Stronger

I’m going to do something I haven’t in quite a while. I’m going to be vulnerable. I’m going to say something I’ve wanted to say for over a year.

🎵You’re alive, you survived, it’s a sign
And the proof is in your pulse
Brighter stars only shine in the dark
You are stronger than you know🎵

This hits right in my soul, given the last 539 days. But I know I can do this. Because I’m still here. When my heart gave out that day, and I flatlined, I came back. I fought like HELL to come back.

No, I’m not over it. No, I’m not okay. Far from it. But day by day, I’m getting there. Day by day #IGetALittleBitStronger

The lyrics are from a song by Citizen Soldier called Still Breathing. One of my favorite Artists lately. They have yet to write a song that I don’t relate to or love.

https://youtu.be/JFAs8GKyZJE

I’m so beyond grateful for the amazing but small, support system I have. I love you all and I can’t thank you guys enough ❤😘

Welcoming Changes

Today, for the first time in over a year, I woke up HAPPY. In a great mood and even had less pain than normal.

I feel more like myself then I have in over a year and I can’t tell you how amazing it feels 🥰

Maybe its because I’ve had so many rough days, but to me, it feels ‘weird’ to feel like this.

Honestly, I’ve spent the last year struggling and wondering if I would ever be okay. Little things would trigger me and I’d be right back there…in the hell I went through. Don’t get me wrong, I know I’m not suddenly ‘better’, its not perfect days from here on out.

But this gives me hope for better days ahead.

Tonight with my workers we went to a small craft fair type thing in my tiny town and even though I shouldn’t have spent the money, I saw these and couldn’t resist. She showed me how to do the piece all by myself, it was really simple but fun. And I bought a smaller one that is a magnet for your fridge as a kit and am going to do it later tonight. It comes with everything you need. Then, of course 😂, I saw the elephant keychain and had to have it. My Grandparents went on a mission to Thailand years ago and got to ride and elephant and my Grandma loved them, she collected mini elephant statuses and other small things.

The saying immediately made me think about how everything has gone and how I probably have become a little TOO ‘comfortable’ in staying to myself and how I don’t want to be like that anymore. How I may have to take life one day, or one hour at a time, and that’s okay.

I know this isn’t over, there are probably plenty of rough days ahead, life isn’t ‘fixed’ or ‘perfect’, but for the first time in a long time, I feel like I’m strong enough to handle it.

Just breathe. I got this.

Still Standing

May is when the world disappeared beneath my feet a year ago. May 22, 2021. That whole month was many things. Traumatic, draining, Toxic. Amazing (the rare moments when things were good)

I have fought like HELL to get where I am today, mentally, emotionally and even physically. This has been one of the hardest years (almost) of my life.

BUT, here I am. Despite everything life threw at me, here I still am. Still standing. Still fighting.

In my head, I still haven’t gotten anything figured out, still struggling every day. To my counselor though, she’s proud of me ❤ and that means the world. I’ve been working with her for years. And when you find someone you “click” or connect with, you want to keep them for as long as you can.

I’m so grateful for the amazing support system I have. I honestly don’t know how I would’ve gotten this far without them.

I’m doing my best to get back into blogging, please be patient with me as I get my feet back under me again.

Stay strong. You can do this. Always just a message/email away if someone needs/wants to talk.

Have a topic you’d like to see? I’m always willing to take requests on topics. You can email me at thespooniesanctuary@gmail.com or find me on Facebook

The 7 Stages Of Trauma Bonding

This isn’t easy for me. But I can’t keep blaming myself, avoid talking about this, spending every moment trying to forget or playing everything that happened on a never-ending loop. I refuse to live like that. 9 months ago my whole world shattered, I lost who I was and even still I honestly don’t even recognize who I was then and who I am now. But I am trying. Slowly but surely.

I saw this video while scrolling Facebook called “The 7 Stages Of A Trauma Bond.” I don’t know how I came across it as most of the suggestions I get are usually for DIY crafts and cooking, but I am glad I did. Because it explained so much. The pieces fit. Sadly, pathetically, they fit. And I am so full of anger about it. I couldn’t see it and I know everyone always says “Hindsight is 20/20” and how if you’re too close to a situation, you can’t see what is right in front of you.

And I get it. I do. But that doesn’t change the fact that I should’ve listened to those who love me. To those who know me. My mind is filled with so many “What ifs”, “I should’ve” “If only”

I know I can’t go back and change what happened, but I wish with every fiber of my being that I could.

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1. Love Bomb Stage

“Love bombing is when you are showered with non-stop gifts, compliments, and attention. This begins a cycle of abuse where the love bomber withholds love and attention to manipulate you. Being showered with love can feel so good! It can be an instant confidence boost to feel so wanted and appreciated by someone.”

2. Trust And Dependency

“In this stage your partner does everything they can to win your trust. You will feel you can rely on them, and are beginning to feel dependent on them for love and validation.”

3. Critical/Criticism

The criticism generally begins slowly, and might seem like the normal progression of two peoole getting to know each other more. It will become persuasive, and you will find that you are often being blamed for things, including their feelings or perceptions and that your partner may become more demanding. These demands will gradually extend to an insistence on changes in your normal behavior, personality, or relationships with others.”

4. Manipulation/Gaslighting

During this stage, you’ll feel lost and confused as your partner convinces you that your feelings and perceptions are invalid and that all problems in the relationship are solely your fault. This type of emotional manipulation is called “Gaslighting” and can make you seriously doubt your own thoughts and reactions.

5. Give Up Control/Resignation

You are getting absolutely nowhere using your normal methods of problem solving or open discussion in a relationship. Every time you try to work things out, your partner unleashes a huge amount of blame and criticism that is both painful and exhausting. You decide to try and do things their way to resolve conflict and get things back to stage 1.

6. Lose Yourself

Any attempt to push back against the way things are in your relationship result in extreme emotional manipulation and abusive behavior from your partner. Your family and friends, who have probably expressed concern about the relationship in the previous stages, are now very worried. You have lost your confidence and your bearings, and will do anything to just avoid another fight.

7. Addiction To The Cycle

At this point, your body is running on near constant levels of high stress and craving relief or pleasure, creating a cycle of dependency that can feel very similar to a substance addiction. You probably have some sense that the relationship is bad for you, but are either making excuses for it (Like your partner has a troubled past or trauma of their own), or feel unable to leave it.

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I am doing the best I can, leaning on those close to me, mainly my best friend, my ride or die, “My Person” and I can’t tell you how much it meant to me when tonight my best friend told me “I don’t care how many times you say it, I’ll hear it every time.”

I have been struggling lately with thoughts that I should ‘be over this’ by now, or that by talking about it again, I am just keeping myself stuck in the moment. And while I agree to a point, I also believe in the power of communication, of writing how I feel if I cannot voice my thoughts using my actual voice.

Thanks to my amazing Grandma, I learned to LOVE writing. It was how we communicated when I struggled to find the words to explain how I felt. We used to pass and notebook back and forth (Like in elementary school and passing notes) until I learned to “Use my words”

Even then, even after I learned better how to communicate correctly and actually talk about my feelings, thoughts, troubles ect, I still leaned heavily on writing and I have dozens of journals filled with the thoughts in my head.

I lost my Grandma two years ago this April and am just now trying to get back into writing, for both her and me. I know she would hate that I gave up what I love most when she passed away. And honestly I hate that I lost my love of writing for a while as well.

Writing is who I am. It’s a huge part of what makes me “Me”. When I asked a friend to say the first thing that came to mind when they thought about me, they always went straight to me being a blogger, both for my multiple Chronic Illnesses, as well as the personal stuff that I deal with in my life.

I have been diagnosed with Interstitital Cystitis, Endometriosis, PFD (Pelvic Floor Dysfunction), Anxiety, Depression and Epilepsy in my short almost 28 years and been dealing with it for over 10 years now.

I am doing my best to recover from the events of the last 9 months and while some days are really good, most are still really challenging. It’s affected me emotionally, mentally as well as physically. The stress from everything has caused my body to go into ‘flare mode’ where my symptoms of my illnesses flare up and get worse.

I do the best I can to keep the stress down so it doesn’t happen, but sometimes it feels impossible, that maybe I will always feel this terrible physically and mentally. And sometimes I have flare ups for seemingly no reason at all. Like it just came barreling out of nowhere and tackles me.

I slowly feel myself getting stronger. Some days are better than others, some days I make amazing progress and some days I stay in bed all day, not moving. Ignoring the world, stuck in my own head. But I fight like hell each day to fight the thoughts in my head, to not let it bring me down even farther.

I have to deal with this, or it could destroy everything all over again. And I never want to go back to how I felt, how I still feel sometimes. I can do this. I have to. I will beat this. “I have gone through worse,” that’s what people say, right?

This is my turning point. It has to be.

I know I can do this. Maybe it’ll only be one day, one hour at a time. But it’s better than nothing, right? I know I will come out on the other side stronger, mentally and emotionally, but honestly right now it just hurts like hell….

Stronger Than My Storm

🎵I’ve come to understand
That tragedy’s a second chance
My dying breath is where I was born
Now I’m stronger than my storm🎵

So, I have been wrestling with the decision of if I should post this (as it is personal and raw for me) for several weeks and decided to take the leap and post it. So…here we go. I’m apologizing in advance for jumping all over the place. My thoughts were all over the place 😕

I will not be going into details as I am still trying to deal with everything myself still, but I was encouraged to post this by someone I look up to very much.

6 months ago, my whole world changed forever and I ended up in the ICU in critical care on life support for several days. They were unsure if I would make it. I spent several weeks in the hospital recovering and while recovering, I somehow came across these two songs that now mean a lot to me. I’m Not Okay and Stronger Than My Storm, both by Citizen Soldier

As I have started dealing with everything that happened, some of which I’m told I may never remember,  I’m also having to figure out who I am all over again.

Because I am not the same person I was. I don’t know if i ever will be. And you know what? That’s okay.

I am stronger now. But just because I’m stronger, that doesn’t mean there aren’t some REALLY hard days.

Trust me when I tell you, life will get better. Maybe not tomorrow,  not a year from now. But slowly, you will begin to heal.

You just have to remember on your bad days that it’s okay to not be okay.  You will get through this. Just focus on one day, one hour, one minute at a time.

It is okay to reach out for help. It’s okay to admit you’re not okay. Just breathe. And know you are not alone.

Along with having to figure out who I am again, I have also had to begin the process of learning to be okay with what I may never remember. And let me tell you, it’s a struggle every single day.

Because how do you get over something you don’t remember?! I know what I’ve been told from those who were there with me through it all and through the medical records.

But there are still big gaps in my memory and that is hell. I can’t keep holding onto this. I don’t want to. It’s tearing me up inside.

Thankfully I’m blessed with an amazing counselor and a fantastic fiance who have been with me every step of the way and continue to encourage me on my bad days.  Who listen to me talk whenever I need it, even if it’s a random trigger and I just spout  off what I’m thinking.

“Some days she has no idea how she will get it done, but everyday she does.”

I am far from perfect. I have more bad days then I would like to admit. Little things trigger me, and of course one of them is the one thing I treasure over writing. Music.

So many songs are ones I once loved and now can’t bear to listen to.

But, slowly, one verse at a time, I am “taking back the music” as my counselor would say. I am doing the best I can.

Please be patient with me. I know my writing has been all over the place and rare, but I am trying.

One day at a time. We got this.

Life

Dear Addiction

Dear Addiction,

There you are back again pulling the rug right out from under me. You invade my thoughts, my dreams, even my life when I am awake.

You are always there. Watching. Waiting. Trying to get me to slip up and take solace in the sweet words you whisper as I sit there staring, trying to fight it with all my heart.

I HATE You. This is not who I am anymore. You may have had a hold on me, always pulling me down till I thought only pills and getting high was the answer. But guess what? No more.

I played into your hands for years. You almost destroyed everything I care the most about in the world. My family. My relationships. My friendships.

I almost lost everything because of you.

Oh, it’s my fault, you say? You are partially right. But you are also wrong. Yes, I chose to do the things I did, but you were the one whispering the ‘sweet nothings’ into my ears late at night.

You, dear Addiction, do not have a hold on me anymore. Yes you will always be there, but I know now that I do not have to listen to you. I am stronger than this. I can beat you.

You laugh at me, the sound echoing in my head. Saying I will never be free of you. That I will always be back.

But I won’t. I have something here that you can never match. I have a wonderful family. I have a amazing understanding boyfriend. I have the strongest support system I could ever ask for.

So, my dear addiction, you and I are done. For good this time. And the best part? When I feel you trying to pull me back in to the darkness I used to consider my friend, I will have 1,000 friends and family pulling for me here.I am not alone. But you are now. Enjoy the darkness, my old friend.

MIA

Hey, everyone. I know I’ve been MIA for…way too long. But. slowly, I’m trying to come back. To writing. To ME. To someone who knows now that struggles can and do make us stronger. To become someone my Grandma would be proud of.

There is so much to update on, but, as of right now, I do not want to get into that. Not right now. But I would like some good thoughts, vibes, prayers my way if possible ❤

But I WILL say, music has ALWAYS been my go to, other than writing, to work through some of the hardest “storms” of my life. While I was battling yet another “storm” and was battling my own personal demons along with it, I came across these two songs and I will admit it, they did make me cry. They both have such a meaning to me now.

“Stronger Than My Storm” and “I’m Not Okay“; both by Citizen Soldier.

Please be patient with me. I’m doing the best I can. One day at a time.

I love you all. Don’t be afraid to reach out to me if you need anything ❤

The Words We Use (Repost)

If you have a topic you would like to see featured on here, feel free to contact me on any of my Social Media Sites and I will write about it for you 🙂 I also take requests for quotes and you can see my gallery of quotes I’ve made here

Reach out, you never know who may be touched by you. Your words may be just what they need to make it through a rough day.

I promise if you reach out to me, I will always be reaching back. Because no matter what your brain or other people try to tell you, You. Matter. Always.

I was listening to the radio one day and they started talking about labels and how people see each other and it really hit home with me so I wrote this blog post which happens to be my most popular post and the first post shared worldwide on The Mighty and IC-Today!!

This blog post was hard for me to write but its also the post that got me some amazing opportunities like being a contributor for Chronic Illness Bloggers (You can see my listing on CIB here) and I just partnered up with Antidote which you can read more about in my recent post here

“No one really talks about what happens if you’re sick and you don’t get better but you don’t die either. You get to live in the margins because its either/or- you’re getting sick or you’re getting better. There’s no in between in our culture. No room for the chronically ill.

-Unknown

Since being diagnosed with Interstitial Cystitis, Endometriosis and Pelvic Floor along with Depression and Anxiety, I feel like most people have stopped seeing me. They seem to only see the disabled girl with Chronic pain and diseases that have no cure.

When I am introduced to someone new the words and phrases people use to describe me makes me feel small. They make me feel like I am not doing enough to “make myself better.” When they talk about me, they only seem to see the endless stream of tests, doctors, surgeries. They have stopped seeing me and now see me as “The girl with Chronic Pain.”And it makes me feel like I need to push myself harder when in reality I already push myself beyond my limit every single day just to try and have a sliver of the life I once had.

My illnesses are not usually fatal and sadly I’ve come to realize that if you are not in danger of actually dying then people don’t feel the need to help you or use their own energy and resources to help you. This may sound harsh, but I am finding it to be more and more true. When most people hear that someone has a “Chronic Illness” they know that it is most likely going to “drag on” forever so there is no reason to try and help you if you are going to live with your disease forever if there is no cure.

People with chronic illness face a lifetime of pain, exhaustion, and disability. A lifetime of people telling them to get over it, of people telling them they they are too depressing to be around, a lifetime of failing to meet everyone’s expectations, but that is not enough to attract anyone’s attention. Nobody would ever tell a cancer patient to just get over it and stop dwelling on their illness, but people with chronic illness hear this practically every day and that is ridiculous. It is also very hurtful to hear and some of us hear it over and over from our family and friends who cannot understand how we can be fine one minute and then the next we are curled up on the floor or the couch in pain.

I know for some of the best people I have ever met, those who have struggled with not having a diagnosis for years, finally having a name for their symptoms and illnesses is incredibly validating.

Once you finally have a name to what is wrong with you, it makes it much easier to treat it, or at least manage your symptoms and pain. But along with the names of your illnesses and symptoms also comes judgements; at least it does in my life. Some people research your illness and learn at least a little about it so they can help you deal with the emotional part of it and be there for you but then there are those who search google and find places that, for a one time payment can “cure” your disease, or this new medicine that is on the market that has amazing reviews online for being natural or articles by people that have “cured themselves completely using ____” or how thinking positive and talking about your feelings you can convince your body that you don’t have an illness and can therefor “cure” yourself. But then they get upset when you don’t read all the “research” they did or do everything they think you should be doing because the internet says it will help you.

I have only had my illnesses coming up on 5 years, but in that time I have come across so many others in support groups and illness forums that sometimes say they wish they could have a disease like cancer because people with cancer get support from family, friends, even sometimes people they just met. People seem to care more about cancer and they don’t care much if at all about chronic illness because it will go on forever. It’s Chronic. Most Chronic Illnesses have no cures, only treatments so some people will just assume it will be the same thing every day so why bother helping if it is going to be a never ending process?

For me there are not any words on the planet that adequately explain how difficult it is to be disabled by an illness that no one believes is real. For people to not understand how you can look fine on the outside and be smiling but be hurting on the inside. For people to understand how you can do a certain amount of things one day then the next have no energy to do anything, sometimes even getting out of bed is a challenge. For people who can’t understand how you can be fine one minute then the next you are in severe pain. Not to mention the insurance companies will pay for cancer treatment, they won’t pay for most chronic illness treatments or medications. Most of us have to come up with the money out of our own pocket to pay for a medication that may help a tiny bit or not at all.

We are people first. We are still human beings who have feelings and hate that some people have stopped seeing us as a person, but now see us as our illness or our symptoms. It is very hurtful for many of us. We just want some understanding. Some support to know we are not alone. I know my expectations of family and friends can just be silly, but is it really too much to ask for some support even if they don’t believe that I am sick? I could really use some support as I am going through this hard part in my life. I wouldn’t wish my life on anyone, and I do everything I can to be supportive of family and friends even if I don’t agree with their lifestyles or choices. Is it so hard to expect them to extend the same courtesy to me?

The words people use to describe others are important. Based on descriptions and words from other people, when you meet someone new you usually have already formed an opinion based on what others have told you about them. For those of us with Chronic Illnesses, most people automatically come to the conclusion that we are different, that we will never be like them because we have a different life then they do. Most people assume that we will never want to hang out because we hurt all the time. So they stop asking us to go out places. Stop calling. Because in their mind we are disabled, therefore we spend all our time sleeping or trying to feel better. They have already made up their minds about us based on one word. Disabled.

They fail to see how hard we try to still have even a tiny fraction of the life we had before our diagnosis and symptoms started coming around uninvited.When they hear the word disabled most people assume that we sleep all day, don’t get anything done, never go anywhere. They never bother to ask us what our days are like, because what they know about disabilities is what the internet has made us seem like to the outside world. Lazy. Selfish. Attention seeking. Pain pill addicts.

It never occurs to them that if they bothered to even look up our illnesses that we can still do a lot, just not all at once. Hearing the word disabled used to describe someone, most people immediately think of someone in a wheelchair or someone with severe limitations in their movement and their lives. When they see someone like us who looks fine on the outside but still ‘claims’ to be disabled, they get this look on their face like we are horrible people because we are ‘lying’ about our illness. They don’t understand how can we be sick if we look fine on the outside. Society has made us ‘disabled people’ seem like we are just wanting money and free medical care and pain medications from the government. And its rare that someone actually tries to form their own opinion of us instead of believing the internet or the opinions of others that claim they know more about our diseases than they do. They believe the internet or other people because it is easier than getting to know us and trying to form their own opinions of us. It is easier to just believe what they are told rather than having to spend time with us when they ‘have better things to do’

We fight every day just to get out of bed while they take the little things for granted. Most people think that because life is the way it is for them that it will always stay that way. They never think of what would happen if all the things they were used to suddenly weren’t around anymore. They are used to going places all the time, feeling healthy, being able to go on long road trips, go to the bars, have a ‘normal life’ Have a relationship. Not have to worry about each and every minute of every day and how it will affect you and your ability to do even the simple things that they do without even thinking of it as a challenge. For them, that is just the way it is for them. They never think life would be any different.

What would they do if one day they woke up and they were suddenly sick with a chronic illness and their whole lives were about to change forever? What would they think if one day they suddenly could no longer go places without planning for every minute of it? Or having to start taking many medications? Of their friends who suddenly walk out of their lives after learning of their new life? Of feeling exhausted 24/7? Of needing a wheelchair? Of needing support to walk up a flight of stairs or even just a few steps? Of not being able to do even the simplest of things they used to do before they got sick?

They judge us each and every day. With their words. The looks. The whispers and the giggles as we struggle to walk upright or walk funny due to our pain. If they woke up one day and their whole life had changed, would they finally see that we are people too? We are not just The Disabled People.

We have feelings. We matter too. Just because we are different it should not make us ‘outcasts’ in the eyes of someone ‘normal’

We fight every single day just to get out of bed and put on a brave face. We do the best we can with what we have. There are people in my life that do not think of the hurtfulness of the words they use to describe me. I am not just the disabled girl they know. I am a person first. My illness is not who I am. It is a part of me, but it does not mean that I have to let it control me.

My name is Karley and I suffer from Chronic Illnesses. I am a person first and foremost. I am not the disabled girl. I have a name and I am more than my symptoms and illnesses. I refuse to let my illness control my life and how people see me. If they cannot see past the disabled parts of me, they have no right to be in my life anymore. I am a person. I have feelings. My illness is not who I am. I am stronger than my disabilities. I am doing the very best that I can with what I’ve got.

Instead of seeing me as disabled or having chronic illnesses that have no cure, try using my name instead. I am a human being. I have a name. or have you spent all of your time being so focused on the labels that surround me and my life that you don’t even know my name?

After writing this post, I made this. Because we do matter. We all do. No matter our limitations or illnesses.

What I Wish Someone Had Told Me About Grief

Today marks 1 year without my best friend Ty. We clicked right away upon meeting each other for the first time. Our mutual friend introduced us, knowing that having someone who understands the challenges that come with being diagnosed with a chronic or invisible illness can be a little easier to deal with if you have support.

In 2012 I was diagnosed with Interstitial Cystitis (IC), Endometriosis and PFD. She had EDS and POTS. 

This list is some things I wish someone had told me, what I’ve learned as well as some things from a few other contributors.

1. No matter how prepared you think you are for a death, you can never be fully prepared for the loss and the grief.
2. You can plan for death, but death does not always comply with our wishes or plans.
3. Dying is not like you see on TV or in the movies.  It is not peaceful or prepared.  You may not have a spiritual or meaningful moment . . . It’s too real
4. There will be pressure from others to move on, even minutes or hours after a death, and this can lead to regrets or resentment.
5. Death is not an emergency – there is always time to step back and take a moment to say goodbye
6. Death and grief make people uncomfortable, so be prepared for awkward encounters.
7. You will plan the funeral while in a haze.  If you aren’t happy with the funeral you had, have another memorial service later.
8. When people offer support, take them up on it.
9. People will bring you food because they don’t know what else to do. Don’t feel bad throwing it away.
10. People will say stupid, hurtful things without even realizing it.
11. People will tell you things that aren’t true about your grief.
12. Death brings out the best and the worst in families, so be prepared.
13. There is no such thing as closure.
14. There is no timeline for grieving. You can’t rush it. You will grieve, in some form, forever.
15. There will always be regrets. No matter how much time you had, you’ll always want more.
16. Guilt is a normal part of grief.
17. Anger is normal part of grief.
18. The pain of a loss is a reflection of love, but you never regret loving as hard as you can.
19. Grief can make you question your faith.
20. Grief doesn’t come in 5 neat stages. Grief is messy and confusing
21. Grief makes you feel like you are going crazy.
22. Grief can make you question your life, your purpose, and your goals. And that isn’t always a bad thing.
23. We all grieve differently, which can create strain and confusion between family members and friends.
24. However badly you think it is going to hurt, it is going to be a million times worse.
25. You may find comfort in very unexpected places.
26. The last 24 hours of their lives will replay over and over in your mind.
27. It’s sometimes necessary to seek out new ways to grieve on your own, find new guidance if the people who are supposed to be supportive simply haven’t learned how.
28. You grieve your past, present, and future with that person.
29. You dread each anniversary, birthday, occasion without that person.
30. They say the first year is hardest; but in reality, its all hard. First anniversary, first birthday, first time going to a place you shared without them.

Is there something you would add to the list that isn’t already on the list? Let me know in the comments!