What Did You Say to Me? (Trigger Warning)



“I wish I had time for DIY stuff. If only I had the time to do what I WANT like you do. It must be nice.”



Really…?

Yep, this came at me again! Sheer stupidity or fundamental lack of understanding? I honestly do not know. I’m trying not to let it piss me off. I’m losing! Here comes a rant…


TRIGGER WARNING; RANT. STOP HERE.


So, yes, person(s). I have time to make shit and write shit. You don’t? Then maybe you need to excel at your job and not worry about what I get to do. That’s right. You do you, I’ll do me.

I was terminated (fired!) from my job for medical reasons. I did not decide to ‘just quit.’ I have a damn college degree! I had a career! I was a passenger in a stupid car accident that created this fibromyalgia, chronic pain, PTSD world I now live in. I didn’t seek it out, I didn’t ask for it. I can’t just think it away, or I would have…

I get disability ‘income.’ You think your taxes pay for my disability income? I paid into this system, too! Since I was fifteen years old, I have paid into the Social Security system. In fact, I’m still drawing FROM the real income I personally have paid into Social Security. I don’t answer to you. So I make shit and write shit.

Just for you, here is some added information you may want to consider. When you are in chronic pain, your brain is very busy with the task of pain management. It begins to act like a one-trick pony, forgetting it needs to manage more things than just pain. I write because it is mind work. I make things because it is mind work. I have to exercise my brain. I have to channel my mind away from pain… there is no cure for chronic pain.

Would you like to see my medical bills?

Would you like to read my diagnosis?

Would you like to pay for my medical expenses for one lousy month?

Be sure to let me know. I have it all! All the documentation your little heart desires. Yet, I still find the time to make shit and write shit! (I too, wish you “had time…”)

I hope you never have to experience what I have had to experience. I hope you never have time to make shit and write shit. Honestly, I do not wish even a moment of pain for you. My only hope is that you would get educated and watch your tongue until you are.

Finally… I want you to know I will never, EVER, even think of you again.

RANT over.

 

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Talking Bluntly about Night Time Chronic Pain

September is National Pain Awareness Month.

I have a chronic pain disease called Fibromyalgia Syndrome.

You can read what fibro is: here.



(This is a typical night for me. I describe it as follows.)

I think the hardest thing for a person with chronic pain is to tell you how they are doing. (Seriously.) You ask me how I’m doing… really? Let me start by asking you, “do you really want to know?” (Probably not, sometimes maybe?)

When you ask me how I am? “I’m fine.” (That’s a flat out lie!)

I’ve read a few posts where bloggers are addressing pain, chronic pain. They are describing what pain we face and what that looks like because September is Pain Awareness Month. My friend, Terri at Reclaiming Hope describes a typical morning for a person with chronic pain. Terri could have been describing my mornings. You can read her story: here.

I will tell you what a typical night feels like for me.

It begins at about 5PM. I get very tired and extremely agitated. My evening will be filled with aches, pains, and irrational episodic thoughts… I will question my worth in this world.

I try to stay out of sight as the early evening turns into the late evening. I know bedtime is coming and without something to keep my mind occupied, it’s going to be a very long and painful night. The clock says it’s bedtime, as I crawl in, it begins. Pain. Unrelenting body pain!

I may be successful in falling asleep on my own, typically not, then I rely on a medication for sleep. My ears feel full of pounding blood. My legs feel so heavy I want to get a knife and stab them until I feel relief! My hip feels like my leg has fallen out of the socket, and my lower back starts to spasm. But these pains are the easier ones to deal with… it gets much worse.

Are you still with me? Have I shared too much? It’s very possible you are bored or feeling somewhat miffed! After All, you are an intelligent person. You certainly can tell if another person is in pain. Well, I don’t look sick! I might look tired, but not sick. I am in real pain every single day.

The night continues, and by this time I have been up at least three times. So here we go again as the next symptoms have their turn with me…

My arms will start jamming up, causing shooting pain throughout my elbows, upper arms, neck, head, and shoulders. As I try to relax, I’m often jolted back into my harsh reality by shooting pain. I try to hold myself tightly as it feels like my body is being pulled apart by some malevolent being. This is very unsettling not to mention extremely (yes) painful!

After diagnosis, a few years into my illness, I became basically bedridden. At the beginning of my relationship with my future hubby, I would be awake about four hours a day. That was it. My normal. I could push through a day once in awhile. I made sure to spend that precious ‘awake time’ with Jeff. Then this disease turned upside down on me. I now get maybe a total of four hours of sleep at night. This lack of sleep causes me to lose days! I am mentally a train wreck and physically spent and in pain.

But. You ask how I’m doing?

“I’m fine.”

September is Pain Awareness Month!

A Destination Starts at the Beginning

On January 1st, after a year of driving Uber and Lyft while finishing his trading courses, my husband became a full-time day trader. He (Jeff) had been a maintenance technician for almost 20 years, this was a significant career risk! He was hanging up his tool belt for an unknown future. Let me put the emphasis on trader, this means getting in and out of stock options as quickly as possible, making some money, and repeating this process all day long. He is not an investor. An investor puts money into a stock and waits for a long term financial gain. Nope. The hubby just looks for the quick buck. Jeff does not give anyone financial advise, other than to say, do your homework, and there’s a lot of it!

Why the change? Maintenance is a stable gig. After 20 years of hands-on experience, a boiler license, a pool license, including his technician’s license… why in the world would you want to change? Freedom. Freedom from a 24 hour a day emergency cell phone. Freedom from working day in and day out with a messed up back since high school football. Freedom to spend more quality time with an ailing wife who can’t guarantee her health will be at a maintainable level on any given day. Freedom to work in an arena that he only dreamt possible… (that’s the most important one I think.)

Has trading gone well for us? Hell no!!! But my husband is a survivor. He will fight for every nickel, dime, and dollar. He has and does! Day trading is a damn rollercoaster ride. You better be strapped in and ready for the drop, or you will not make it. You will literally be thrown from your seat off that ride! We have experienced the drop, several drops to be truthful, but we were both buckled in! We will continue on this ride.

So, my husband now needs only an internet connection to work. He is completely mobile. I am a blogger. All I need is an internet connection.

We have been going to home building shows for years, one day wanting to retire from the city to a log cabin possibly by one of the Great Lakes. Which one? When? How do we go about deciding where to live? Jeff is the outdoors type. Not the hunting/fishing guy but the camping/hiking kind of guy. He can fix anything, drive anything, and make a damn good breakfast over a open fire! Remember, I have some skills, I was a camp counselor and drove a big school bus. Why not continue ‘camping’ until we decide?

What in THE hell…?

It made sense. The RV lifestyle. We began our research even before Jeff decided to make a career change. The hubby and I are not impulsive people. Heck, he knew me since birth … it only took him 37 years to propose! To be fair, it took me 37 years to accept.

RV trade shows replaced our home shows. YouTube became an invaluable source of connecting with this lifestyle. Real pros and cons were listed, discussed, and re-categorized. We told no one. They’d believe we were daft. Would we be able to achieve what had now become this feverish goal? There would be many discussions, eventually revealing to extended family our plans. Some were good with it, others not so much.

We began to make the changes to get us mobile and into this elusive RV lifestyle destination! We just had to start at the beginning.

Now, this Fibro Warrior begins to find freedom by learning to become a rolling stone!

~Kim

Why is Chronic Pain so Tiring?

With fibromyalgia, as well as other chronic pain diseases, the brain is continuously firing pain signals. Our brain receptors are consistently attempting to keep up! Brain scans have revealed that those with fibromyalgia are not producing enough of the organic chemical, dopamine. This low-level restricts our ability to maintain a sense of well-being. Remember, the fight or flight model includes ‘freeze’.

Human beings, as well as most mammals, are virtually programmed to avoid pain. When we experience pain, physically or emotionally, we instantly react to the fight, flight, or freeze mentality. Pain, or the perceived threat of pain, requires action! This perception triggers us to respond. (Even unknowingly.) Put your hand too close to a hot burner on the stove, you react!  You go on a hike, there is movement in the grass to your left, you freeze! These responses have been helpful from an evolutionary standpoint. These reactions can be beneficial when directed at an appropriate situation.

When chronic pain exists, the fight, flight, or freeze response also becomes chronic. This chronic response causes undue stress to your body, accompanying the ever-present hyper-awareness that this state brings with it. Worse still, these responses become programmed and automatic. This means that you can be stuck in this survival mode for days, weeks, months, or years at a time. (We commonly refer to this as a fibro flare.)

Our human bodies are just not designed to function chronically in this response mode. This causes our inability to function at certain times. Chronically ill pain patients are already in pain! We experience fatigue and emotional disturbances due to the sheer fact our brains are busy with this nervous system response that we find hard to control. Being a chronically ill individual causes a reaction response to a threat that is sometimes not there and possibly overreacts to painful situations. Think of this as an example, you have a sunburn, you are hurting, and you see someone reaching to touch your shoulder, you react! Now, the same scenario, but you don’t see the person, you only feel the touch … ouch, now how much are you going to react? The bigger the reaction, the more pain you create on your body that is already damaged by your illnesses.

The good news is … we can choose, at least some of the time, how to react if we are aware of our triggers and/or lack of triggers. We go back to living mindfully. We cut down our stress and practice meditation, preventative cognitive thinking, and/or other calming activities we have found work for us as individuals. What works for one may not work for another! So you must find what works to calm you, relax you, and try not to set yourself up for stressful events.

What do you do to calm down your stress responses?

IMG_0255~Kim

500 Followers!

 

I am so grateful to all of you who have followed my journey in this blogging community that I have come to love. I want you to know I write this blog for you, not only for me, it is not solely mine. It is a  blog for those who ask for guidance, but it never seems to come. I write for those who want to have hope but find it is ever so fleeting. I write for those who simply want to be understood, but the cost of seeking out this understanding runs too high. So this is not just my blog, it is yours, too. My wish is to be a good steward and provide you with information, guidance, and understanding. In return, I welcome and receive all that you have given me. Your time, your comments, your blog posts. I am so lucky to have found this community!

Thank you so very much!

IMG_0206 I Tripped Over a Stone. ~Kim

 

The Underlying Cause of Fibromyalgia

I happened upon a ‘little’ medical journal that ended up being a fascinating read. I like to explain fibromyalgia in relatively simple terms, but this article made me stand up and take notice. First, we will explore what the “experts” concluded. Then I will let you know MY conclusion!

According to the US National Library of Medicine and the National Institute of Health, the underlying cause of fibromyalgia is physical and emotional distress.

Both physical and emotional stressors are frequent fibromyalgia triggers. Bodily trauma, particularly a whiplash injury during an automobile accident, is a recognized fibromyalgia trigger. Also, different types of infections have been associated with the development of fibromyalgia and include viruses (hepatitis C, HIV, herpes) and Borrelia, the infecting agent in cases of Lyme’s disease. Women with fibromyalgia have increased incidences of prior sexual or physical abuse.

Moreover, fibromyalgia patients are often immersed in a stressful lifestyle. A prospective investigation found that the development of this illness was associated with workplace bullying, high workload, and low decision-making possibilities. Anxiety and depression are frequent fibromyalgia companions. Furthermore, many fibromyalgia patients appear to have created their own “lifestyle stress” by physically or mentally overexerting themselves, being perfectionists, workaholics, or engaging in a disproportionate self-sacrificing behavior.

 

According to Kim (Me), the underlying cause of fibromyalgia is a whacked out central nervous system!

Ok, I like what the journal article had to say, and yes, those are undoubtedly underlying issues. It still doesn’t explain why MOST of the population doesn’t have this disease, then!?!? Who doesn’t live with daily stressors? Why more women than men? Why? But, in theory, I agree with their description of possible underlying causes. (They are doctors reporting this stuff, after all.)

So whether our fibromyalgia was caused by trauma; physical and/or mental. A virus, infection, stress, or even if there is a genetic component we still haven’t looked at, the sympathetic nervous system went into overdrive and caused our central nervous system to go nuts. The fight or flight messages cause pain signals to continually fire! Our brain sends these pain signals to our bodies. All day long. There is also the freeze response that coincides with the flight or fight response. You can do nothing but freeze, become stuck and not be able to make decisions. This is frustrating for all, especially for the type A personalities. 

There you have my conclusion. Really, I’m just asking for more clarity and less big words! I think we have a long way to go towards defining fibromyalgia and an even longer approach to answering what types of fibromyalgia are we facing?

I’d love to hear your thoughts about what you believe is the underlying cause of your chronic disease?

IMG_0250~Kim

The Shadow Boxers

I co-wrote The Shadow Boxers, Fighting Fibromyalgia, Your Personal Journal, with my friend, Karen Anderson. It was published in July of 2017 and now sells on Amazon for only $9.99. You may be interested in checking this book out further. We believe in offering options, not opinions. (There is also a Kindle version for $4.99.)

This book is about Fibromyalgia but can be used as an interactive journal for whatever chronic illness you have. The teaching elements; Seven Areas of Postive Change and Six Healthy Habits to Develop are written for anyone with a chronic illness. This is an interactive journal, so there is ample space to write down your own ideas. You decide what to implement in your life, and you decide what will work and what won’t. At the end of the book, you will follow prompts to write your very own story!

“Change your outlook! This new interactive Journal addresses day-to-day fibromyalgia challenges, showing you how to fight flare-ups, effectively cope with chronic illness, and participate fully in your life again.”

 -Editor, CreateSpace

The Shadow Boxers, Fighting Fibromyalgia, Your Personal Journal

I hope that you learn to live with your chronic illness the best way you know how!

Live your best life!

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

What is Your Truth?

This is your disease telling you what to feel, how to feel… where are your thoughts in this process? What is your truth?

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According to The 7th Stage of Fibromyalgia,  you would be in stage 5, possibly moving into stage 6. This is a tough time because you realize, this illness is not going anywhere. You have Fibromyalgia Syndrome and it is real and it is a disease. This is a life sentence! The positive, however, outweighs the negative because you have MADE IT this far! You made it through all the medical testing, the uncertainty, to the diagnosis!

Now you decide as you move through the stages, getting to the 6th stage, do you stop here? Hopeless, afraid, and feeling useless or do you find your purpose? Do you move into stage 7 and accept this disease and learn to live your best life with it? Or do you continue fighting, exacerbating your painful symptoms daily? You get to decide. In fact, no one can decide this but you. The decision will not be easy. Will you live with your fibro as an excuse or will you find purpose in it?

The acceptance stage comes after a long battle to get well, realizing that you are not able to retrieve the life you lived prior to your diagnosis. This doesn’t mean giving up. This means learning to accept a new way of life, your way of life. Less stress, less pain, less fear, less guilt. You must grieve for the life you planned but cannot live out. Once the grieving is done, this takes time and you will re-visit grief many times. Finally, you will find peace and purpose in the life you have.

Explore, learn, find what drives you. You must find purpose even with your limitations because you still have limitless options to choose from. You can lead a life that is full and lived well. Find your way to acceptance and never stop looking for better ways to manage your disease. You can do this!

dawid-zawila-279998-unsplashIMG_0250~Kim

For All The Shadow Boxers!

First and foremost, thank you!

I co-wrote the book, The Shadow Boxers, Fighting Fibromyalgia, Your Personal Journal. This is the FIRST interactive journal about Fibromyalgia Syndrome to be published on Amazon -ever!

This journal now sells on Amazon for $9.99! This journal is proving to be very helpful to many individuals with all types of chronic illnesses, not just fibro.

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I am thrilled that the information Karen Anderson and I put into this book has helped so many! I read your comments, receive your wonderful emails, lovely cards, and am excited this book has helped you find your own way to living with your disease. Bravo!

For those yet to purchase a copy, I believe this journal is helping people and it can help you too! Learn to live like a Shadowboxer!

Many thanks!

I appreciate YOU!

 

Also available for purchase through my blog;

 

Live your Best Life!

img_0430 (1)~Kim

Love and Anxiety

Psychology today defined anxiety as; “a normal reaction to stress.” For some of us, this is the case, for others, it goes much deeper than that.

What does anxiety really feel like? It is feeling that everything in your life is broken and needs immediate attention! Heart palpitations, sweat, panic, fear, finding it hard to breathe, and lightheadedness… anxiety can lead to panic attacks, where you may hyperventilate, you may feel claustrophobic, you may feel frightened with it turning to sheer terror that the worst has certainly happened. The tears will come, you will curl up in a ball and just try to get through it.

Over time you must learn what triggers your anxiety, learn the art of cognitively talking yourself out of an anxiety state before it reaches a full-fledged panic attack.  Positive self-talk.

  • What I am feeling is not my reality.
  • Nothing is going to hurt me.
  • No one is hurt.
  • I will not die from anxiety.
  • Just Breathe. Inhale, exhale.

If you love someone with anxiety, and they trust you enough to let them know that they have anxiety, consider yourself lucky. A person with anxiety feels deep emotions. They will never belittle you, never laugh at your insecurities, never pick you apart naming your faults. Why? Because this has been done to them.

Finally, anxiety is a real condition. The more severe it is may lead you to seek out some medical advice. There are medications and therapists that treat anxiety and panic attacks. Be aware of your triggers and choose best how you handle them. Find what works for you.

IMG_0172~Kim

Bring Me Some Damn flowers!

The longer you are chronically ill, the less likely you are to receive a phone call, a card, or flowers. These acts of kindness are a part of your past. You continue to battle your chronic disease but as time passes you get … nothing! You will need all the mental strength you can muster.

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So I’d like to review the media picture I posted above.

  1. I believe I am a mentally strong person. I really could care less if I am even asked how I am feeling, doing, or what I’m watching on the television. (I actually prefer it because after 20 years, how many more times can you explain it?)
  2. I do love challenges! Learning new things, figuring out the best way to go about certain tasks, but I am not keen on change. Change for me is difficult and even sometimes painful. I think I go through change so much in one day with fibromyalgia that I do not seek out other forms of change.
  3. It has taken years of fighting and trying to change what I can not to finally get to ‘acceptance.’ I know what I can’t control, and I determine how I react to a situation. I do my best to feel happiness.
  4. I try to be kind, and I believe I am always fair. I have been known to speak my mind! (This is why I sometimes question if I am kind?)
  5. I will take a calculated risk, but I will not be jumping out of a perfectly good airplane to skydive anytime soon.
  6. And finally, I love to celebrate milestones in the lives of the people around me! I want to be there, and I want to cheer them on. I don’t always get to attend, and to me, this is where mental strength is most important. The phone calls always come,  “where were you?” There is no understanding that I am the one that missed out! I am the one who didn’t get to experience that celebration.

Truthfully, I am not mentally strong all the time.  Sometimes I am a pile of emotional woes. During those times I am usually in tremendous pain or a deep depression or both! I know that I should just shut myself away from the world. I usually do, but there are consequences either way.

The depression I experience is a coexisting condition of my Fibromyalgia Syndrome. Getting through the dark winter is a two-fold problem, the cold is terrible for my fibromyalgia, and the dark is bad for my depression. I try to keep a permanent smile on my face when in the presence of others. It’s just like being in a play. I pretend I am in the lead role and strive to stay in character. If I can complete my performance, I receive a beautiful bouquet of flowers! (Yeah, right.)

I think the beginning of daylight savings time should be a national holiday. I have it circled on my calendar. I have exclamation points and a smiley face. I am like a kid counting down the days to Christmas. That is what the start of daylight savings time is to me. Is there a better holiday? Not for me! The days will be lighter, longer, and spring is on its way! The actress in me can take a bow, and she will receive those flowers! (Dreamer.)

“Smiles everyone!” The curtain goes up, season after season. This gig is hard, the set can be dangerous, and it is year-round work! Somebody? Anyone? Bring me some damn flowers …

 

IMG_0325~Kim

The 7th Stage of Fibromyalgia.

 

I found an article that was written in 2014 by a woman named A. Wise. She talked about there being six stages of fibromyalgia. I read through them and was a bit stunned when I reached the sixth and final stage she described.

Let me do my best, to sum up, *Ms. Wise’s six stages;

  1. You notice something is wrong. You hurt and are tired. You may begin to research to find out what is wrong with you.
  2. You are in a lot of pain and are taking some sort of medication for it. You are exhausted every day.
  3. You are in constant pain and always fatigued. You go to work, come home and sleep.
  4. Unrelenting pain and fatigue. You call into work more than you are physically there. You spend most of your days in bed. At this time people beginning to doubt your illness because you could do things in stages 1 – 3 that you can no longer do.
  5. You have just quit or have been let go from your job, you are struggling to make ends meet. You are applying for long-term disability.
  6. You can no longer hold down any kind of job. Simple tasks you took for granted now drain all of your precious energy. Now you are not only dealing with pain, fatigue, and medications but the side effects as well. You probably now know more about fibromyalgia than your doctor. You find you are without hope.

This is a pretty abbreviated version of the six steps, but I’ve summarized the points that Ms. Wise laid out in her article. Stage number six pretty much ends with you being in constant pain and without hope. I absolutely disagree. There has to be a seventh stage because  I am not being left in stage six with no hope!

(I believe the seventh stage of fibromyalgia is acceptance. *K. Johnson)

Stage seven for fibromyalgia sufferers is acceptance. Acceptance doesn’t mean giving up. It means facing your illness with a new perspective. You find peace with that acceptance. Anger, fear, hopelessness all but disappear. You stop feeling like you are a worthless human being and you find some purpose in your life.

Let me be clear, finding acceptance in your life doesn’t mean getting back into the 9-5 daily grind! It does not suggest keeping your house spotless, cooking meals every day, and running errands on top of it all. That part of you is gone. GONE. Fibromyalgia took that away. You are seeking your purpose.

The purpose you must find is a balance between welcoming the new you and the desire to keep learning about your illness. You must become your own encyclopedia. You must see new things in life that are interesting to you and can be done with your limitations. Find a balance. That balance creates peace and leads you to your unique purpose in life.

Finally, these stages Ms. Wise talks about are very real! People with fibromyalgia move through these painful stages. I just refuse to stop at stage six. I have moved into stage seven; acceptance. I did not want fibromyalgia, I did not invite it into my life, but it is now mine, and it is here to stay. Fibromyalgia is a chronic condition. I will accept it, make peace with myself, and I will find purpose.

 

Live your best life!

( The 7th Stage of Fibromyalgia first appeared on I tripped Over a Stone.)

~Kim

*When sharing the information in this article, please give credit to the authors of the Stages of Fibromyalgia. Thank you! Please share.