Late Night Thoughts

Since being diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Epilepsy, along with PTSD, 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 lived with my illnesses for a little over a decade now. Wow. 10 years. 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

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 ❤😘

I Know…

I know you’re frustrated. I know you’re having a hard time believing things are going to get better. I know you want the pain to stop, you want the questions to stop, you want the self-doubt to stop. But you need to hold on a little longer.

You need to get through the day. Even if you don’t leave the house, even if you don’t shower, even if you don’t brush your teeth, at least make it through the day. Other people might think you’re lazy for cooping yourself up inside for hours on end, but you know better than them. You know you’re strong for making it through the day at all.

Some days aren’t meant to be productive. Some days aren’t meant to be jam-packed with activities. Some days are simply meant to be lived.

You need to live through today, even if you’re doing it from inside your bedroom.

You need to live through today, even if you don’t have the energy to move from your bed.

You need to live through today, even when you feel like you aren’t living at all.

No, you can’t lock yourself away in a cage forever, but today is not forever. Today is all you need to worry about right now. Get through today and the rest will come later.

That doesn’t mean you have permission to procrastinate. If you can muster up the courage to call a therapist, do it. If you can muster up the energy to return texts, do it. If you can muster up the strength to leave your house and get through the day, as usual, do it.

Your feelings are valid. Your mental health matters. Asking for help is a step toward the healing process, it’s a step toward feeling okay again.

But on the days when you don’t feel okay enough to function, as usual, don’t be too hard on yourself. Don’t call yourself a failure. Don’t assume there’s something wrong with you.

Thousands of people experience the same things you’ve been experiencing. You wouldn’t want them to give up on themselves so you shouldn’t give up on yourself either.

Keep going. Keep breathing. Keep living.

You might feel like you’re never going to stop making mistakes. You might feel like everyone you love is going to leave you eventually. You might feel like you have nothing to offer this world. But those are fears, they aren’t facts.

The little voice in the back of your head is a good liar. It’s good at convincing you your worst fears are true but you have to remember you are in charge of your own identity. Your worst moments don’t define you. Your baggage doesn’t define you. Your insecurities don’t have to hold you back forever.
No, you might not have the energy to do much more than eating breakfast today, but that’s a start. That’s a small stepping stone and with enough time, even the smallest stepping stones will lead you to someplace beautiful.

You are strong for making it through yesterday, so don’t you dare give up on yourself, because you can make it through today too.

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

Lessons My Chronic Pain Has Taught Me

I know what you’re probably thinking, “How can your Chronic pain/Illnesses teach you something?! Pain is pain, there’s nothing good about it!” And to be perfectly honest, I’ve struggled for years with trying to accept my illnesses. For years I let myself focus on the bad parts, the bad days, the medication overload, the sleepless nights due to pain. I couldn’t see that despite it all, my Chronic Pain has taught things about myself. Good things and bad.

These last few months, I’ve been dealing with some extremely hard personal challenges. Its been emotionally and physically exhausting. But I’m still doing my best to move forward.

Here are some lessons my chronic pain has taught me.

1. When I was first diagnosed with Interstitial Cystitisthen later, Endometriosis, PFD, and most recently Epilepsy, one of the first things I did was search out some support groups. My ‘family’ now is spread across the world and I haven’t met most of them in real life yet. But we stand together and support each other.
2. My pain has taught me how to listen to my body and learn my limits. In the early days of my ‘journey’ I tried to keep the pace I had before I got sick and more often than not I ended up in bed for days after.
3. There is a joke, but not a funny one, going around the Spoonie communities. “Want to know who truly cares about you? Get diagnosed with a Chronic Illness.” There are only a few people in my life but they have continued to lift me up and help me because they truly care.
4. My Chronic Pain has taught me to believe in myself again. Being confident in what I can and can’t do has helped to allow myself to believe I can do anything, I just have to be careful and usually spread out over a week or more. But I do get things done.
5. My illnesses have also made me want to learn all I can about my illnesses and others that people I know have. I know it may seem strange but learning about other illnesses is a kind of hobby for me.
6. Just because I could do some walking around and hanging out yesterday doesnt mean I can do the same tomorrow.
7. The person hardest on me is myself. I judge myself harshly, put myself down for the things I can’t do. I usually end up pushing myself too far because I want to try and have a life outside of my illnesses.
8. I’m learning its okay to ask for help.
9. I want to help others like me who suffer from Chronic Pain and Illness. I even am starting my own Chronic Pain Support Group online, so everyone can join and not have to miss out due to transportation or illness.
10. I think one of the hardest things my illnesses have taught me is how to be patient with others and not become annoyed when they find out I’m sick but look fine on the outside. They all give you ‘the look’ of disbelief and some even come right out and call me a liar. It hurts.
11. There are a lot of ignorant people out there who think they know me and my illnesses better than I do based off a 2 minute internet search.
12. I’m learning to take life one day at a time, sometimes an hour at a time. And thats okay.
13. My experiences are different than those of someone with the same illness. No two people have all the same symptoms.
14. There are many others who suffer from Chronic pain and Illness, as well as invisible illnesses. You are not alone. I am not alone.
15. Taking care of myself is not selfish. Its a necessity.
16. I’m much stronger than I give myself credit for. My illnesses take a lot from me mentally, emotionally and physically. But somehow I still manage to push forward each day.
17. I have to become my own doctor as I know my body better than anyone. I’ve spent hours researching to find different treatments and ways to make my life a little easier.
18. I no longer try and justify my illnesses to others. I’m sick and while I’m doing the best I can, I should never have to feel the need to prove how sick I am.
19. I can no longer do what I used to, but I just do my best to adapt and find a way to still have fun.
20. You have to be truthful: you have to be open with loved ones about your condition, pain and feelings. So then you don’t battle alone and everyone knows the score.

What have you learned through your own journey of Chronic Pain and Illness? Let us know in the comments. 

What I Wish People Knew About Chronic Pain

With it now being 2022, as hard as it is for me and those close to me to believe, this now marks 10 years of me dealing with chronic pain. 8 since my first official diagnosis of Interstitial Cystitis. Since then, I’ve also added Endometriosis,  PFD (Pelvic Floor Dysfunction) and Epilepsy to my diagnosis list.

As chronic pain patients, we deal with so much on a daily basis with our bodies basically hating us every moment of every day. And no matter how well meaning people can be, words and advice can do more harm than good. Here are my 20 things I wish people knew about Chronic pain.

1. Being unable to work is not the same as taking a vacation. There are so many days I’ll be stuck in bed due to the pain, brain fog, exhaustion and yet I still wish I could work because I spend way too much time feeling lazy and unmotivated. I do my best to get up and moving every day,  to do one small thing so I can feel productive. But some days all I can do is lay in bed and binge watch shows like Grey’s Anatomy (my current show for the second time).

2. Chronic pain is more than just pain. We may deal with anxiety, depression,  brain fog, limited body movement and more.

3.  We hate hearing phrases such as “it can’t be that bad.” Or “it could be worse.” I know for me personally,  when someone says something like this, I struggle with frustration because to me it feels like they don’t see my pain as valid.

4. Chronic fatigue is not the same as being tired. People may struggle to find the motivation or energy to do even simple things. I know for me, things like showering or even making my bed some days can be exhausting,  even if my body feels awake.

5. Pain levels can change from moment to moment. We can go from feeling as good as possible to being stuck in bed due to pain, exhaustion, joint pains and aches, etc. We have to take each day as it comes,  even if that means hour by hour.

6. Individuals with chronic illness have a greater risk of developing other conditions. Why? Because our immune systems can be wrecked due to our health.

7. Certain foods can affect pain levels. Especially since being diagnosed with Interstitial Cystitis,  I found this to be true. There is a special diet my doctor put me on when I got the diagnosis of all the foods that I should avoid (which some days feels like everything good). While some people can handle foods others can’t,  I’ve lately had to go through the list yet again and remove some other foods I used to be able to handle. So now I do my best to avoid foods that are acidic, or has a lot of preservatives

8. Our energy levels, like our pain levels, can change in an instant. We only have a certain number of “Spoons” When I got my first diagnosis, a friend of mine sent me The Spoon Theory, which has become a big part of my life when I try and explain how I can’t do the same things I did the day before because  “I was out of spoons”

9. We struggle to find a good doctor. So when we find a good one, we do everything we can to keep them. One thing I found out is most medical schools only offer a few hours of training in chronic pain management, unless they specialize in it.

10. We are not lazy. We do our best to still have some form of a “normal” life

11. We try to look our best. I know for me, when I feel like absolute crap, I like to wear earrings or do my makeup, which I know makes no sense 🤣. I use energy I don’t have to look better because it makes me feel better emotionally

12. We are not drug seekers. We want anything that will help with pain, even if it means surgery.

14. We can become super active on good days. When we feel good, we want to take advantage of feeling good and do things we weren’t able to do on previous days

13. We don’t always know how to manage our pain. No matter how long we’ve been dealing with pain, that doesn’t mean we know how to manage it as it can change day to day.

15. We don’t want you to stop inviting us out. We still like to know people want to hang out with us, even if we aren’t able to.

16. We don’t want your medical advice. When chronic pain patients talk about their pain, they are generally just looking for someone to listen and empathize. They are seeking connection and for someone to understand the hardships of what they’re going through. Chronic pain patients often feel as if they have exhausted all their options and that things may not get better. Implying that they just haven’t tried the right therapy yet may suggest to them that you feel you know their pain better than they do. Pain is also a very individual experience, so what worked for you or your friend may not work for them.

17. We often don’t have good quality of life. Sitting and laying down all day when we are pain can diminish our quality of life.

18. Chronic pain is more than skin deep. Many chronic pain conditions are invisible illnesses. Just because people look fine or even appear to be happy does not mean they are not suffering. Many chronic pain patients learn to hide their pain in order to get through the day.

19. Pain can make people feel guilty. When we get asked out to do something and our pain prevents us from accepting the invitation, we struggle with guilt.

20. Everything isn’t always about my illness, but it also kinda has to be. I wish things didn’t have to revolve around my illness, but when I’m living with this everyday I have to work around what I can and can’t do. It’s incredibly frustrating but why should I have to apologise for it? I wish it wasn’t this way but it is.

Patient

There’s only so many times you can say you’re in pain before people stop listening. After all, its Chronic. Never going away. Life long pain.

So when I stop complaining of my pain and make it sound like its no big deal, it doesn’t mean my pain is any less than normal. It doesn’t mean I don’t feel like I got run over by a truck or that my body isn’t on fire.

It just means I’m trying to be stronger. Trying to take it day by day. I don’t have another choice.

I’m still in pain. But I’m pushing through. I can do this. I have to.

And I’ll do it without complaining because I understand how annoying it can be.

It’ll be a lifelong journey and there’s only so many times I can say the same thing a million different ways.

Just please be patient with me. This isn’t easy.

If Mental Disorders Were Pictures: Insomnia

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.

If Mental Disorders Were Pictures: Anxiety

***I know each disorder is different for everyone, and some people may experience different symptoms. This is just me trying to write. I’m sorry if I offend anyone. I have decided to only do the disorders I know because I don’t want to try and explain something I don’t understand.

BUT feel free to contact me if you’d like to contribute, either anonymously or first name basis on any of the post topics above this one.

The easiest way to reach me is by texting me. And oh wow, I was not expecting this kind of response, from the article or the fact that I now have an ‘official’ phone number (Same as for my other 3 pages, Dangerously Normal Spoonie, Chronically Ill And Fabulous and of course, my Beaded Warr;or Jewelry page (208) 515-2722***

So I decided to start with something I sadly know a lot about. A lot of us do, I think.

“Anxiety is a feeling of fear, dread, and uneasiness. It might cause you to sweat, feel restless and tense, and have a rapid heartbeat. It can be a normal reaction to stress.”

Anxiety…the one thing that can knock you flat on your back in a split second. Or feel like a gut punch.

Anxiety…trust me when I tell you, the voices in your head that tell you that you don’t matter are lying to you.

You DO matter.  You ARE important. 

Anxiety…the uninvited guest. Comes in and makes himself at home.

Anxiety…is shaky hands, racing thoughts, making you question everything and everyone. A constant feeling of dread.

But trust me, whatever is going on,  you WILL get through it.

Reach out, you never know who may be touched by you ❤

Do you experience different symptoms? Do you have something to add? Comment below your thoughts