Friday, April 24, 2015

16 Things People in Chronic Pain Want You to Know

"...but you don't look sick."
I hear this & other ignorant statements directed at me all the time. I have been struggling with a difficult chronic pain issue for about 17 months (diagnosed), and it has changed my life. It has brought severe emotional, physical, mental challenges that I am still navigating through.... I never "have enough spoons" (read the article, you will understand...) and I always feel defeated.
Some of my closest friends have actually grown tired of my existing struggles... have told me" it's all they ever hear about" *insert awkward laugh* (when it is no. I hold the majoriy of my pain and suffering in for fear of burdening those around me)... or really hurting me when they have come flat out told me to "knock it off. Stop being so defeatist" which pains me even more, and further cements my insecurities
of feeling like I am just a useless obligation, existing in their lives with only negative, and other hard to say thoughts... driving me down further into my depressed state.
I ask of you who don't k ow how to act around those in your live with chronic pain or illness to READ THIS article & stop saying hurtful things, even if you meant no offense....
you have no idea the daily struggle my life now is.
night and day.
there is NO escaping it.
Take the time to understand & care compassionately. Just because you can't see it like a broken leg sticking out at you, doesn't mean I am not suffering constantly, while trying to "look normal".

I wish I were back to normal, most have no idea.. this offers quick insight..

Note-Content below here in this post is from :

16 Things People in Chronic Pain Want You to Know

16 things chronic pain

1.  We try really hard to look good

We often hear “you don’t look sick” but the truth is that most of us try very hard to pass as normal.  We rest before going out and take our pain meds at the optimal time. At times we hurt so much and are tired from trying to play healthy that we feel like laying down right then and there, but we (usually) hold it in until we get home to our beds.

 2.  It’s not all in our heads

Just because you can’t see it, it doesn’t mean it isn’t there. Our pursuit of healthcare is not driven by hypochondria or need for attention, it’s driven by physical discomfort. What we are doing is looking for something to improve our quality of life, and sometimes the cause of our pain if it is not known.

 3.  We are not making a mountain out a of molehill.

We are actually in more pain than you think we are in. Studies have shown that, generally speaking, people tend underestimate other people’s pain. This may be because chronic pain itself is difficult to imagine, especially if you have never experienced it firsthand. Even those who have experienced similar types of pain in the past have a difficult time remembering it until they experience it again.
John Green Understands

 4.  No matter how long we’ve been suffering for, it still hurts

Steak pain
Having pain for an extended period of time does not give us superpowers to feel it less. However, most people with chronic pain have learned overtime to exhibit less pain related behaviours. So you can never really tell how much pain a person is in just by looking at them.

5.  Sometimes we just don’t have the spoons


Spoon Theory is an analogy to explain what it’s like to live with a chronic illness such as chronic pain. Christine Miserandino, a woman who lives with lupus, originally coined the term on her
The basic premise is that when you have a chronic condition you wake up each day with a certain number of spoons. Every time you exert effort — by getting out of bed, cleaning, getting dressed — you lose a spoon. When you run out of spoons, that’s it, the day’s activities are done.
Chronic pain can be an exhausting condition and this analogy demonstrates the need to budget and loss of control some people experience.  So if we cancel our plans with you, it may be because we ran out of spoons.
Ain't Nobody got spoons

 6.  We’re not lazy

In fact, we often have to work twice as hard to accomplish the tasks that most people do easily.
lazy kat

 7.  If we don’t have a job it’s for a reason

roll on the floor
Some of us just don’t have the spoons to work on top of our activities of daily living. It can turn our pain from bearable to unbearable. Also, most employers are not eager to hire someone that can only work a few hours a week, is completely unreliable, may or may not show up, and may end up leaving at any point during the shift due to pain flares that make being productive impossible.

 8.  It’s really hard to get out of bed in the morning… and always!


But that doesn’t mean we still can’t have fun from bed.
pingpong bed
So if we can’t make it out you can always bring the party to us!

 9.  Every minute feels like an eternity when waiting

the notebook waited

Whether it’s an hour in a waiting room or 5 minutes in line, every minute drags out when you have to hold an uncomfortable position. It’s not that we are impatient, we would just prefer to use our spoons on more important things.

 10.  We are not ignoring you

Pain can be very distracting and mentally draining. We try our best to stay sharp and attentive but if we seem not to fully be there please don’t take it personally.

 11.  We get REALLY excited when we have a good day

excited baby
Physically feeling good is just about the most exciting feeling in the world cause it means we can finally get stuff done! Its like going on a minivacation (except for instead of doing nothing we try to do everything)!

 12.  And get really bummed when when we have a bad day and can’t do the things we love

deal with life

 13.  It can be hard to find a good doctor
Unfortunately, most health care professionals have little knowledge in pain management because it is rarely part of their training. We often go through many doctors before receiving a proper diagnosis and wait months to years (literally!) to see a pain specialist for treatment. Also, doctors too fall victim to the cognitive error of underestimating other’s pain, and vary few doctors are willing to take the legal risks involved in prescribing pain pills. So if we happen to find a good doctor who listens and is willing to treat us, we feel like we’ve died and gone to heaven!

 14.  We are not drug seekers

Hank Green not true
We are pain relief seekers. Sometimes our medical treatment does require the use of opioids or medical marijuana to keep the pain under control and help us resume to as close to a normal life as we can. We take it just like any other medication. We dislike the side effects just like any other medication. And if we find pain relief from another means, we simply stop taking it, despite months or even years of use.
As the Cleveland Clinic explains: addiction appears to be distinctly uncommon in patients without a prior history of addiction. It’s important to keep in mind that addiction is different than physical dependence/tolerance. Physical dependence can occur with many different types of medications (e.g. beta-blockers), whereas addiction is a psychological phenomenon that is not caused by “chemical hooks” and usually requires a setting very different than that of a chronic pain patient.  Unlike street-users, the medical patient is under the supervision of a doctor, is taking the medication in a slow-acting form, and is going home to a life where he or she is surrounded by the people they love.

 15.  You don’t need to give us suggestions or medical advice

We appreciate the thought, but it can be exhausting hearing advice all the time and frustrating when it doesn’t work. Unless we ask or you have chronic pain yourself, it’s best to leave this to the experts.

 16.  All we really need is your love and support

kiss knee better

Sometimes all you can do is just be there, and that’s saving someone’s life!

Thursday, April 23, 2015

This is For the Tough Days...

This is for the days when our hearts hurt like hell, pulsating with a fierce, fiery pain.

This is for the days when we bite back tears, trying too hard to swallow them whole.

This is for the days when our souls feel heavy, so we slump our tired shoulders down, down, down.

This is for the days when getting out of bed feels like a bad-ass, award-winning achievement.

This is for the days when we tremble with anger, our temper on super-short hairline-triggers.

This is for the days when we feel empty, useless and invisible, like a hungry ghost.


This is for those really tough days.

The days that rip us wide open, leaving us naked and exhausted, shivering in the dark.

The days where we just want to give up.

The days where we want to run far, far, away.

But, we can’t.

We can’t run. Or hide. Or give up.

Because if we did, the only person we would be running from is ourselves.

We would giving up on ourselves.

Hiding from ourselves.

So, yes, we can try to bail and haphazardly fling ourselves under a fast-moving bus when the going gets tough.

But the thing is—we actually need ourselves the most on those f*cking tough, trying and terrible days.

Let’s stay.

Let’s stick it out.

We don’t need to understand what we’re feeling.

We don’t need to analyze it.

We just need to stay and support the sh*t out of ourselves.


What can we do?

We can be bold and dive right into the toughness of the day, feeling the icy water drip into our hearts, freezing to form incredibly beautiful icicles.

We can run directly towards ourselves, sprinting with wide open arms, a supportive smile and a glass of succulent red wine.

We can buy our battered souls a big bouquet of blossoming flowers.

We can clear a space and cry a thousand crystalline drops till the skies clear and our salty tear-rain has passed.

We can run our soul a frothy bubble bath, slip into mile-high lavender bubbles and take a breath.

We can retreat from the world, burrow under our covers, sigh, moan and just hurt.

We can ask ourselves, “What can I do for you right now?”

We can be really ballsy, wear our heart on our sleeve and ask a trusted friend for an extra-large serving of support.

We can curl up in child’s pose and cry into our yoga mats.

We can write, paint, dance and sing our hurt, our passionate pain, our wicked grief, and express it no-holds-barred, creating magical art from our madness.

We can cue up an angsty, melancholy playlist and sob or scream or tremble till our hearts slip into a soothed state.

We can reach out, take our own hand and squeeze it hard.


There are a thousand beautiful things we can do to support ourselves.

So let’s vow now to never, ever abandon our sweet selves again.


Because, yes, some days are incredibly tough.

But they can be really juicy, too.

They can be transformative.

They can be beautiful.

They can be filled with inspiration.

They can be chock-full of creativity.

They can be exactly what we need.

So, let’s be bold and stick around.

Let’s be badass and meet those tough days head on.

#staystrong #keepfighting
#keepgoing #chronicillness #chronicpain #depression #twloha #ifyoufeeltoomuch #towriteloveonherarms #elephantjournal #life #lifequotes #inspire #inspirational #inspiring #sad #quote #hardtimes