Lite ‘Em Up!

Lite ’em up!

-The husband’s war cry heard only by me!

Can you believe it is December? You all know what that means! The reason for the season! The haze of frenzied holiday shopping…

Or does the holiday not exist for you? Too many shenanigans to even deal with? Well, I have news! You still get to deal with the frazzled nerves of retail clerks and rude people. In the real world, they are everywhere!

What happens when you need to purchase some groceries, and your clerk is in a dark mood? What about the guy in line who just can’t be bothered to acknowledge you? How about the lady with the cart who stops right in front of you and parks it?

My hubby is an even-keeled individual. He rarely lets anything upset him! However, it bugs him when someone is just a crab ass, and out to ruin everyone else’s day! He wants everyone to simply be good citizens and perform their duties as they should! If you are in the service business, you provide service with a smile! If you are in a public place, you have manners and be a pleasant person to be around. Period. (Bless his heart!)

I am not even-tempered. I like to play the invisible game… I just pretend rude people do not exist. I can ignore screaming triplets with ease. No problem. If I come across you and you are crabby… have a rotten day! But I’m gonna have a good day!

However, my husband has requested that I use my powers for good! So I engage…

My husband will shop with me. We make trips to the store together. Partly because he now can, and I don’t have to go solo anymore. There are times when he is just scared, I may be having a bad symptom day. Even on decent days, I may not make it through a shopping trip unscathed… I’m a bit of a gravity checker. Don’t dwell on that. I don’t!

As we go about our business, my husband will approach me from time to time and say, “Lite ’em up!” I will approach the offending individual, size them up and… well… say something.

Here is an example:

WalMart. A recent trip…

Checking out our groceries was a slight of a man, not in a very decent mood at all. Just so unnecessary. I got the signal, “Lite ’em up!” I tore myself away from the tabloid magazines and walked up to the clerk with a roll of Mentos in my hand. (Mentos, best mints ever!) The clerk asked if I was with him? (The hubby was ahead of me bagging groceries.) I pointed at my hubby and said, “Him? No… but I’m sure he won’t mind paying for these… if he gets mad, I’ll just let him keep my Mentos.” The clerk stopped completely and looked at my husband and back at me. I whispered, “It’ll be fine, he doesn’t look that big.” (Everyone was silent.) My husband started to laugh, then I did too. The clerk began laughing so hard he teared up.

We saw this guy a few days later, he remembered us and greeted us like old friends! What did it cost us to be kind? Nothing.

We do this! All. The. Time. Never the same script. You just watch the person and figure out what will work. Easy!

When someone is having a difficult day, why not make it better? A compliment. A kind inquiry. Just say please and thank you! It isn’t that hard. I just read my friend Billy Mac’s post called “My Best Work.” It is about simply being aware of the people around you and being kind. Have a quick read! GO! Together we can make this world a better, kinder place to live.

Live your best life!

IMG_7612~Kim

One of Many

Fibromyalgia Syndrome. Two to four percent of the US population is affected by fibromyalgia, that is six to twelve million people. Females make up 90% of those numbers.

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Hi, I’m Kali, I was diagnosed at age 18 with Fibromyalgia Syndrome in 2015.img_1290

I just recently got engaged. I’m looking forward to having a happy little family with my fiance and our future cat children. I’m a chronic illness blogger and a bookworm, never without a book in my hand. Writing and reading for me serve as a good distraction from the pain. I am one of many that suffer in silence because of the stigma that comes with this disease. There is a point that some people reach, afraid to talk to their doctors thinking suicide is the better option to stop the pain. It is not. It will get better. Actively seeking out friends with fibro makes things better, not perfect but better. I live with daily chronic pain … I am one of many.

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Hi, my name is Jill. I was diagnosed in 2016 with Fibromyalgia Syndrome. img_1298

I live in Tennessee and have two boys and three dogs. I like writing letters. I currently have eight penpals. Now, there are eighteen people with chronic illnesses that I send cards in the mail to. Hopefully cheering them up. It is the little things that I find to do for people that give me a sense of accomplishment. I live with daily chronic pain … I am one of many.  

 

 

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Hello, my name is Margie, I became noticeably ill in 2004 and was finally diagnosed with Fibromyalgia Syndrome in 2009.img_1462

I am 64 and have been widowed for 20 years. I live in Oregon with my daughter and several dogs and cats. I love quilting, but my clingy bitchy fibro leech does not! Now I have a hard time working on anything. I do read a lot. I find if I don’t move around much, she is content. I live with daily chronic pain … I am one of many.

 

 

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Hello. I am Mary (Mol), and I was diagnosed with Fibromyalgia Syndrome in 2017.img_1433

I am happily married, and we live in West Clare, Ireland. We have two chocolate labradors, Max and Loki. I’m a blogger newbie. I love to write, read, and watch tv. I live with constant daily pain … I am one of many.

 

 

 

 

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I’m Jody. Hello! I was diagnosed with Fibromyalgia Syndrome in 1995.img_1452

I am married to a super supportive husband! We have four dogs and live in the dusty desert of Texas, where the expansive night sky feeds my astrology addiction. I’m a proud mother of two grown sons, a bonus daughter, a beautiful granddaughter and a grandson who will arrive in September! I live with constant daily pain … I am one of many.

 

 

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I am lucky enough to call these women my friends. After being diagnosed with Fibromyalgia Syndrome in 2001, I fully understand the fighter mentality it takes to be a Fibro Warrior, and these women are the definition!

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Hello. My name is Kim. I also live with constant daily pain … I am one of many.img_1292

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Trigger Warning: The Husband Speaks

We (the hubby and I) begin simply enough in the bedroom… on weekends we watch movies in bed. Popcorn, puffy pillows and two massive smelly dogs happily snoring at our feet. I was telling him I wanted to interview him for a post about the healthy ‘partner’ living with a chronically ill loved one. I explained when one person gets a chronic illness, there is a very high divorce rate. He was reluctant, and I was insistent. What started as an interview turned into me writing as rapidly as I could! Jeff had powerful feelings on this matter…

Kim: Ok, honey, let’s just start with why did you pick me when you knew I was chronically ill?

Jeff: Everybody comes with something. Whether it’s a weird sexual preference, maybe they like being slapped around? [Kim gasps.] I don’t know! But everyone comes with something. That’s ultimately the truth. When I got you, I thought I knew beforehand what I’d be dealing with, but it was so much more. I made sure I was all in before we said our vows.

Kim: Why do you stay?

Jeff: That’s not the right question. Why don’t THEY stay? What the f*ck is wrong with them? [Jeff is now pacing the room.] You get married and promise to love this person, then you bail? What’s that about?!?!

If you are not growing, as a couple, then what is the point? Obviously, that person stopped maturing. WHY?!?! Did you take the same vows I did? For better or worse. I meant it. I just don’t get it… bailing.

Kim: Alright love, let’s go back. You just found out I had Fibromyalgia Syndrome. What did you think?

Jeff: You were in trouble. Here is my life long friend and you are in deep trouble. I wanted to help you, there was no question. But, was I in love enough with you to marry you? I mean, we loved each other. There is a love between friends, and then there is the passionate love. You’d like both, but you have to separate the two. I was trying to decide if I was going to be your friend or your lover? Did I want to be both? 

It’s like seeing a car wreck.

Kim: Now I’m a car wreck?

Jeff: You aren’t the wreck, this is the only way I can think to explain. Hey! You wanted me to answer questions.

Kim: Right, go ahead, I’m sorry I interrupted.

Jeff: It’s like seeing a car wreck and you have to decide to stop and help or not. I am going to stop and help! This is who I am. There is no question, it’s a given.

I made a decision to commit to you, to us. It isn’t about ‘you’ getting this diagnosis. We both got the diagnosis! I was the one who signed up for this! I mean, to come home and sit in your lazy boy because you put in your time at work and do nothing all evening? You do nothing for your spouse? You are in a relationship! This is not OK!

I understand divorce. I do. One partner matured the other didn’t. They didn’t work on it together, they didn’t grow as a unit. It’s like getting your driver’s license. You have to work at it. Are you going to give up because it’s hard or do you want to be able to drive that car? Work at it! Learn it.

I’m not a quitter. Never have been ain’t gonna happen! I may be tempted or dissuaded, but I am not a quitter.

If they thought going into a marriage that it was going to be all rosy I’ve got news for them, it’s not. Does anyone even stop to even conceptualize the reality of spending your life with another person? Where’s the common sense? You’re an idiot!

Kim: Maybe you should be a marriage counselor?

Jeff: It’s like signing a 30-year mortgage, you aren’t getting out in year six when shit starts falling apart in your house. Either you are in, or you are out. Who in their right mind thinks everything is going to stay the same? Really. That’s the question.

Kim: Well, okay then! Thanks for participating in this weeks blog post.

Jeff: I was forced!

Kim: Happy wife, happy life.

Jeff: More should pay attention to such things.

~~~

A lifetime doesn’t seem long enough with this man…

 

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Hello Chronic Illness Vampire!

When is the last time you asked someone how they were and meant it? You really wanted to know how another person is doing? Physically and emotionally? Not asking out of politeness or obligation. Not asking so you can tell that person about your issues. What was the last conversation you had that was not about you?

It’s interesting with a chronic illness… chronic, it is with us forever. We begin to live in it 24/7. Not by choice but because we have to. We have to put our health first, and for many of us, it’s the first time we’ve ever put ourselves first. We learn to say, “No.” We learn what pacing is about, and take our medications on time, as prescribed. We do our best not to intentionally do things that make our symptoms worse. We eventually learn to live within our limitations. We also realize our chronic illness is the most important and time-consuming part of our lives. It has to be. To others, it is just not.

Have you become your own best friend or your worst enemy. Can you name three things you did today that have nothing to do with your illness? Just three. I’ll even give you one; watering the plants… if you are having a hard time coming up with three things, you have a bit of soul searching to do.

It’s time to separate the person (that’d be you) from the illness (that would be the little chronic illness monster that follows you around). Everyone needs some alone time! You are in there, the you that talks, laughs, smiles, and still enjoys the fun. Yes, you are still that person!

You know that one person who calls, you look at the caller ID and groan, do I have the energy to deal with him/her today? We all have one of ‘those people’ in our lives. Have you ever wondered what people think when they see your name on the caller ID? How much fun are you to talk to? How much fun are you to go out with? How much fun are you to live with?!?! You should be asking yourself these questions because your illness is never going away.

It’s not your fault you got sick! It’s not your spouse, partner, friend, parent, or child’s fault either. And. IT IS NOT THEIR JOB to be your constant sounding board as you play chronic illness vampire and suck the life out of all those around you.

For now, think about how you cope with your illness. Remember to be aware of three things you do daily that has nothing to do with your disease. Be cognizant of your conversations, are they always about your health issues? Are you genuinely concerned about other people’s lives?

Beware; if you are not aware of these things, you will become your disease.

No one wants that for you, absolutely no one.

Live your best life!

img_1036-2~Kim

She Reached Out…

I found myself in a very unique position. As I began blogging, knowing I would be sharing things that had happened to me that were traumatic, I wavered on creating a false identity. I write poetry under the name k.Lynel. But this, blogging ‘thing,’ seemed different. I decided against it and wrote under my real name.

I thought if I could write it, maybe… just maybe I could help someone??? So I wrote the painful truth and put my contact information on my blog site. I started receiving emails! Some people just wanted to share their stories but some needed help. I answered the emails and followed up with those asking for my help. There are many people I have a bond with. One lady, in particular, recently made an incredible impact in my life, “T.”

“T” reached out, in fact, she wrote a comment on one of my past blog posts that said, “you said we could reach out to you, and I am reaching out!” We began emailing and texting from that moment on. Although I am trained in counseling, I am not licensed. “T” had me scared. I honestly thought I was too late to assist her in any way. Then, she turned a corner. She struggled, fought like hell, and faced her illness. “T” is a warrior. Recently, she actually posted in a support group I run. She has been reluctant to post, and I encouraged her to remain a member but wait to post until she felt comfortable.

The time came, and “T” posted a question in the group. The group responded with ideas. I responded with how I was glad to read her question and that I knew the group would have many helpful suggestions for her. Her comment that came back to me was truly humbling… then, I figured out all the pain, trauma, fatigue is worth it, for just one comment in my lifetime like this…

“When the woman God sent to save your life makes a suggestion, you should do your best to follow that suggestion. I honestly don’t know what I would do if you somehow weren’t in my life. Just the facts…”

(copied and printed with permission from “T”)

What a wonderful gift to receive. I felt joy! I felt a sense of purpose. I think for me, joy and purpose come from helping others.

 

Live your best life!

img_0992-4~Kim

The Prospect of Joy

Do you have joy in your life?

Are you a joyful person?

Do you radiate joy?


joy

noun

\ ˈjȯi  \

Definition of joy

1athe emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires: DELIGHT
bthe expression or exhibition of such emotion: GAIETY
2a state of happiness or felicity: BLISS
3a source or cause of delight

Or we can go another route; 

joy

to experience great pleasure or delight: REJOICE


My husband and I were actually having an excellent talk about where we are in life, and where we are heading. We discussed our goals and the steps we needed to take to get there. A form of measurement was required. As we were throwing around ideas and possible completion dates, I looked at him and said I can’t remember the last time I felt joy.
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Jeff said, “You can’t remember, or you haven’t felt it?”
I responded, “I haven’t felt it.”
“That could be a problem.”
“Well, I’m not unhappy, I am happy … but I just don’t know when the last time I felt joyful was.”
“What makes you feel joyful?”
“A new puppy! No, seriously I do not know. It’s just gone.”
“Well, you better work on getting that back, maybe there are steps you can take or something?”
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Steps to find my joy? Where does one begin this little project? Am I really even sure I am lacking in the joy department? What if I have joy and don’t know it?
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What if I’ve used my share of joy and there is none left for me?!?!
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I decided to take a bath.
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My husband acknowledged my choice and stated, “I hope you find joy in that bathtub.”
I gave him my ‘warning grin‘ and responded, “so do I, sweetheart, so do I…”
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How do you find your joy?
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Ignorance on Reddit

I am hesitant to post this, but I think it’s important to acknowledge the lack of understanding about Fibromyalgia Syndrome.

Most of you are familiar with the Reddit site. You may know their tag line; Trending News and Honest Conversations. I must admit, Reddit was a foreign site to me until it came up in a google search. I clicked on the site and read a disturbing conversation. It states that it has been ‘archived’ but looks to have taken place only one year ago.

The person who asks the gateway question is either a personal trainer or a Dojo instructor. He (or she) has their first fibromyalgia  “student” and is seeking out assistance on training alternatives.

The conversation that ensues stunned me. It starts out well, then goes downhill.  There is a point where a confrontation ends up getting nasty, and the commenter deletes all of their posts. To enrage a person that much, this commenter must have said some very ignorant stuff. I do find the final comment satisfactory, apparently, a physical therapist who understands fibro.


***This may be disturbing to read, choose wisely.***


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It is very apparent to me that the misconceptions about fibromyalgia are very much alive and well. What I take away from this conversation is that we have so much more to do when advocating for Fibromyalgia Awareness.

IMG_0250~Kim

What About You?

I blog. I write about myself all the time. I write about chronic this or that. I get sick of me!

What I’d really like, is to get to know you!

I want to ask you three questions! Don’t think, just answer!

Ready?

  1. What was your favorite childhood game?
  2. What did you name your first pet?
  3. What is your ‘go to’ article of clothing?

Write your answers in the comment section! It’ll be fun! 

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My Answers:

  1. Uno (still is).
  2. Meggie.
  3. Oversized, ivory cable sweater.

Kill the Cobra!

So… the hubby and I are both working from home now. How nice, right? We have a strong relationship! I love him! I couldn’t imagine a day without him, but this is incredibly ‘different.’

He has begun day trading, “options.” I know about trading Forex, I am at a bit of a disadvantage with all his talk on options. Calls, puts, strike prices and so damn much more. I’m learning, but it is overwhelming for me right now. The hubby is overwhelming me this week, and he is aware of it which makes it worse in my mind.

I am a cobra! I am quick to bite! I strike when I lose my cool and call him out on even breathing too heavy. Not cool of me! I speak, and then I apologize. I am being a jerk and don’t know what my problem is… it feels like there isn’t enough energy in the room for the both of us. Every movement he makes startles me!

The beauty of this arrangement is that he can help me on my difficult days. Most of my days have been difficult as I am struggling to get my strength back from a long period of illnesses. I am grateful for his help! He cooks, does laundry and takes care of the dogs. He loads and unloads the dishwasher and cleans the bathroom. My gawd, how did I get so lucky? What do I do? Act like a Cobra and strike!

We are working on boundaries. Maybe this is a good thing as we plan to make our move to an RV this summer if the trading goes as planned, and we become mobile enough to make this kind of attempt. I need to watch my tongue. I have a hard time accepting that I can say mean things to the man I love. I really love that he is able to be home and I really love that he really has a knack for trading. I want this to be successful! Then I open my big mouth and bite!

I believe it goes back to the “lack of energy” available in the room where we are both pounding on our computers. We both are trying to talk or listen to our own music. Headphones have helped, but they don’t solve everything. My husband is a very empathic man! This makes him everything he is to me. The only downside is when I wake up like a cobra and he feels my wrath. I need to find a way to kill the cobra.

Are any of you currently home with your spouse all day long? How do you separate work time from social time? Do you have any boundaries in place? How do I kill the cobra?

IMG_0325~Kim

 

 

My Apologies

I wrote a post about a night in my life recently where I made a decision that could’ve had dire consequences. I took that post down. The responses in the comments were very emotional. From fear based to downright anger with many passionate requests for me to seek some additional help, counseling, resources, etcetera.

I handled the information I delivered in that post very wrong.

I had hoped to relay in my post that even though we have good things going on in life; friends and family that love us, depression can and will sneak in and make you do things that no one would expect you to do. Depression doesn’t make sense! It doesn’t “fit.” It is a senseless disease that I hate admitting I have.

This is clinical depression.

This is a diagnosis that brings me to my knees at times. There is nothing to be depressed about, so why am I depressed? It is all in my head, literally. Due to a closed head injury, I now lack the necessary serotonin in my brain to achieve an overall sense of well-being. Depression, for me, feels like a very selfish disease.

How am I suppose to tell someone who they, themselves, have their own difficulties that I am feeling depressed? How do you walk up to a homeless person and complain you wish you had more storage in your house??? How do you complain when others have many more difficulties than you do? You don’t.

What seems irrational becomes rational. Things that I believe I would never do sometimes seems like the only thing to do. I have clinical depression. I must take care to relay my feelings when I am not feeling safe. I admit I failed to reach out. Depression embarrasses me. Depression makes me feel weak. Depression makes me feel like a self-centered, self-absorbed child.

The reality is I have clinical depression, it is a disease I did not ask for but I must deal with.

I do my best to fight, but the simplest things can become overwhelming. I get so tired, I get mixed up, and I got careless… I made a very bad decision.

I don’t need to be chastised. I beat myself up on a regular basis. I know how I should handle this disease, but I make mistakes.

When you are dealing with a person who has an illness, the most powerful thing you can ask is “How can I help?” Those are significantly powerful words. Even if the person doesn’t know, it opens the door for further communication.

“How can I help?”

 

Screen Shot 2018-02-25 at 12.48.43 PM~Kim

The Pineapple Persuasion

I’ve decided I like pineapples. No, I really do! I like the way they taste. Sweet. (Get your mind out of the gutter perves.) I like the way they look, prickly on the outside, with a crown on top! I love the colors; yellows, oranges, and greens…

I buy pineapples, I eat pineapples, I decorate with pineapples. I love pineapples!

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A pineapple, according to my husband, is me. I wear a crown. (If he is King of his Castle, I am his Queen!) I am prickly on the outside but sweet on the inside (once the core has been removed). The darn core has been somewhat of a buggar to deal with as of late.

I see my core as holding all my preconceived notions. All ‘etcetera’ interests, and ideas, everything stored for examination at a later date. All to be processed as true or false, some preconceived notions of illness behaviors, some judgments… it’s all there, in this core.

The meat of the pineapple, the sweetness, that’s me. That is me and how I try to see the world! Without the tough exterior, I wouldn’t last very long… and anyone could crush me, eat me up! No, I have a hard shell, protecting my sweetness. The shell must be removed to get to this part, the sweet part.

My crown stands tall and green. It is lovely, strong and can topple over and still maintain its proper place on top of my pineapple.

But alas, the core had to be removed. For all its protection, too many ideas confuse the pineapple, and the core will end up eating away the best parts of the pineapple. Turning the sweet to sour. The ill-fated preconceived notions turn random false facts into truths. No, No. This, we can not allow.

Screen Shot 2018-02-25 at 12.48.43 PM~Kim

 

There is ‘Stuff’ Going On …

I have a hard time staying present when talking to friends, family, even my husband some days. I am always bringing up the past, my past. They have raised families, attended weddings, vacationed, changed jobs, moved … all the things ‘normal’ people do. I wonder, is my thought process that stunted? It is. I am more than a bit self-centered when it comes to dealing with my illness. To me, it is the most important thing in my life. To others, it simply is not. An illness is just ‘stuff’ that happens, usually to others

Let’s face it, most people are either healthy, or they are not. They are fat, or they are not. They are happy, or they are not. And when you ask them how they are? They are fine. When you ask someone with a chronic illness how they are… it depends. If they have had their illness for some time, they are fine. If they just got it, you will get an inventory of how they are feeling. If they are not feeling well, you may get, “Like you care?”

No wonder those of us with chronic illnesses do not gain much favor after the diagnosis of ‘chronic’ comes. It’s really a crapshoot dealing with us! A gamble. We are certainly not current in our thoughts, ideas, or family events and happenings. Even though chronic illness tends to take away our ‘ability to engage,’ we try to fight our way back. So, just what is there to talk to a chronically ill person about besides their illness? Those of us with chronic illnesses need to think of ways we can communicate and be present in our lives!

Human beings, in general, get over ‘stuff.’ An illness to most is just ‘stuff.’ People have a lot of ‘stuff’ happening in their daily lives. To a person with a chronic illness, this ‘stuff’ is an all-consuming, every minute of an everyday companion. It must be listened to, cared for, attended to. Hence, we must seek balance. We must seek some semblance of “normalcy.”img_1699

It is time to put the little monster called fibromyalgia on a schedule. You can’t just ignore it, although at times you must put on a brave face and pretend it doesn’t exist! There is a process you must learn. You must re-engage in real life. Current life. When was the last time you had a conversation about anything without an illness in it? Aches and pains, flares and fog? Can you think of a sentence that doesn’t start with, “Because of my [insert name of disease]…” Your deceptive little chronic companion stamps its feet and demands to be heard! It is a two-year-old throwing a tantrum. Guess what? We are smarter than that two-year-old.

We are smarter than a two-year-old. We are done being controlled by a tantruming, time-consuming illness. We will tend to it, on our terms! We will pay attention to it, on our time. We will re-engage in current events.

Ideas:

  • We will find a support group in which to share our feelings, ideas, and resources with.
  • We can make and follow a schedule to reduce the probability of fibro flares.
  • We can follow our medication schedule to keep flares at bay.
  • We can stretch and gently exercise every day.
  • We can pursue hobbies that have nothing to do with fibromyalgia.
  • We can keep a journal, ‘My Complaints Journal’ so we don’t feel the need to report our ills to others, uninvitedly.
  • We can seek out daily, positive activities so we can open a conversation that is pleasant and cheerful.
  • We can take charge of our illness, to the best of our abilities, it will not be in charge of us.

What are additional things, ideas, and/or activities,  we can do to participate and engage in the present?

Let’s live our best life!

Screen Shot 2018-02-25 at 12.48.43 PM~Kim