A Day In The Life With Chronic Pain · Awareness · Chronic Illness · Chronic Pain · Expression · Health · Inspiration · Invisible Illness · Personal · Truth · Writing

You Are NOT The Enemy!

Julie, from Chronic Illness Bloggers, shared this in one of our weekly emails, which I LOVE seeing every week 🙂 And I just had to share it

guest post by Kerry @ Chronically Zen

When I was first diagnosed, the battle lines were clear: it was me against Crohn’s disease. Crohn’s disease had wrecked my health and my plans for the future. It was not going to win.

But over time, something else also became clear. My Crohn’s disease, my health problems made things hard on other people. The first few years, my brother was my caregiver. He took me to the hospital, helped me recover from surgeries, and listened to me when I was terrified of what my future would be. All the time, he was covering up his own battle with OCD, which I didn’t learn about until years later.

My illness also inconvenienced my friends and my co-workers. I could mostly be relied upon, but they never knew when my Crohn’s (or an extraintestinal complication or drug side effect or infection) would sideline me. Plans had to be cancelled; project deadlines slipped. People had to do more to make up for what I couldn’t do.

So the battle lines blurred. Instead of being mad at Crohn’s disease, I was mad at myself. I was unreliable. I was letting people down. I was making life harder on my loved ones.

Sound familiar? So often, those of us with chronic illness forget who the enemy is. The enemy is our illness. We, unfortunately, are the warriors and the battleground.

When you slip and begin to beat yourself up, remember:

You are doing the best you can. Even if you follow every instruction from the doctor and take every treatment, you will still have bad days. Do your best on the good days, and give yourself a break on the bad.

The people who love you know this. Your loved ones want what is best for you. They want you to take care of yourself, and, if you can’t do that, they want to help.

You are not responsible for how other people feel. Are your friends disappointed when you have to cancel plans? Sure. Is your spouse stressed out because you have to quit your job? Absolutely. But this isn’t your fault. It’s the fault of the illness. (I struggle with this myself.)

That’s all that matters. Whispering co-workers? Staring strangers in the store? Even family members who are not compassionate and blame you for your illness? They don’t matter. You, the people who truly love and care for you, your medical team: this is who matters. Don’t let anyone else make you feel bad for what you cannot control.

Your health is a battle, every day, and the war is a long, hard slog. Don’t forget who the enemy is. And don’t forget the ultimate objective: a full life despite it all.

image of shoes with quote: "As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed." Vincent Van Gogh

Kerry @ Chronically Zen
http://chronicallyzen.net
Diagnosed with Crohn’s disease over 20 years ago, Kerry has been through all the ups and downs of chronic illness. She lives in the South with her awesome hubby and her escape-artist puppy. She adores the Avett Brothers, coloring, and cooking competition shows. Currently, her favorite word is sanguine.

A Day In The Life With Chronic Pain · Autoimmune · Awareness · Chronic Fatigue Syndrome · Chronic Illness · Chronic Pain · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · Mental Illness · Personal · Writing

The Words We Use-Re-post request!

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 s0me 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 for a little over four 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. Of taking many medications. Of feeling exhausted 24/7. Of needing a wheelchair. Of needing support to walk up a flight of stairs. 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 to 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?

Autoimmune · Awareness · Chronic Fatigue Syndrome · Chronic Illness · Chronic Pain · Depression · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · Links · Social Media · Writing

Tips From Chronic Illness Bloggers

I have been a member of Chronic Illness Bloggers for quite a while now, and I am just amazed at how much I am learning, and getting to know more of the Chronic Illness Bloggers that are also members.

Each week, or sometimes more often, we are sent emails that detail all the things that have happened that week, and I saw this and I just had to share with all of you! At first when I started blogging, I figured that just my family and a few friends would follow my blog, and that was okay. Since becoming a Chronic Illness Blogger, my stats and followers have skyrocketed using these tips which you can find HERE, and from having the amazing chance to participate in some amazing opportunities and share what I have learned. If you are a Chronic Illness Blogger who would like to have this chance, you can find out more HERE.

 

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Stretched Too Thin….?

So I am going back and forth trying to decide if I want to take on another blog and have it focus on the different diseases that people have and how it effects them and those in their lives. I  have this blog, obviously, but I would like to make a new one that focuses completely on other diseases and illnesses besides mine.

I just finished reading a book called You’re Not You by Michelle Wildgen. And if the book wasn’t amazing enough, there was a movie made in 2014. You can see the trailer HERE.


Bec is adrift. It’s the summer before her junior year in college. She’s sleeping with a married professor, losing interest in her classes, and equivocating about her career. She takes a job caring for Kate, a thirty-six-year-old woman who has been immobilized by ALS.

As it turns out, before the disease Kate was a stylish and commanding woman, an advertising executive and an accomplished chef. Now, as she and Bec spend long days together, Bec begins to absorb Kate’s sophistication and her sensuality, cooking for her, sharing her secrets, and gradually beginning to live her own life with a boldness informed by Kate’s influence. The more intense her commitment to Kate, the further Bec strays from the complacency of her college life. And when Kate’s marriage veers into dangerous territory, Bec will have to choose between the values of her old life and the allure of an entirely new one.

My husband is worried I am pushing myself too hard, which I probably am, but this is something I would love to do, either on my normal blog or create a new one.

I want to learn more about other illnesses and help others any way that I can because I understand what it’s like to feel like you need t0 be able to handle your illness yourself.

I understand how you spend months, even years being told that your illness is all in your head and as much as you try to convince others that it’s not, the more you start wondering if what they said is true, maybe it was all in your head.

I understand how diagnosis changes your life in more ways than get more most people even realize, especially if you have in invisible illness and you look fine on the outside.

I know how validating it is the moment the doctor comes in and says you have a Chronic/Invisible/Fatal illness. You sit there, your hands fidgeting, your heart beating so fast you think you might pass out. You want to scream at them to tell you what the tests said already, not try and make small talk first.

You are so relieved that your illness is not in your head, that you are not crazy, there actually was something wrong with you this whole time and if you would have listened to the people who told you it was probably nothing and that they wouldn’t bother going to the doctor for something so minor, you may not have caught this fast enough to help stop the progression of the symptoms. You (Well, I know I did) feel a little guilty satisfaction and smug when you tell those who doubted you that you do have something wrong with you and that they were wrong.

I know what it feels like when the relief that it wasn’t in your head goes away. Finally, I have a diagnosis and it wasn’t in my head after all! Then, sometime later after the doctor leaves and you go back home, you crash. Hard. You’re whole world has changed. It suddenly hits you that nothing will ever be the same again. You spend hours imagining how life would be from now on and how you imagine handling it. No Scenario can even come close to what really happens when you get sick.

When you get sick, everyone always says “I am always here for you.” but in my experience they say that but always end up walking away the moment you start struggling with your illness and you cannot go places or do the things you used to do. They loved hanging out with you and constantly making plans as the person you were before. They are always there for you when you are healthy and can keep up. They aren’t there for you when you get sick because you cannot go places and do the things you used to do. You change; physically and emotionally. You become a different version of you. You have to stop going the pace you were before. You’ve had to take a step back from things you love.

And….end ramble 😐

But my husband is probably right. I currently have 13 social media sites just for my blog that I try to keep up with, I have two Facebook pages that I created, my personal Facebook, Beautiful Tarnished Spoonies Facebook Group I made, and I work for Chronic Illness Bloggers.
I want to know what you all think. Comment below or reach me on any of my Social Media Sites! I will take some more time to think about it, but do you think it is  a good idea?
Awareness · Chronic Illness · Chronic Pain · Depression · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · Links · Mental Illness · Random · Social Media Sites · Writing

Beautifully Tarnished Spoonies

I know I posted about this before, but I am updating it to be more current. Most of you know that I have started a support group for Spoonies on Facebook. When I started it, it was called One Spoon At A Time. After finding out there is a group with the same name on Facebook, me and my amazing group have decided to change the name to Beautifully Tarnished Spoonies, thanks to my friend Liz. Maybe Facebook used to have a feature where if you tried naming your group or page something that was already on Facebook, you had to name it something different, but it doesn’t seem to be the case anymore.

Feel free to check it out, join, share, and of course add friends!!!

I will be editing and adding to this post for a while as my support group slowly gets bigger.

If you have any questions or just want to talk to someone,  you can contact me at any of my Social Media Sites or on my Contact Me page.

A Day In The Life With Chronic Pain · Awareness · Chronic Fatigue Syndrome · Chronic Illness · Chronic Pain · Depression · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · Personal · Writing

The Bright Side Of Disability…?

When most people are diagnosed with a Chronic Illness, me included, forget to try and find the small sliver of hope and try and see the good things about having a Chronic Illness. I know, you’re thinking how can there be anything at all that is good since being diagnosed with a Chronic Illness and having your whole world spin out of control?! 

I admit, it has taken me years to finally do the best I can to see the good things that have come into my life and the lessons I have learned since being diagnosed despite all the new and difficult changes I had to make in order to deal with my illness better.

Here are a few of the things I have noticed since being diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression four years ago. There are so many things I have noticed since being diagnosed that this post would end up being almost as long as a book, so here are just a few of the things I have noticed most of all.

You are grateful for all of the little things in your life. You know how precious time is and you don’t waste it. You are more compassionate to others. You recognize the beauty in the little things. And most of all, I have learned that you are never ever alone. You will always have the Spoonie Community to help you. Reach out, there are so many amazing resources and support options out there, you just have to reach out. You never know how reaching out can help you as well as others. Please reach out, you never know how someone’s life will be affected by you and your story. All we want is to never have to deal with it alone, and thanks to the amazing support options available, we should never have to.


In my newly created group One Spoon At A Time, I asked this very question and here are some of the responses I got shortly after posting in the group.

Celina-Because if my food sensitivities and diet restrictions I’ve lost about 50lbs.

Elaine –Saving money by not going out as often.

Emily- I don’t have to deal with boy-drama because I can’t date 

Karley- I’ve gotten closer with my grandma and spending a lot more time with my husband

Ty-I’ve become more humble and understanding of other’s limitations.

 Janelle-I’ve learned to become patient. I’ve been overly active all of my life. I used to feel guilty for calling in sick to work. I also felt guilty for laying on the couch and watching tv during the day when I was sick. I always felt like I should clean and do laundry, so I usually did. I’ve learned with IC, PFD, and clitorodynia that when I’m flaring it’s OKAY to lay around watching tv. The cleanliness of my house is no longer my top priority, my health is.

 Kristy- All the time I want with my grandson.

MaryJo- I surely have learned not to judge as much you never know what a person has gone through

Cher-Genuine Friendships.

Save

30 Day Challenge · Chronic Fatigue Syndrome · Chronic Illness · Chronic Pain · Depression · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · Random · Writing

30 Day Challenge: Day 30

Day 30- Your plans for the next 30 days

Most people when they try and plan their next 30 days make plans that can easily be changed or added in. They are confident in their decisions and if they don’t get everything done, they can still smile and say they tried.

Me? I can plan my whole life out, step by step and promise myself that this time I will do all of the goals on my list, that I will finally get something meaningful done in my life, something I can be proud to say I did. As great as that sounds, it is so far from realistic, it doesn’t even seem like I would have the energy to write down the ideas, much less actually do them.

But each year, there I am again, convinced that this year will be the year everything will change for me. And I have made a little progress in the last four years. Not enough that an outsider would see that there was anything different in my life. But those close to me notice, and it is so nice to see them smile and cheer me on, telling me to not give up and even if I make 1% more improvements in my life, that I am making a difference, I am trying. That moving forward even one step at a time is progress.

Every day when a thought comes to mind of something I need to do or people I need to call, I write it down and every morning when I wake up, there is the list sitting on my closed computer of the things I need to do. I started doing that because in order to open my computer and use it, I would need to look at the paper and put it somewhere else before I could use my computer. And it has helped a lot more than I thought it would. I never get everything on the list done in one day, but each day I try and do at least one thing on the list. Just one thing. I love the feeling of knowing I am making progress and doing the best I can with all the problems in my life.

I also leave my medications on my computer every night so that I remember to take them. I used to be horrible when it came to taking my meds every day. Now seeing it first thing in the morning, I remember to take it. It’s habit now and I never miss a day of medications because of my awesomeness in making sure the list and meds are on my computer so they are the first things I do when I get up. Take my pill, read over my list for the day, and slowly start working my way through the list.

So what are my plans for the next 30 days? To survive. To push myself just a little bit farther. To do just a little bit more. To believe in myself again.