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.
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
According to the Mayo Clinic, Insomnia is a common sleep disorder that can make it hard to fall asleep, hard to stay asleep or cause you to wake up too early and unable to get back to sleep. You may still feel tired when you wake up.
There are three types of Insomnia. Acute, Transient, and Chronic Insomnia:
Acute Insomnia: Can last up to one month and is commonly referred to as “adjustment insomnia.” This type of Insomnia often occurs due to acute situational stress. Once the stressor is no longer present or the individual adapts to the stressor, it typically resolves.
Transient Insomnia: Last for less than one week, and is usually triggered by another disorder, changes in the sleep environment, stress, or depression.
Chronic Insomnia: This one is the hardest. It lasts for more than a month and is sometimes associated with medical and psychiatric conditions. Usually, this occurs in patients with an underlying risk of Insomnia.
While the definitions focus on the sleeping patterns of those who have Insomnia, it does not touch on what it is like to live with Insomnia. Because Insomnia is much more than just not being able to fall asleep.
It can make one’s quality of life very difficult. A lack of sleep can make concentrating on even the simplest of tasks hard to do. You can develop “brain fog,” irritability, depression, or anxiety. Remembering things becomes more difficult as well. Living with Insomnia can make you exhausted in a way that no one understands, no matter how hard you try to put what you’re living into words. You try to rest, but you never feel like you’ve got any. People tell you to try yoga, eat differently, turn off all lights (cell phones, TVs, have room silent,) but it still doesn’t make a difference. Sometimes, sleeping medications help and you think, “Great! I will be able to feel like a person again!” and then they stop working after a month or two and you’re right back where you started. You feel physically, mentally, and emotionally exhausted. That is Insomnia.
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.
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.
Please be patient with me. This post may be jumbled and hard to follow, but, for the first time in a VERY long time, I’m reaching out to all of you. Usually, I write to help those who need it. Either by writing a topic one of you have requested, or something I feel might be what you need to hear.
This has hit me hard. It’s taken me this long to even begin talking about it, even with those I trust completely.
I recently found out my Grandma, who pretty much raised me, has 3-6 months left to live and they aren’t doing any treatments again. I know I’ve had her for way longer than most I know that have had cancer, but I’m not ready to lose her 😭
With everything going on these last few days, I feel like I’m losing my mind. BUT, I’m still standing. I’ve got an amazing support system of my boyfriend and his family; as well as support from those in my family, which I didn’t feel like I had before. I did. I know that. I guess I just didn’t feel like they’d want to ‘deal with me” and all my issues. Stupid, I know. They’ve told me they are always here for me and that I shouldn’t worry that they don’t support me, because they do.I’ve been through so much in my 25 years of life. Unimaginable, horrible things. I’ve also been through some things that, at first, shattered me emotionally, mentally, even physically. Some days I didn’t think I could go on. Didn’t want to. But I did. I managed to pick myself up, and keep moving forward.
Eventually, I even began sharing my story through blogging, with the hope that maybe what I had to say could help someone else, even just for a minute. The responses came slow at first, but now almost 8 years later, I’m still getting emails, messages, comments, about how my writing, my blog, has helped so many. That’s why I do it. NOT for fame. NOT for money. NOT to be ‘trending or popular’. Because all I’ve ever wanted is to help others.
Now is where I admit to all of you, I’m struggling badly with this and could use all the support and love I can get to help me through this.
A message, a comment, a silly image to make me laugh. Anything to help me deal with this.
I’m one of those people who always put others first, who hates asking for help; but I need your help. I need support to get me through this. So here I am. Saying please help me. Please.
Day 11: Why do you believe you have this illness? Bad luck, a higher power, karma, or something else?
Personally, I believe that by getting sick and all that comes with it, is to strengthen me. To force me to reach out to others. To believe in myself again.
Ask my family and friends, and their answers are all the complete opposite. My family basically has the idea that ‘my choices’ made me sick. That because I moved back here the day of my 18th birthday, stopped going to church, married someone they didn’t approve of, and generally didn’t continue with the ‘right ways’ of life they believe in, that’s why I’m sick.
This is something I’ve struggled with for years, I still struggle with this every single day. When my Grandma got diagnosed with breast cancer 6 years ago, she was doing everything right, eating healthy, natural remedies etc. But she still got sick and she is still going to die. Recently my mom got diagnosed with Chrohns Disease. In both those instances, it was ‘just what happened.’ not that there choices and actions made them sick.
I struggle to be the bigger person, to be there for them if they need me without letting my feelings get in the way of our relationship.
It took a few years, but one day it hit me. All the time and energy I was spending just to try and get them to believe me, to see I’m not faking or just wanting attention, was doing no good. I was angry that they couldn’t or wouldn’t understand. But all the time I spent being angry and hurt damaged some of the time I have had with them. So now, I just try and be as ‘normal’ as possible with them and I avoid talking about my illnesses. I just try to keep in contact with them the best I can.
My sister recently moved here for college and I feel so blessed to have the chance to finally have the sister relationship I never had the chance to have before.
Long story short, when I was 5 my dad married my step mom. When I was 10 they sent me a state away with her parents to be raised until I graduated. At the time I couldn’t see how that was the best thing they could have done. All I could see is after 5 years they just didn’t want me anymore.
My little sister that is here for college, she was 3 when I moved away. And as much as I called and spent time talking with her and my other 3 siblings, it wasn’t the same.
I moved back with them right before my senior year of high school. I spent that year doing the best I could to form a relationship with my siblings.
The day I turned 18, they packed me up and drove me back here. Once again, trying to have a relationship just by occasional phone calls and texting whenever they actually got cell service in the mountains where they live, it wasn’t the same.
We now spend most of the day sending Snapchat back and forth, texting, and two sister outings so far. The first was a week ago. We went to the movies. Tonight, we attempted to go ice skating after eating at Pizza Pie Cafe.
Let me tell you, I trip and fall on flat ground, with nothing but air in my way 🤣. I only fell once and I’m very proud of that fact. She just made it look beyond easy, skating loop and after loop while I had to take continuous breaks to breathe and rest my aching feet.
But I loved every minute of it. I can’t wait to see what we do next 🥰😂
Day 10: What little things makes your life easier?
There are so many little things that make my life easier with 3 incurable but non fatal chronic illnesses, but for now, I just want to share the two things that have helped above all else.
When I first began my ‘journey’ to find answers as to why I was suddenly so sick I couldn’t even get out of bed, I began blogging as a way to work through all the emotions I was feeling, as well as to maybe find others in my same situation. Best decision I made, although a uncomfortable one at first. I was and am a huge writer, and I have dozens of books filled with my words. But I had never up till that point shared the details of my personal life online.
I knew I had to do something to help me deal with everything that was happening. I couldn’t keep it bottled up inside and hope to come out unscarred emotionally.
So I started my blog, and the responses, while slow at first, rapidly became more and more. Others sharing their stories, stories of others they know or heard about, opinions and questions all for them, these strangers, to do what they could to help me find answers.
It still makes me emotional when I think about it. I never would have thought perfect strangers would actually try and help me. But I’m beyond glad they did. It helped me find answers, but most of all, it helped me deal with all I was feeling and having someone who’s there for you, even if they don’t have any sort of Chronic illness, is such a blessing. Someone to remind you that you are human. That your emotions and feelings are valid and natural.
Some of the best friends I have ever known I’ve never met face to face. Endless video chats and emails, yes.
I have a HUGE ‘unbiological family’ scattered all over the world, not just the US. Sharing my story was the best decision I have ever made. It forced me out of my comfort zone, to be vulnerable, to reach out to the nameless people online for support and answers.
Now, almost 7 years later, I’m still receiving emails from people asking how I’m doing and if there’s anything they can do to help. Even more shocking, at least from my perspective, I still receive countless emails, chats, phone calls from my followers and people who came across my blog one way or another telling me how much my writing has helped them. How they hope I never stop writing.
I have always loved to write, even as a young child. But it never occurred to me that my writing was actually going to help others. That by putting words on paper, (or in my case, online) I could inspire someone I don’t even know.
I always thought there was never going to be anything good about getting sick, getting on disability, unable to work, losing countless friends and family due to my illnesses and all that comes with it. But I’m so proud to say I was wrong.
You may have come across a page on my blog called Quotes By Me. After my ‘Journey’ began and I had to fill up every single day with anything just to prevent me from going crazy. I began making custom quotes, at first just ones I love. Then some for different situations (Dealing with life, loss, friendship, etc.) I began receiving requests for a specific quote someone wanted to see me make for them.
That has been an amazing idea that I wanted to see if I could push myself further. So I then began to make Spoonie Thoughts And Advice, Movie Quotes, and Song Lyric quotes. I am still in the process of adding more catagories, as well as adding them to my blog.
Keep checking back for new content in each category. Please don’t hesitate to contact me if you have something you’d like me to make, or even if you just need to rant and I listen without judgement. I only give advice if someone asks for it. Otherwise I just listen.
My contact information can be found on my ‘About Us‘ page under Karley Kay. My email and Facebook are usually the ones most people use to reach out to me.
If you reach out to me, I will always reach back to you. You’re not alone. You matter. Always. Don’t ever let someone tell you differently. You got this. I believe in you.
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.
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.
No matter how prepared you think you are for a death, you can never be fully prepared for the loss and the grief.
You can plan for death, but death does not always comply with our wishes or plans.
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
There will be pressure from others to move on, even minutes or hours after a death, and this can lead to regrets or resentment.
Death is not an emergency – there is always time to step back and take a moment to say goodbye
Death and grief make people uncomfortable, so be prepared for awkward encounters.
You will plan the funeral while in a haze. If you aren’t happy with the funeral you had, have another memorial service later.
When people offer support, take them up on it.
People will bring you food because they don’t know what else to do. Don’t feel bad throwing it away.
People will say stupid, hurtful things without even realizing it.
People will tell you things that aren’t true about your grief.
Death brings out the best and the worst in families, so be prepared.
There is no such thing as closure.
There is no timeline for grieving. You can’t rush it. You will grieve, in some form, forever.
There will always be regrets. No matter how much time you had, you’ll always want more.
Guilt is a normal part of grief.
Anger is normal part of grief.
The pain of a loss is a reflection of love, but you never regret loving as hard as you can.
Grief can make you question your faith.
Grief doesn’t come in 5 neat stages. Grief is messy and confusing
Grief makes you feel like you are going crazy.
Grief can make you question your life, your purpose, and your goals. And that isn’t always a bad thing.
We all grieve differently, which can create strain and confusion between family members and friends.
However badly you think it is going to hurt, it is going to be a million times worse.
You may find comfort in very unexpected places.
The last 24 hours of their lives will replay over and over in your mind.
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.
You grieve your past, present, and future with that person.
You dread each anniversary, birthday, occasion without that person.
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!
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.
The Spoonie Sanctuary 