I hate that my writing has taken a backseat to the extreme with everything going on. My writing used to be this amazing outlet and you would rarely find me without a notebook and pen every second. Now I’m struggling to even focus on the next few minutes, much less trying to plan for posts, or even just life in general.
So, I’m apologizing in advance if this post is way below the line for my previous posts. I’m trying. Please be patient with me.
This was originally posted about 3 year ago; and while it makes me sad to think about this night as she passed away 2 years ago, it did bring a smile to my face. I’d honestly forgotten about this.
I had an experience tonight that really got to me, I got angry and upset and I wanted to yell.
But then I realized something. I have to be the best I can be. I have to be stronger than the words that are being thrown at me. I have to be the example of kindness. I have to try and not let words hurt me. I have to realize that I don’t know the reason behind the hurtful words, that I don’t know why they say what they do. Its MY words and MY reactions that can make it better or worse. I have to worry about ME and as hard as it is, try and be a BETTER person and rise above it all.
Oh, I’m still upset, but I realized that was exactly how I DON’T want to be. I want to be happy. I want to help others, not belittle or yell at them. I don’t want to say hurtful things and ruin someone’s night. I don’t want to make anyone feel horrible. I want to make others feel even a little bit better and tonight, I did that.
I stepped in on a situation and helped a friend who needed it. I stood up for her. I made her feel better. And I did the best I could to make the situation even just a little better for her.
Tonight really put everything in prospective for me. I can’t change anyone, but I can be strong and rise above it all. No, I’m not saying its easy. Its never easy. But its the right thing to do.
As you know, I’ve once again gone MIA for a while, 😬 BUT I’m back and ready to answer the questions from my previous post “Baby Steps…And A Challenge.”
As this list of questions has over 200+ to answer, I’m only going to answer a few at a time.
Ready? Let’s go!
What is the funniest name you have actually heard used in the real world? Cheri Pitt
What is the sexiest name you can imagine?
What is the least sexy name you have ever heard? Bert
What sport would be the funniest to add a mandatory amount of alcohol to? Tennis
If you could replace all of the grass in the world with something else, what would it be? Squishmallows because of all the million stuffed animals I have, I instantly fell in love with the adorableness of them, as well as the material they are made from. (Don’t worry, I didn’t bring it up to not show you)
If you had to choose one animal to help you win a fight, which animal would you choose?Cape Buffalo “if an individual (or its calf) is threatened or wounded, they become the incarnation of their nickname: Black Death.”
If you could morph two animals to make one super animal, what two animals would you choose? Why? I have always loved the story of the tortoise and the hair, still one of my favorites even now in my mid 20s. Searching for a picture to hoping to explain it better, I found this and it was too good and cute not to add 😍
What movie would be greatly improved if it was made into a musical? I think The Ghost And Mr Chicken would be hilarious as a musical; although I’m not sure it would make much sense the more I think about it 😂
If you could choose one musical artist to marry but could never listen to their music again, who would it be? I honestly am coming up blank on this question. I am addicted to music, I even used to sleep with my radio on and tuned to country music and that’s how I would get to sleep every night. But at the same time, while I love music and lyrics, I don’t really know much about certain artists and their lives outside of the music world. The music matters to me, not necessarily what goes on in their lives outside of their music; and I know how that sounds, I do. But it’s the truth.
If your five-year-old self suddenly found themselves inhabiting your current body, what would your five-year-old self do first? Probably end up screaming bloody murder, honestly! I know what you must be thinking “She’s really lost her marbles or is avoiding the real answer for whatever reason. Here’s the thing-I’m not crazy or avoiding the question. My every day life is someone else’s worst nightmare. My pain tolerance is low, chronic pain has reaked havoc on my body for years. As a kid, my tolerance was even lower than it is now at almost 26 years old.
What is something that everyone looks stupid doing? Biting their top lip 🤣
Have you ever sent a text message to the wrong person? Way too many times 🤦
What are three items you could buy together at the grocery store to make the cashier laugh? Lube, Summer sausage and Enima kit 😬
Have you ever caught something on fire while you were cooking? Thankfully, no.
What is something that is really popular now, but in 5 years everyone will look back on and be embarrassed by? Fidget spinners. In my opinion, there are a million other things I would try for things like anxiety or boredom before I’d use something like that but I know they are very popular for a variety of reasons.
Since being diagnosed with interstitial cystitis, endometriosis and pelvic floor dysfunction, 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 make 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 and surgeries. They 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 sometimes it feels like if you are not in danger of actually dying, people don’t feel the need to 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 it is most likely going to “drag on” forever. From my experience, it can be hard to get people to support you if you are going to live with your disease forever and if there is no cure.
People with chronic illness often face a lifetime of pain, exhaustion and disability. A lifetime of people telling them to get over it and they they are too depressing to be around, along with failing to meet everyone’s expectations. It is also hurtful how family and friends can’t seem to understand how we can be fine one minute and then the next we are curled up on 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 for what is “wrong” with you, it makes it much easier to treat, or at least manage your symptoms and pain. But along with the names of your illnesses and symptoms also comes judgment; 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 on the market with amazing reviews online for being natural, articles by people who have “cured themselves completely using ____,” or how thinking positive and talking about your feelings you can convince your body you don’t have an illness and can therefore “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 lived with my illnesses for five years. But in that time I have come across others in support groups and online forums who sometimes say they wish they had a condition people were more familiar with or took more seriously. Most chronic illnesses have no cures, only treatments, and some people 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 to adequately explain how difficult it is to live with an illness that no one believes is real. For people to not understand how you can look fine and be smiling on the outside, but be hurting on the inside. For people to not 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 many 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. It’s hard when people have stopped seeing us as a person, but now see us as our illness or our symptoms. It is hurtful for many of us. We just want some understanding. Some support to know we are not alone. I could really use some support, as I am going through this difficult part of my life. 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?
For those of us with chronic illnesses, many people come to the conclusion that we are different, and we will never be like them because we have a different life then they do. Many people assume we will never want to hang out because we hurt all the time. So they stop asking us to go out places. They stop calling.
We fight every day just to get out of bed, while many others take the little things for granted. Many people think that because life is the way it is for them, 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 bars, have a “normal life,” have a relationship. Not have to worry about every minute of every day and how it will affect you and your ability to do even the simple things.
My name is Karley and I live with chronic illness. I am a person first and foremost. I have a name, and I am more than my symptoms. I refuse to let my illness control my life and how people see me. I am doing the very best that I can with what I’ve got.
***Please don’t hesitate to contact me about anything I haven’t given up on you even though with how little I’ve blogged in the last few months, you probably think I have. But here’s the thing- you ARE important and you DO matter. Every single one of you.***
I know and am ashamed about how much my postings have gone down hill.
Please be patient with me and know, I AM BACK . I WILL continue to blog , it may just take me a while to get back into the rythum of writing again so please be patient with me.
One of the many reasons I stopped blogging is on April 26th, 2020; my Grandma passed away (if you’d like to know more, just let me know) and I feel like I’m being ripped apart. I have to fight every single day to just get through without the emotional what I call “Word Vomit’ where I basically blurt out everything without thinking, and that usually ends up with me crying. I’m not talking about the normal crying; I mean full body shakes, my nose runs like a river, and then every part of me starts to hurt from the shaking, the crying. The toll crying takes on me is insane. I usually end up needing a nap after because I don’t open myself up to many people.
I tell myself that I can handle it. That the severe exhaustion, the snot bubbles (not really, but go with it) and bawling my eyes out is nothing. That I can handle it myself and don’t have to drag someone into the hell that is my life.
I’m going to stop right here even though I have more to say and because I’m beyond exhausted mentally and physically and I have a date with my bed. But please keep checking back and I will post more later.
.One day at a time. Stay strong and safe, my friends ❤️
Before I even begin writing this post, I’d just like to say thanks to all of you who have been reaching out to me and who continue reading my blog, (despite the spotty postings) lifting me up through this heartbreaking time in my life. It means the world ❤️and I ask you to please be patient with me. I know this article may seem very jumbled and way longer compared to previous posts
Hey, internet family! I know I have been MIA for the last few months (that’s putting it lightly 😬) but I’m doing my best to get back into my writing in general, as well as on here.
I recently got an email from a long time follower, who challenged me (as well as told me that they’ve been missing my blog posts and just wanted to check in with me to make sure I’m doing okay) to start writing again, and then sent me this link to a different bloggers article that had a huge list of questions to answer.
They told me that I need to go easier on myself as I’m dealing with a whole heck of a lot right now in my personal life. (Which, I admit, is the understatement of the year 🥺) and that if, and when, I decide to start writing again, to take baby steps and not force myself into rushing back to writing just because I worry about losing traffic on here because my postings have been spotty at best lately.
I want to pause right here to say that when I originally started blogging, my goal wasn’t to become ‘popular’ or to earn money writing.
I started blogging for a few reasons; (but I won’t get into that right now as this is already a long post 😂; but let me know if that’s something you would like to find out about)
She went on to say that it probably wouldn’t be easy to just jump back into writing, so she said maybe the first step could be just answering questions on my blog and slowly work my way back up.
I think that is a great idea! Baby steps.
While I currently have the list she sent me in the email, I thought I’d ask if any of you have a question or two in mind.
Let me know down in the comments or you can reach me HERE. Facebook is the best way to reach me as I can respond a lot faster.
I will leave this post up for a week and please feel free to ask me anything you’d like to know 😊
I’m excited to see what the responses are from all of you 😊. In a week, if I haven’t received any responses, I’ll be filling out the questions from the article I linked above. There are over 300 questions though; so I will be answering them a handful at a time.
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.
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?
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.
I know too well how it feels that no one believes you are sick because you look ‘normal’
You think that because the tests came back normal, that I must be making it all up, right?
The next round of tests showed just how messed up my body is, but even with proof, you still deny what is right in front of you.
If I take the two minutes to do my makeup and put on normal clothes, it does not mean that I am ‘cured’ or that I lied about my illness. It means I am trying to be stronger than the monster that is my body.
This has not been an easy journey for me. And yet here I am still standing strong in the face of the worst time of my life without the support of you.
Without you, I am still standing. Without you, I still manage to be okay.
You don’t have to believe me, I know the truth. Those in my life who have stepped up at this time in my life are those who truly matter to me.
Day 17: How would things be different if you weren’t ill?
To be honest, I’m not even sure exactly why this post has been so hard for me to write. I’ve been thinking about it for the last four days and therefore I’m again behind in my posting please be patient with me.
Day 16: What is your favorite inspirational quote?
There are many quotes I love that have helped in many situations. I’ve even begun to make my own.
Two of my favorite quotes are ‘Its funny how day by day nothing changes; but when you look back, everything has changed.” And “A semicolon is used when the author could have ended the sentence; but chose not too. The author is you and the story is your life.”