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The Ugly Flare Thoughts

We all have them.  It’s okay to admit that.

For me it feels like every other week is a flare. I’m not even sure how that is possible, but it is and it’s not fun.

I’ve begun jotting down some of the thoughts that go through my head when I am stuck in bed riddled with pain. Maybe you can relate?

This is it. I’m going to die. This pain has to mean I’m dying.

How is this amount of pain even possible?

This is it.  This is my life now.

How many heating pads can I have on how many body parts at once?

Am I maxed out of meds now? Or can I take more?

My bed and my body pillow have taken me as their own. We are now in a polygamous relationship and I’m okay with it.

I feel like my teddy bear is the only one who gets me.

I can no longer cry. My eyes are swollen and I have no more tears left.

When was the last time I showered?

I’m not going to shower today.

I don’t remember what outside looks like.

There is an outside, right?

Life is pain.

Breathing hurts.

Either I sleep all day or can’t sleep at all. There is no middle.

There is no comfortable position. There is only toss and turn and thrash and cry until you eventually pass out.

Why is my skin so uncomfortable?

When was my last good day? I had one at some point, right?

How long have I been in bed? 10 minutes or 10 days?

Come on, Netflix, I’m f***ing here! I don’t need this shit right now!

There will be another good day. There will.

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Chronically Vlogging!

Oh hello there, friends!

I know it has been a while and I appreciate your patience!

As you know, the life of a chronically ill person is unpredictable and often inconvenient. Plans made around us are in faint pencil and subject to change at any second.

In exciting news, however, I have begun my journey into vlogging!

It has been a terrifying ordeal but the support I have received has been amazing and overwhelming, so thank those of you who have checked them out.

For those of you who have not and this is brand new information, here are my videos!
Please feel free to comment, like, subscribe, and/or share!

I will be adding a brand new video to this lineup today (hopefully, if the stars align! haha) so stay tuned for that!

Thank you again for your ongoing support!

Love,

Courtney

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How to Have a Relationship in Chronic Pain

Good Afternoon, Warriors!

As usual with a new post, here is the new Song of the Week to empower you and give you strength!

I have to be honest here, when writing these “how to’s” I feel a bit like a fraud! Who am I to tell other people how to do anything? I am no expert in any sense of the word. I am just a girl living with these illnesses, trying to help people whenever and wherever I can. I do have a pretty successful marriage that I believe is in large part due to my amazing husband. That being said, here is how we make it work!

  1. Honesty is key. Both partners need to be straight up with one another at all times. If you’re having a bad (or good) day, they need to know what to expect. If you aren’t up to outings, let them know! Pushing yourself will only hurt you both. Keep it honest about the realities of your conditions. And try to always let each other know what you need. Don’t hold things in until you burst.
  2. Education is Important for Support and Understanding. Chronic pain workshop and education classes can be outstandingly helpful for both parties. Workshops together and separately are vital for understanding. When both of you understand the illnesses and treatment plans you can better work towards a sustainable and healthy future.
  3. Support Groups are Supportive. Not just for the chronic pain warrior, but for the caregivers as well. Caregivers hold a lot on their plate. They feel like they always need to be strong and able to help, but they need help too! It is not easy for them to watch their loved one in so much pain and feel utterly helpless about it. It is important for them to attend Caregiver Groups so they feel supported as well.
  4. Keep the Intimacy Alive! Spouses can feel like nurses if their time is spent arranging pillows, giving medications, and turning on heating pads. It is important to still do “couple things” when you’re up for it! Dress up and go on a date, have a picnic outside, have sexy time! These things are absolutely vital. Orgasms are good for pain relief! That’s an actual fact! Sex and Arthritis Sex and Chronic Pain give some helpful hints when discussing sex in the realm of chronic pain. I know it’s a personal topic and varies from situation to situation.
  5. Keep up with the Inside Jokes and Netflix Binges! My husband and I have really gotten closer throughout these illnesses. I think it’s hard not to, when it’s usually just us here dealing with the day-to-day of the symptoms and realities. Because of this, we have many inside jokes and our own little language basically. It brings us closer as a couple and strengthens our bond. We have a couple things on Netflix we’ve rewatched about a million times (Bo Burnham- What) and enjoy finding new shows to binge on!
  6.  Remember to Appreciate One Another. This is probably the most important. Just be appreciative of what each of you brings to the table. If your spouse takes great care of you, thank him/her. If you book the appointments and are there for morale boost, that’s an important job too! You’re a team. A damn good one, too. Please and Thank You’s are still the magic words.
  7. Find things to do That Aren’t Illness Related. You can never really take a break from these illnesses. They’re chronic. And we all know what chronic means (thumbs down). But if you like to play computer or video games to take your mind off of the pain, or can beat each other at Words With Friends, those are cute options that keep you connected in a non-illness way!

    I hope this was even a little bit helpful! If you have any questions please email me at chronicallycourtney@gmail.com.

    Love,
    Courtney

    *Disclaimer- Bo might not be for everyone. He is a comedian and can be offensive depending on your preferences and tastes*

 

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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

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To the People who Don’t Know How to Respond to my Chronic Pain

Dear Friend/Acquaintance/Family Member/Colleague/Stranger in line at the mall, etc.,

Good Morning!
I hope your day thus far has been well and that both your heart and mind are open as you continue on reading this letter.

I am used to getting looked at when my husband pulls into a handicapped spot, or when I am out with my cane or walker. It is hard for people to grasp a young woman in need of mobility aids; a second glance is a relatively natural response. The questions and comments I hear vary from day to day, but the most common one is “what did you do?” somehow implying that my disability is my own error because the only reasoning they can come up with is that I fell while drunk and in heels. It’s not a ridiculous assumption as I’ve had my own fair share of liquor-induced accidents, but the shape I’m in currently is in no way my fault.

For the most part I welcome questions and inquiries. It is better that you know the truth so that the look of shock or ignorance is spared for the next person like me you come across. I am definitely not alone here and there are millions of chronic illness warriors around the world who need any bit of advocacy and awareness I can spread, and I am more than happy to do so!

Here are answers to some of your pressing concerns:
1. These illnesses are chronic which means they will last an incredibly long time, most likely the rest of our lives.

2. We have probably tried every single “miracle cure” you’re trying to sell us. Thank you for your efforts (and we may bring them up to our doctors) but we don’t need to get your hopes up, or our own. I’m glad it worked for you sisters’ husbands’ friend but that doesn’t mean it will work for me.

3. I know I am too young to have these illnesses. But nevertheless, I have them and this is the situation. Neither of us needs to lament over this fact any longer, thank you.

4. Diet and exercise are important, no doubt about it, but if I didn’t need to take handfuls of life saving medication I wouldn’t. These are prescribed for a reason.

5. What we do need, more than your stares or medical advice, is a smile and for you to maybe hold the door open for us. Simple kindness goes a very long way! :)

6. If you see me stirring around uncomfortably in a waiting room/office/movie theatre it is most likely that I’ve been in a position too long and need to move. I’m trying to be inconspicuous and I apologize if I’m in your way but the pain is usually out of control and a little re-positioning goes a long way.

7. If you see me at home (yours or mine), you may see me taking all sorts of pain medication. No, I’m not addicted, these are necessary to get me through the day. Please withhold your judgement. I’m not happy about the situation either.

8. Yes, the mobility aids are necessary. They literally aid me to be mobile. If you’d like me to move Sally the Cane or Felicia the Walker are coming with me.

9. It can be incredibly difficult to watch someone writhe in pain and it brings tears to my eyes that you have to see me like this, but it is my life. I want to spend time with you and be the old me, I want it more than anything, but the new me needs you also. When I’m in this sort of pain please just let me be and maybe offer to grab my meds/tens machine/heating pad. I know you’ll want to help more but your presence and understanding are all I require.

10. Remember I’m still me. I am still up for movies/netflix/and gossiping all night long. I can rock a movie marathon with Sour Patch Kids like nobody’s business.

Thank you so much for all you do for us. I know chronic pain and illnesses are hard to understand- I still struggle with grasping all of these straws- but your willingness to stick it out with us means the world.

Please spread this to all your friends! Understanding is key!

Love,

Courtney

©chronicallycourtney

 

 

 

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Imperfect Human

Good Afternoon!

I have a secret to share today….

*Deep breath*

I am human! I know this may come as a shock to you. I’ve kept my identity so well under wraps that I’m sure you assumed I was some robotic pod person until now. If you need to take a minute to grapple with this truth, go ahead and take that time now.

No? I wasn’t doing a good job hiding my humble humanness?  Shoot.

In case I was fooling you, I am in fact a human. I have good days and a lot of not-so-good days. That’s what ultimately connects us all. I find it hard to really create a close friendship with people who fake their feelings. I’m not all about that. I want to see the truth, the vulnerability in people. People who can own their faults as well as their strengths. Great friendships are bonded on these.

I ache to show nothing but my strength, but then why would you want to read what I have to say? I’m not comfortable with being deceptive in that way. Nobody wants to hear from somebody who is lying about living a perfect existence, so far removed from your (and really, their) own reality. It is fun to watch and look up to celebrities but I don’t feel any sort of relatedness with them. I do feel related and connected to you, my beautiful reader and friend!

The truth is, I cry, I scream, I wallow, I toss and turn under TENS machines and heating pads trying to find a comfortable resting position.
The truth is I have trouble getting up from a chair, or a toilet, or out of the car.
The truth is I need a nap after applying my makeup because, while fun, even that exhausts me now.
The truth is sometimes I hate this life and everyone in it (except for you, obviously).
The truth is I am terrified about 90% of the time.

But I’m only human. And so are you. And while we are all beautiful, brave, and strong as all hell, we are only human. And it’s okay to admit that to yourself and to other people. Don’t try and do more than you can do. Don’t risk your health or well being to prove that you’re “normal” (whatever that even is). Love yourself enough to be yourself. We’re all living this life and doing the best we can. And it’s perfectly imperfect. And that, my friend, is wonderful.

Love,

Courtney

*** The artist for this beautiful cover photo contacted me so I can give credit for this piece! Thank You to Taii / Pokku / Glitch (at http://touzhaii.deviantart.com/art/cause-i-m-only-human-470576311) for this gorgeous piece of art! If any other artist out there sees their piece as a cover photo please contact me so I can give you credit as well! ***

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Dear 2015,

Dear 2015,

Have a seat… this may take a while.

2015, we’ve had some good times. I’ll try to remember some of them; I’m sure they’re there.

But looking at the year as whole, it wasn’t the greatest. I went into it with such high hopes, thinking that it couldn’t be any worse than 2014… how wrong I was.

I’m not going to enter 2016 with such ignorance, because I’ve realized that it can always be worse.  (more…)

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Sometimes My Sister Makes Me Cry

Good Evening (or morning, or afternoon, or whatever time it is when you’re reading this! I hope it’s a good one!),

Before I get in to why my sister is amazing and mean at the same time, be sure to check out my Song of the Week page and maybe open it in YouTube so you can have it playing while you’re reading this post 😉

My younger sister, Key, is a beautiful woman with an even more beautiful soul. Both of my sisters are such better people than I am and I try every day to take after them. Key, however, is an artist. She designed my spoon logo (I dragged her out of bed to sketch it and she had it sent to me within 20 minutes. She’s that good) and gave me this ridiculously thoughtful gift for Christmas. I’m not going to lie to you, when I first saw it I was awfully confused. (more…)

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Twas the Life of a Spoonie

‘Twas the life of a spoonie when all through the house

She was pacing and crying, disturbing the mouse

Not a dish was done, or a floor that was washed

But there was snow on the drive, on the window was frost

She crawled to the table to reach for the phone

While waiting she listened to the dial tone

Who was she phoning this late at night?

Refilling her meds to help keep her upright!

She turned on one heating pad at a time,

Smiling, she told herself she was fine.

She needed rest but it was holiday season,

If Christmas was ruined, this wouldn’t be the reason!

Rubbing creams and popping pills

Throbbing, stabbing, painful still.

She knows she’s not feeling great,

But alas, she shrugs, crying can wait.

Merry Christmas, Spoonie Friends!

Remember this season will soon end.

 

Love you, Warriors.

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That Moment When

Good Afternoon Spoonies/Spoonie Supporters/Friends Who Stumbled Across My Page!

Here are some moments I’ve experienced and maybe you have, too!

That moment when you wake up in agony but can’t move to get your medication so you lay silently with tears streaming down your face until someone wakes up to get them for you or you gain the strength to reach your medicine dispenser. (more…)

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