I’ve Lost Track.

Good Morning!

I’m sorry I’m over a week late for this, but I have updated the Song of the Week page (finally!) and it’s a pretty good one, if I do say so myself!

These illnesses have taken so much from me, limiting me to the point where I feel like a prisoner in my apartment, bedroom, and body.

I have lost track of the things these illnesses have taken from me.
I’ve lost track of the number of times I’ve cursed these conditions, this body, and God.

I’ve lost track of the number of times I’ve said “I can’t do this anymore” and thought that I meant it.
I’ve lost track of the number of times I’ve wanted to quit my life, and thought I would.

I’ve lost track of the number of times I’ve prayed for the pain to end.
I’ve lost track of the number of times I’ve prayed for my life to end.

I’ve lost track of the number of days I’ve been unable to work a job I loved.
I’ve lost track of the number of friends I’ve lost because nobody wants to deal with this.

I’ve lost track of the number of tears I’ve cried and profanities I’ve spewed.
I’ve lost track of medications I’ve taken and the side effects I’ve endured.

I’ve lost track of the plan for the life I thought I would have.
I’ve gained an appreciation for the life I have now.

I’ve lost the need to plan, because I lost the life that could be planned.
I’ve gained friends along the way who have opened my eyes.

And I’m thankful for the journey.

Love,

Courtney

 

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

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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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

 

 

 

Spoonie Stuck in Stress

Good Afternoon Lovelies!

First, as usual, check out my Song of the Week page for some mood music to go along with today’s post.

Stress is not a friend to spoonies, which is almost comical (if it wasn’t so darn painful)because our lives are full of stressors, from doctors appointments to dealing with insurance companies. There are rarely stress-free days for people who are chronically ill.

On any given day our pain begins at a 6-8 and more than likely will escalate before anything else. If we’re staying home we are plagued by housework we may not be feeling well enough to do, trying to book appointments, possibly dealing with insurance or social aid for disability benefits, prepping for hospital stays, or trying to convey the weight of your illnesses to any number of individuals who may question the severity or reality of your pain.

All of these things make for a very unpleasant atmosphere for people who are already dealing with extenuating circumstances. I have yet to meet even ONE chronically ill person who wants to live like this. We are not beggars, fakers, or attention seekers. We are people who want to live a normal, healthy, happy life and we do not need to be questioned, antagonized or have to prove the gravity of our illnesses.

But this is a part of our lives. I’ve heard from friends that have been cruelly approached about using their parking permits or mobility aids, and I’ve heard horror stories from people who have cried themselves to sleep because friends and family do not seem to understand what they are going through.

It is an impossible feat, living this way. But we do it because it have to. Judgement and skepticism come along, part and parcel with being chronically ill. But aren’t we in enough pain? Aren’t our lives painful enough? I think they are.

So here we are. What do we do for stress? Colour. Nap. Watch Netflix. Practice Deep Breathing. And always remember that you’re not alone. You have your own built in support system with me here. I can rant, complain, and cry with the best of them.

Keep your cool, kids. We’re in this together.

xx

Courtney

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Fight! Fight! Fight!

Reading these words, written in this way, seems like something high school kids shout in a formed circle around two bloody-nosed kids who are roughing each other up to appear stronger, tougher, and more bad ass than the other. Looking back, those kids probably didn’t know what they were fighting for, or even about for that matter.

But I know what I am fighting every morning when I wake up. I know what I’m fighting against based on my symptoms and the many diagnoses in my overflowing medical binder. I have many reasons to keep going when I look in my husband’s eyes and my nephew’s brilliant smile. I never know what the day will bring or where this journey will take me, but the one thing I do know is that I’m a fighter.
And this life, with this body, and these diagnoses is how I know I’ve been called to fight.  Read More