What’s in My Flare Kit
The chronic illness world has its own set of terms and meanings. One is a flare-up kit and/or a survival kit. We all know how bad days can be and when it happens you better be prepared.
Everyone’s flare kit is different and it’s about what works best for you. Items can be anything from your favorite movies and books to medications to what you wear and anything in between. My top items are my heated blanket, Motrin, comfy clothes, chargers, my kindle, my Roku and my phone. These might seem all over the place, but sometimes it is hard for me to move on those days and having all of these items next to me can really help.
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Rest And Recovery Means More Than Sleep
As chronic pain patients, we need extra sleep, often more than the average person, but so often “painsomnia” is what we get instead of sleep. This lack of ability to recover from a deep nights sleep only feeds further into the cycle of pain we are in and can often make us even worse. However, I’m going to set the sleep topic when it comes to resting and recovering aside for a moment and talk about an aspect most folks don’t think about when it comes to deep recovery.
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A Letter to Doctors
Dear Doctor,
I know I may not be a typical case for you. I may not have the symptoms that you know like the back of your own hand. I might have something that you didn’t touch on a lot in medical school.
Please don’t give up on me.
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Three Reminders For When Everyone Else Is "Moving On"
When you have a chronic illness, sometimes it can just seem like everyone around you is moving on with their lives while you’re just stuck in pain. This is a very real and very true experience for millions around the world who are crippled by chronic pain or a debilitating illness. When I find myself wanting to compare what I know to be true of my world with what seems to be true of someone else’s, I have to remind myself that what's happening on the outside doesn't tell the true story. We are made up of the changes taking place on the inside.
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From The Girl Whose Skin Is Too Sensitive
When you think of pain, most people think of a burn, a broken bone, or even a scrape. I, too, think of those as painful, but I find things like the shower pressure and goosebumps incredibly excruciating. The readers here might find it strange that I say that along with the people I talk with, but it is true and it is due to my Central Pain Syndrome. I am so overly sensitized that some of the very things everyone loves I despise.
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Quit Moaning, We're All Hurting
Let’s be honest: everyone experiences pain. For some of us, that pain comes and goes more fluidly than for others. Sometimes it’s emotional pain or the pain of regret. Others experience excruciating daily physical pain. And still for everyone, the fact remains: you often don’t remember with crystal clarity the pain you’re no longer living in.
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It's Time to End the Stigma on Invisible Illness and Mental Health
When you look at me, do you see a girl who is in constant pain 24/7? A girl who some days can’t get out of bed to use the bathroom because she feels like her entire body is on fire from the inside out?
When we walk down the street or go out in public and come across someone who is rude, we as a society don’t think about how they might be going through something. I realized that I think about it now more than I had before I became sick. It’s time for society to learn how to be less judgmental and more empathetic.
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It's Okay to Remove The Toxicity From Our Lives
We all have that one friend or family member (sometimes multiple) that are always negative and continually try to bring us down. Maybe it’s a friend you have had in your life since you were little. Or maybe it’s someone in your immediate family such as a grandparent, aunt, sibling, uncle or even a parent.
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Why Comparison Only Hurts You More
Comparing yourself, your progress, or your lack of progress with other people’s is a surefire way to multiply discouragement and depression in your life. We often do it without even realizing what we’re doing. In today’s world of perceived or curated happiness thanks to how we often use the internet, it can be so easy to compare what we know to be true of our inner most darkest thoughts and pains with the polished and filtered display of our friends and acquaintances.
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The Term Victim Shouldn’t Exist
I don’t know about any of you, but I think that the term victim needs to be erased and replaced with the term warrior. Victim and warrior can be considered the same depending on how you think about it. I guess you could say it’s like the glass half full or half empty notion.
I don’t blame people for using the word victim; we have been trained our whole lives to call people victims when something bad happens. When you hear the term victim it sounds like they are powerless when in reality no one is powerless.
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When Medical Progress Isn't Going Your Way
To me, progress is simple things like learning how to embrace the cards you were dealt with and figure the ropes around managing your thoughts and your daily therapeutic treatments, even if you’re just barely hanging on to the potential of future hope.
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Don’t Judge Someone Until You’ve Been in Their Shoes
“You don’t look sick.”
“Thank you and you don’t look stupid.”
I might look healthy on the outside, but that doesn’t mean I am healthy on the inside. I might not have a broken bone, I may not have lost a limb, but I am still sick.
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One Liners For When Life Gets You Down
This week I have a simplified compilation of one liners to share with you. These statements have kept me going many days and have been a huge encouragement to me through the long years of CPS pain.
Life with chronic pain, near death experiences and lessons learned:
Resist the impulse of helplessness.
Never let familiarity steal your ability to absorb.
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It's Okay to be Down
Being in constant pain can be detrimental to our emotional and mental well-being. Sometimes I feel that I shouldn’t be sad and I think to myself, “when is enough actually enough?”
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If Central Pain Syndrome Was A Time Sensitive Statue
"That's why you can never relax . . . you feel guilty if you think you're wasting time." -Wayne Jacobsen
This quote has been blowing my mind and is having me rethink what a waste of time is and what a necessary part of a process is. I'll be honest, I've felt guilty about not being nearly as productive as I'd like to be while having CPS.
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Dreams are Meant to be Followed Regardless of Circumstance
Just because you are constantly hurting doesn’t mean you can’t follow your dreams. Being in pain 24/7 can be destructive to a person’s physical, mental, or emotional health. It helps to have goals or something that makes you excited. Life can be a roller coaster with things changing constantly.
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How To Tell When You Are Making Progress With CPS
Celebrate progress, no matter how fast or slow the pace.
Each of us is on our own journey to health and wholeness, no matter how bumpy the road looks along the way. I have found that one of the best things you can give a person is the prerogative to their own process in their own timing.
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Why the Pain Scale Doesn't do Our Pain Justice
Everyone has been asked to rate their pain on a scale from 1-10 whether you have chronic pain, or you just fell. When you are asked the first time you basically know what number to choose, but really it is all subjective.
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How Chronic Pain Ages You
“Ugh, I feel so old”, said a 20-year old.
That statement can be heard from many young adults, this writer included. I have heard many people say, “Oh quit complaining, you are so young” or, “Oh to be young again” and even, “When I was your age…” …get the picture?
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What It's Like To Have Brain Fog
Like the foggy weather, it seemed to blow in from nowhere.
I couldn't think of words I wanted to say. I knew what I wanted to say, but it felt like there was a disconnect from my brain to my mouth.
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