beautiful apartment building where we are on the FIRST floor with easy access to the doors, laundry, and lounge room. There is also an indoor saltwater pool on the premises! So excited! But as you fellow spoonies know, this is an exhausting and extremely taxing process on our bodies. All for the best, though!
  • My toe surgery is over but now I feel like there has been a complication. I revisit the surgeon next week so I’ll keep you posted on that.

Now on to the real post….

We have been packing for a while now, clearing out the house of all the things we no longer need or will have room for in the new place, and it’s been a process to say the least. It’s always hard to pack when you’re still living in the place you’re packing! Some things are easy, like I could pack two out of my three drawers of panties (I know, it’s out of hand), but some things were harder to box up. The hardest being my gigantic makeup bag.

If you’ve been following my journey for a while I’m sure you’re no stranger to my relentless selfie taking and posting. As obnoxious as it may seem to my family (I’m looking at you, Michael), it is how I/we chronicle our days/hospital visits/weird reactions or symptoms/new makeup techniques/let the world see how gorgeous we are.  My husband can point to the exact selfie spot before and after I bought my contour kit.

These illnesses take so much from us; more than anyone could ever understand who isn’t in this position themselves. Dying my hair, piercing my ears/nose, getting new tattoos, buying cute leggings/pajamas, and doing our makeup all fancy is how we control our bodies when all other control has been taken away. I can not control when my stomach decides it didn’t like what I ate. I can not control the weight gain from meds when my back makes exercise near impossible. I can’t control when the misophonia will hate a particular sound. I can’t control what textures are tolerable. I can’t control what part of my body will hurt when or how to make it stop. Our lives seem to have been ripped apart before we even knew what was happening.

It makes sense that I’d hide behind these things. And I do. I completely admit it. Before my body got torn apart I was tattoo free with limited piercings and natural blonde hair. I currently am sporting 7 tattoos (2 more happening next month!), 11 piercings and purple hair. I also have more makeup than one person could think necessary. I hide my up-and-coming double chin with clever contour tricks and hide the pain behind killer smokey eyes. It’s the mask I show to the world. But it’s packed in a box now. Purposefully.

I feel the hairs on the back of my neck stand straight up as I think about leaving the house tomorrow with my makeup packed in a box I can’t identify. I feel the anxiety mounting higher and millions of butterflies in my stomach (not the lovey ones). I feel panicked. But I will brave the world tomorrow, fresh faced and ready. Not hiding, but open and prepared to show my true self as I go from one appointment straight to pick up the keys from our new place!

Who knows, this may just be the best thing for me. A little break up from my makeup. Even if it is anxiety inducing, it is good to let my skin breathe every once in a while, right? But don’t fret, my pets, I am in no way breaking up with my makeup for anywhere close to good. As soon as that box is unpacked  I’ll be back to my selfie taking self in no time!

Do you have any things like this? What is your mask?

Love,

Courtney

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New rook piercing in my ear and full on smokey eye

 

Makeup free
Makeup free

 

 

It’s Just Pain

Good Afternoon, Friends!
Please check out the Song of the Week for an updated weekly anthem!

It’s just pain, I whisper to myself again and again.

It’s just pain, I lie to myself over and over.

It’s just pain, I say as tears fall down and down.

It’s just pain, but who am I trying to convince?

If it were just pain, that might make a difference.

If it were just pain, it would be easier to explain.

If it were just pain, I could accept this burden.

If it were just pain, there could be an end in sight.

It’s just pain, but my voice is shaking.

It’s just pain, but my heart is breaking.

It’s just pain, but I know it’s not true.

It’s not just pain. It’s just me and not you.

 

It’s just pain, but it’s really not.

It’s a full on, every day, complete assault on our bodies.

And if it were just pain, it might be easier to digest. It might be easier to explain and comprehend. But it’s so much more than that, and that makes it harder for others to grasp. People have a hard time wrapping their heads around these types of illnesses because it is basically being tortured by your own body or immune system. Our bodies are killing us, pleading for us to give up whatever information they need but we don’t have it! We’re on our own here, it feels like. But we’re not. We’re joined together in this Spoonie War Zone, where it’s us against our bodies, ableists, and unkind doctors. It’s us vs them, and we’re experienced warriors. I’m so glad to be fighting this with you guys.

You’re all my Valentines.

Love,

Courtney

Made From Gold

Good Afternoon 🙂

As per usual on Mondays, please check out Song of the Week for some upbeat tunes.

Today I was thinking about what I would say to past Courtney to help her along her way to where she is now. I had a whole letter written before I realized something; nothing could have prepared me for this. Yes, I know some things now that past me could have benefited from but I don’t think the answers to that grade 11 math test would have impacted the future in any great way. Who are we kidding, I still don’t know the answers.

If I had known this is where I would end up I might have lived a baby proofed life instead of the full one I had enjoyed up until this point. Or I might have taken riskier chances that could have had horrible consequences thinking “ah well, I’d be messed up later anyway.”  The truth is that everything I have ever done, no matter how embarrassing or painful, has led me to exactly where I am now. And while I am certainly struggling health wise, I am completely blessed personally with my friends and family.

As I was writing the letter to past me I was thinking a lot about what I was like on chemotherapy for the two and a half years I battled leukemia. I was bald, pale, sick and weak looking I thought. I hardly let anyone take photos of me during that time and hated how I looked like a cancer patient. But I was a cancer patient, and bald, and pale… but I was not weak.
Now, being sick again, albeit a different kind of sick, I am looking at the world completely differently. I have the ability to chat with people around the world with multitudes of illnesses and see their bravery. I am one of them. I am brave too. I am but one of millions and millions, but I can still make a difference.
This new view on life is thanks to my old, sick self. Past Courtney was not weak. She was a warrior. And I learned from her.

My husband sent me a photo he found about something called kintsukuroi, which is the art of filling the cracks in pottery with gold. This thinking is that the piece is more beautiful now, after having been broken.

I really fell in love with this idea, because if I had never been past Courtney, that cancer patient, that warrior, if I had never been broken, I would not be who I am today.
And we are all so much more beautiful, compassionate, brave, and strong because we have known pain and weakness. The break could have killed us emotionally, spiritually, or physically, but it has only made us better.

gold

Even if you’re not feeling it today, you are brave, beautiful, and amazingly strong.

Love,

Courtney

 

Why I Walk

I Have Arthritis. Arthritis Doesn’t Have Me.

As you well know, I am big into community supports! We have such a beautiful community with lots of local supports we can access- that is if you know about them! I know a lot of people who go years, even decades, without even knowing certain organizations are at their fingertips, ready to help! I used to be so blissfully unaware of such organizations, that is until I needed them!

I have a pretty perfect husband (awww) and he is a PhD scientist researcher superhero man. When we got married in 2010 I finally learned what he did all day, every day when he rushes off to work in the morning. He works in a lab studying osteoarthritis (one of a few diagnoses I sport) and through this research he began to work pretty closely with The Arthritis SocietyI had received my diagnosis of Rheumatoid Arthritis the year we got married and the next summer I tagged along with him and his colleagues in what was my very first Walk to Fight Arthritis walk!
That year it was raining, further irritating my condition, and I only walked the 1km.
My second walk the weather was very warm and I completed the 5km while achieving a somewhat serious sunburn!
The third year I remembered my spf50 and did a 5km walk, no worries!
My fourth year was a hard one. My illnesses piled on and I had 1 surgery under my belt. 1km achieved!
My fifth walk this past year I had my cousin, my best friend and my husband join me as I walked 1km with a cane.

So, why do I walk? Why do I raise money all year to (maybe) walk 5km in unpredictable weather with Michael and his colleagues? Why am I looking forward to spending my birthday volunteering at a fundraiser?
I walk because I am passionate about helping out to this cause that is dear to my heart.
I walk because I can. And I will continue to walk every year I am able.
I walk because I believe in The Arthritis Society. They are an amazing organization that has helped me heal in more ways than one.
I walk because Arthritis affects not only me, but my husband, family, friends, and millions of people around the world, directly or indirectly.
I walk because I want people to know that Arthritis Doesn’t Have Me!
I walk because other people can’t.
I walk because there are over 100 types of arthritis and they all suck!
I walk because arthritis has taken a toll on me emotionally, spiritually, financially, physically, and has taken so much from me including mobility, freedom, independence, and more.
I walk to change this outcome for others.

This year the walk will be on my 29th birthday.

I’ll be there. Will you?

Courtney

 

My First Walk
My First Walk
My Second Walk
My Second Walk
My Third Walk
My Third Walk
My Fourth Walk
My Fourth Walk
My Fifth Walk
My Fifth Walk