What on earth is a "Pain Chameleon?" (Contest!)

Recently, a Redditor with a chronic condition coined a brilliant term to describe their pain, that term being “Pain Chameleon.”

Many of us who undergo chronic pain and fatigue eventually learn to interact with others in a fashion that is socially normal – more or less. Eclectix, the creator of the term, describes it well in their wonderful post:

“I recently coined the term "pain chameleon" to describe my natural tendency to disguise my pain. I don't even think about it, and I'm not sure I could stop even if I wanted to, because a lifetime of chronic pain and illness has forced me to act like this is normal in order to interact with everybody else in a meaningful way.

If I reacted the same way people without chronic pain and illness do when they feel the sort of pain and illness I routinely feel, then I would constantly be inconsolable, morose, grimacing, weeping, complaining, writhing, and occasionally screaming. There is no way that you can go through life like this, so even as a child I learned to just act like nothing was wrong.

This way I can still manage to have friends, protect those I love from constantly suffering from my own problems, and have some sort of a life. The problem is that it also isolates me and can even prevent me from connecting or reaching out when I really need to.”

"...a lifetime of chronic pain and illness has forced me to act like this is normal..."

This term is fantastic, because it encompasses that habit we all pick up living with chronic pain or fatigue; eventually, we all adapt to some degree in order to comply appropriately with activities or social interaction. Not only is the term creative, but "social chameleon" could easily be used to describe your pain habits to doctors when they ask you to rate your pain or inquire about painful symptoms that often effect you. 

Next time you describe this to someone, use the term "pain chameleon" and get the word out that just because you've learned to carry yourself well doesn't magically take away the pain!

Design Your Own Pain Chameleon!

Design your own "Pain Chameleon" via crayons, paint, digital media, whatever!

Submit the new face of the pain chameleon to:

NikeNicholson@gmail.com

All chameleons will be posted, and a winner will be chosen. Please keep the drawings appropriate. Send all submissions by May 31st. A winner will be declared on June 1st along with the posting of all the awesome chameleons y'all send!

Ask Me Anything: Volume 1

An avid Redditor, I recently posted an “Ask Me Anything” regarding my condition in order to prep for the launch of my blog.

I've found in situations where people don't understand chronic illness, people tend to be afraid to ask serious questions in fear of offended the person with the condition. It's true that some people are touchy due to idiot remarks like “you don't look sick” or “when will you get better?” And admittedly, sometimes we can appear guarded because of this.

But ignorance and earnestness are not the same as stupidity – I know that people have relevant questions. I wanted to create an angst-free environment where people could feel comfortable to ask anything and everything.

The questions I got were pertinent, legitimate, interesting and very thoughtful!

DalkonShield asks:

“What is your autoimmune disease?”

Systemic Lupus Erythematosus, AKA, “lupus.” An autoimmune disease happens when the immune system sees good cells as foreign cells and attacks the body. Each autoimmune disease works differently. Someone with Crohn's will have more gastrointestinal problems, and a person with Thyroiditis will have trouble with their endocrine system, hormones and glans.

Lupus is unique in that its symptoms are pronounced yet very strange, seemingly random at times. This can make lupus terribly difficult to diagnose. There is no one test for lupus. Doctors often times rely on observing their patient's symptoms. Common lupus symptoms are: butterfly rash, hair loss, mouth ulcers, icy fingers and toes (Raynaud's Phenomenon,) breathing/chest problems, and kidney trouble. See? Very strange symptoms!

waheveH asks:

“How do you tell people you have a chronic illness? How do they react?”

Usually, it comes up eventually in conversation. This is a good example of it coming up naturally, resulting in further inquiry:

Idle conversation is usually how it comes up, focusing on one topic or another. Living with a chronic illness is just so pertinent that it applies to lots of normal situations, like hair, food, sleep, etc.

Most people respond simply by being interested. A lot of people don't really know about lupus, but seem curious about it. I never mind explaining. Knowledge is power! Though sometimes, people don't know what to ask, or don't want to pry.

There have been a few people who reacted badly, but these people were clearly set in their ways and very obviously couldn't imagine being sick each day. I'll usually do my best to educate them. If they still don't understand and refuse to try, then I walk away. People acting negatively due to ignorance is one thing, but purposefully propelling one's stubbornness in lieu of trying to understand others is simply irresponsible, with no dignity, and I don't tolerate it.

truewire asks...

“What are your day to day struggles living with Lupus?”

There are 2 types of struggles I deal with: physical and emotional. The most influential day-to-day physical symptoms often include chronic fatigue, back pain, inflammation and sleep problems. Sometimes, getting up to work or play isn't an option. But there are good days too, and I cherish each one! I also have to properly manage my medications daily.

Emotional struggles often feel more tiresome than the physical symptoms. Sometimes, I feel guilty for not being able to do things normal people do; if I can't work or help others, I feel bad about it. But feeling judged is one of the worst feelings of all, especially when doctors or “friends” are the ones doing the judging.

In short, I have to learn to manage my symptoms in the most effective way possible and come to terms with having a lifelong illness. I have to be okay with myself as a person, too. Basically, holding onto hope and faith becomes essential, because some of the daily struggles of lupus would tear a person apart without a balance of good in their lives.

~ Fin

Doing this AMA was a life-changing experience, because suddenly, people were coming out of their shells to ask the big questions or talk earnestly about their own problems. It became a safe environment for people to express their problems and keep from judging others based on things like the severity of their pain or how they look on the outside.

Submit your own question!

If you have a question about my condition, whether it be a question about health, lifestyle or something more personal, you can send your questions to:

NikeNicholson@gmail.com

Or, send your name, email address and question in the "CONTACT NIKE" box on the left menu of this blog. Don't be shy! Every question helps fuel the blog and rally support!

Stay hopeful and fight the good fight!

- Nike

"Chronic Illness Cat" A Meme for Us!

I cannot emphasize enough how much I adore cats. So when I found out that this meme existed, I just about shat my pants...which for some of us, is just something that happens on occasion. But now there's a cat to encompass that!

You can find the meme's page HERE. Here are some pictures of this godsend from the interwebz! Happy browsing!

If you'd like to show some support for their creators, check out the website and spread some upvotes. Or create your own and send it in!

"May the 4th be with you."

Nike

KNOW LUPUS - Whoopi raises awareness!

Happy Lupus Awareness Month!

Happy Lupus Awareness Month!

It's estimated that over 5 million people worldwide are living with Lupus. Participating in Lupus Awareness Month is a great way of celebrating the life of everyone with this disease!

The international symbol for Lupus awareness is the purple butterfly. Purple is a color commonly used in awareness campaigns. In some cultures, the color purple represents sacrifice. The butterfly is used due to malar rash, or “butterfly rash,” a common symptom among those with Lupus.

Whether you have Lupus or you know someone with Lupus, there are a ton of ways you can show your pride and support!

• Get to know your friends with Lupus
  • Respectfully ask what they deal with, and what day to day life entails
  • Make an effort to understand their mind and body in order to offer positive help should they ever need it
• Don some purple! Wear some butterfly jewelry! Make your support loud and proud!
• Learn more about this disease and other illnesses; visit reliable websites and read up!

Remember, May 10^th is Lupus Day. But awareness doesn't end with the 31^st! Awareness can happen any day of the year. If it fancies you, get a shirt or a bracelet to show your support for everybody in the world with Lupus!

Here are some ideas as to how you can get your purple on:

Purple Awareness Ribbons

http://www.elegantmedicalalert.com/assets/images/lupus-awareness-purple-lavender-ribbon-charm-key-chain.jpg

Awareness Bracelets

http://ep.yimg.com/ay/yhst-65361177377116/support-lupus-awareness-purple-wristband-15.jpg

Jewelry

https://img1.etsystatic.com/019/1/7723834/il_570xN.473220885_ekw6.jpg

Tattoos

http://fc05.deviantart.net/fs71/f/2014/037/b/5/lupus_butterfly_with_lotus_tattoo_by_xorn01-d75d6ea.jpg

Shirts and Clothing

https://s-media-cache-ak0.pinimg.com/736x/58/a2/93/58a293cd215c7dcbffe93c94825ab400.jpg

Stuff for your Website/Page

https://s-media-cache-ak0.pinimg.com/236x/9c/66/c1/9c66c137f8f5a74719f4fc073d2eafe5.jpg

http://www.pagecovers.com/user-covers/05-17-2013/lupus_awareness.jpg

You can show your support for The Purple Moth by recommending this blog using the icon on the left side of the page. Also, feel free to add me to Google + to keep up with TPM, or bookmark or share this blog with your friends and other supporters. Help spread support!

Stay strong!

- Nike