I’ll never give up!
Sometimes we hit the ground… keep getting up.
I’ll never give up!
Sometimes we hit the ground… keep getting up.
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.
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?
Today I am beginning this post with the hope of answering my own question. I believe I am struggling with coping. I don’t know if it is the heat? The barometer? My medication? Or is it the overwhelming feeling of dread waiting for my body to flare once again. It is basically a fact with fibromyalgia. I know to expect it. I have put together a fibromyalgia toolkit with the items I need to combat a flare. But. I am questioning will this be the last flare I can handle?
I’m tired of feeling almost normal for days then being knocked down by a flare. I’m tired of feeling the increased pain followed by painsomnia. Yes, painsomnia is real. The pain is so excruciating that you can not sleep. All you want when you are in pain is to sleep and find some peace in that slumber. When painsomnia hits, you will not be sleeping. Your flare symptoms will increase even more and will remain with you a few extra days. Why? Sleep heals us, no sleep exacerbates the pain.
I think my body will not give up because it has been beaten down by worse things in this world. I am wondering if mentally I just might break? Fibromyalgia is the gift that keeps on giving. The cruelest part of fibromyalgia is that it is a trickster. You fight through the first few years of this disease in constant high levels of pain, basically flaring non-stop, but you can sleep. In fact, that is about all you can do until your body realizes this is no virus you are fighting but a lifelong central nervous system disorder. Then you get a chance at a few, low-pain, ‘normal’ days.
Mentally, this disease works you over. It makes you think before every action and react to every situation. If I do ‘A,’ then ‘B’ will happen, probably. If I do ‘A’ and ‘B’ doesn’t happen, I may try to do ‘A’ again. This time ‘A’ causes ‘B,’ and you flare without really understanding why it didn’t cause that reaction before. This disease toys with you as a cat toys with a mouse. Soon, if you aren’t careful, you begin to play dead all the time in an attempt to escape the pain. (It works for the mouse at times.)
Try to imagine the worst pain you’ve ever felt. You are given pain relievers to combat the painful incident. Then it stops… you are active again, feeling good, going to social events then the pain comes back. Now, imagine this horrific pain happens to you every month. Now times that by three ‘episodes of pain’ in one month. Each flare lasting anywhere from 1 to 3 days, up to a week or more. How many good days will you have in one month? (None of them will be pain-free, you lost that privilege once you were diagnosed with fibromyalgia.) A few good days, you may even have many more good days than bad. But that flare is always coming!
I consider myself pretty resourceful and very resilient. I have had fibromyalgia for over 20 years. I prepare and plan my strategy going into and coming out of every flare. But I am feeling less prepared this month. Less confident in my abilities.
So, when does one break?
I lie. I wish I played poker because I have turned into such a good liar! I can lie! I could bluff a full house on a pair of twos. Really. Las Vegas, here I come, and I will win because I have developed a poker face. I can look you straight in the eye and tell you how wonderful I am doing while I am in a full on fibromyalgia flare. I even have the voice down. It’s like singing; talk is, just raise your voice an octave and talk out loud with a smile on your face. It’s easier on the phone, but I can do it in person.
What is wrong with me? I can’t even steel a grape from the produce section without telling on myself… now I am a liar?
Self-preservation? Tired of pity? Sick of medical advice? Tired of always being the patient? LIE. It’s not an easy concept in the beginning, and the first few times are utterly painful. You will feel so ashamed of yourself. Once the lie is out there you have to decide, is this how I will handle this or do I cop to the truth?
By the way, if you cop to the truth, you’ll be labeled a liar. Think hard before you decide to become a liar because once a liar always a liar.
I was held accountable once as I told this story about ‘lying’ to another gal with fibromyalgia. She said, “Well, isn’t lying minimizing fibromyalgia and continuing to stigmatize it?” I agreed it probably was… but I have so many reasons for why I lie. I have rules too! And furthermore, I am so sick of someone knowing someone who handles it better, or is way worse off than me, or still does a lot of the stuff I cannot do.
I’m tired, man!!!
So I lie but never with ill-intent. I lie, so others who love me do not need to worry. I lie, so no one has to worry. And, I lie to those who, although it is none of their business, are going to talk all crazy to me with; this ‘cure,’ ‘that vitamin,’ and an incredible ‘new age’ doctor has a cure.
I’m over it … did I mention I’m tired!!!
So, in conclusion, I play my cards close to the vest. I am very choosy who I tell the truth to and when I tell the truth. I weigh my options. Bottom line is I’m over 20 years into this disease. I know it will not kill me. I know I will deal with flares and fibro fog. I know it is not my fault I got this disease. Is it essential for me to broadcast it? My husband gets the message. He has to live it with me.
My fear is, am I becoming detrimental in promoting awareness by not sharing the daily details of this illness with those around me?
I honestly do not know the answer.
The dictionary defines shadowboxing as a form of exercise used for training in combat sports. In psychology “shadowboxing” is a process one uses to overcome a negative self-image so success can be achieved. In the book I co-wrote, The ShadowBoxers, Fighting Fibromyalgia, Your Personal Journal, we define Shadow Boxers as individuals who are fighting against a disease they can not see. We fight to maintain health in the body, mind, and soul.
If you are thinking about purchasing this interactive journal, it doesn’t matter where you are in your disease, this journal will help you make sense of what is happing. If someone you love has fibromyalgia, this book will explain what they are going through. I am thrilled to list a few of the 5-star reviews that were received from Amazon customers who have purchased this book…
I thank the above for their great reviews, and there are more on Amazon! So generous and kind with your comments. Receiving, then maintaining 5 out of 5 stars since July of 2017 is very humbling. It is not only humbling, it feels like I have received a gift I had dreamed of but never thought it would come true.
May is National Fibromyalgia Awareness Month.
I would like to thank the Last Days OF Pompeii, the Fibro Butterfly herself for nominating I Tripped Over a Stone for the Sunshine Blogger Award! I was lucky enough to stumble across this fantastic blog on Twitter. She is insightful and witty. A great blog to check out!
So the rule of eleven comes along with this award. I will answer eleven questions that were asked of me. I will ask eleven new questions and nominate eleven blogs. Here we go! (And I think you’ll have fun answering my questions!!!)
These are eleven blogs I’d like to bring attention to. There are so many more I would nominate, but I know they have already received the award or choose not to participate in such awards. So it’s up to these amazing eleven if they’d like to accept The Sunshine Blogger Award!
Live your best life!
I was working as a Psychiatric Technician in the late 1980’s. You can refer back to my posts by following Before I Tripped Over a Stone, Fridays.
One thing I need to mention…
The patients were being cared for by psychiatrists, psychiatric nurses, and certified therapists. The psychiatric technicians (like me) were responsible for getting patients to their appointments, to therapy, to family sessions… we were more patient management than treatment staff. I just wanted to clarify that. These patients had the best psychiatric care and were treated by some of the top psychiatrists in the state.
The first post about my psych tech position is;
I had been approved to float for three shifts to the adult 6-bed unit. The adult units were in a different hospital than the adolescent units. I had been on this site working the adult unit for depression, and the adult long-term unit. We were required to float 8 shifts per quarter. It kept us tuned into other staff, and unit protocols. There were some floats that were easier than others. Six-bed was one that many dreaded but to be honest, I dreaded floating to the children’s unit. I just had a hard time seeing children in a locked unit and an even harder time with the parents! (Not saying that there was ‘fault,’ just more therapy needed for the entire family and a different setting for most of those children.)
I received my patient for my 6-bed stint, yes, one patient per tech as you shadowed them even to the restroom. My emergency pager was secured to my belt. And in I went … accidentally setting my pager off once during my three shifts. Good Lord!!! They had the WWE response team for that unit! I was impressed. These patients were extremely ill, extraordinarily violent and actively practiced self-harm. Any more information would only be for shock value, and that is not my intention with this post.
I worked those three shifts, and it took every bit of training I ever had received to come through unscathed with my patient. I did it. My patient made it three days without incident. I was ready to go back to crisis. I was going to miss my patient. She was so ill, mentally. I felt so sad for her, and I grieved for her. Her mental illness did not start until her late thirties. She had been a teacher and was a mom. Then all of that was replaced by ‘voices’ and an inability to care for herself. That is how cruel mental illness can be. Cruel.
I returned to the crisis unit. I returned to the unit knowing I did everything I could. There was no doubt left about “N.” I had to make sure I had done my job, and I did.
We had a rash of adolescents come in with drug-induced psychosis. It was spring break. They were mixing alcohol and pills. These types of combinations can kill you, but what they don’t tell you is that these combinations can just fry your brain, forever.
These patients were matched with staff on a one to one basis per shift. We had a procedure called ‘snowing’ them. They were given medication to make them sleep, giving the brain time to rest and hopefully jump start again, processing information correctly. I don’t know what was in those shots that were given, that was way above my pay grade. For 42 hours the patient would be snowed. We stayed with them around the clock, they were never, ever to be left alone. We spoon-feed them, took minute by minute notes. And literally willed them to come back. We talked to them, read to them, played music. When they were brought back out … they were better, or they were sent to an institution.
The worst for these patients (as well as the staff) was the 72 hours beforehand when we had to observe and take notes to produce the necessary paperwork for the procedure to be carried out. Everyone had to sign off on the procedure, up to and including God himself. (I think.)
These patients came in hallucinating and aggressive; sexually and physically. It took all of us working together to keep the ’72 hour holds’ away from the rest of the patients. We were successful the majority of times. At other times we’d have the kids go to their rooms or gather in one of the therapy rooms until we could regain some form of containment over the patient who was having a psychotic episode. I had worked several shifts along with my co-workers with two young gals, both were snowed, one recovered the other was not so lucky, she had to be institutionalized.
A big black limo delivered our next drug-induced psychotic patient to us from Chicago. His father was a big man, thick accent (Russian?) and walked in with his son from hospital admissions. He wanted his son to be treated in our unit. There were no insurance hoops to jump through, this guy had paid cash. When this man’s son walked into the unit, I don’t know if it was shock, fear, or sheer amazement? This kid had to be close to 280 pounds, he was not fat. He was huge! Tall! Muscular! He had jet black hair, and when he turned to look at me, he had no eyebrows. He had shaved off his eyebrows! I had never seen anything like it, black eyes and no eyebrows … welcome “Mr. Big.”
I am working as a Psychiatric Technician on an adolescent crisis unit.
Previous posts on this subject are as follows:
It was on the 5th day After “N” was released I was reporting for my regular shift. The unit director called me into the office and told me, “N” had committed suicide. She told me how he had done it and where. There was no note. Would I like the day off? What. What? What? No, I didn’t want the day off, and I would be fine, I excused myself.
I went to the staff meeting, I was given my patients and was not assigned any intakes, nor assigned to a response team. I just needed to make it through the shift. My co-workers knew that was my goal too. I didn’t want to think about “N.” Yet, I saw him on the unit everywhere I looked…
I made time to speak with “A’s” psychiatrist. Her boyfriend had been calling me threatening me with beatings, rape, blowing up my car ever since I had her put in the time-out room. I asked her psychiatrist if I should take these calls seriously? The psychiatrist said calmly, oh, “A”? She will definitely kill someone someday. He said he would take some precautions. I asked if there was anything he could do. He just brushed me off and reminded me I chose this line of work.
(F**k you very much!)
The patients on the unit had heard of “N’s” passing. There was a definite division happening on the unit; the angry, the grief-struck and the destroyers…
“Dr. Red Crisis Unit. Dr. Red, Crisis Unit immediately.”
We had three restraints that day. I had been down for dinner and heard the code, for the third time and took off running for my unit. “Kim, this one’s yours!” It was one of mine that was going off, I assembled a 6 point restraint team, and I walked in to begin. I looked at my patient and asked him to sit on his bed and show me that he was calm, or we would be taking him to the time-out room. He wouldn’t comply. I looked back at the door of his room where my team was waiting, they looked like they were a mile away! I was in trouble. I broke protocol and called out to Rick who was my point man on the restraint to take over. I started walking for the door, it felt like it took me an hour to get to the door frame. Rick stepped in and lead the restraint.
I went to the nurse’s office, put my jewelry back on, took my purse out of the locker and said tell the director I won’t be in tomorrow either… I walked off the unit.
I would end up taking three days off. I had to deal with those death threats. The police were not that helpful. One savvy telephone operator taught me a few tricks to make the caller believe he was being recorded by a security agency. I let my anger loose on him a few times, especially when he would say creepy things like, “I like the red sweater you wore today.” I knew I wasn’t supposed to engage with him but I would. I would tell him, “I am not in the mood to be played, do something or get the hell off my phone!” (The phone calls lasted for about two weeks then stopped abruptly.) But. I kept having nightmares that “N’s” parents were at my apartment telling me I didn’t do my job and “N’s” death was my fault.
“N” was the very first patient I ever knew personally that actually committed suicide, but he wouldn’t be the last… I remember them all. Devastating is the only word I can think of.
I called into scheduling on the fourth day and asked to float to 6-bed for a week. “WHAT?” The staff scheduler couldn’t believe it.
The unit we referred to as 6-bed, was feared by all staff, (if you had a brain). The team stayed pretty much on the other side of a reinforced glass window. When you went into the unit, you had to wear a pager, and if that pager alarm was pressed, you had back up right away. I needed to test my skills. I needed to see if I was still sharp or if I missed something with “N.” Was it my fault? I had to find out.
In the 20 plus years I’ve had fibromyalgia I have heard some pretty outlandish things. I’ve tried some pretty weird treatment programs and medication combinations that now I look back on and think, how could I have been so stupid? And secondly, that was a lot of wasted money I did not have to waste!
What discourages me is how many ridiculous ideas are offered up as truths for those who suffer. We face disbelief, so-called cures, and magic pills. Still to this day! Have we learned nothing? It is estimated at least 5 million US citizens suffer from fibromyalgia. That number is thought to be much higher because fibromyalgia is so under-reported.
Just as an example, last night I read a couple of articles that infuriated me. Both articles were published in 2016, I would like to share my abbreviated version of each with you.
I stand by my experience that different treatments and medications work differently for each patient. I have no problem with any treatments, medications, or edible brownies if it is something that works for you, do it. I do have a problem with under-educated people making decisions about treatments and medications for others based on their personal opinions. Don’t judge. When you experience pain every day, you will do whatever you have to do to tame it. Smoke a joint or take that pill. It really makes no difference to a person who is in pain. In the end, it is only about what works.
I wrote to Bella about the above quote from Aldous Huxley. I explained that although I have always loved this quote, I used to struggle with the “changing oneself”… but now I wholly believe in it. To change is to grow! It is not to assimilate or be weak. I had to learn to change to make myself a better person for this world.
Dearest Bella responded, “Wonderful, the best life lesson.”
Thank you, Bella. Your response somehow allowed me to encompass my hopes and dreams into a new cemented reality not only for my chronic illness world. I can fit into a real life that I face with all its complications and all its heartaches. The ups, the downs, and the unfairs! The winding roads, the detours, and the defeats.
Plans have a way of falling apart, never coming together as expected. I can learn to endure, I can learn to be ready. I can hold my head up and walk in grace. And. The most beautiful part … I will hold out my hands and those who grasp them I will welcome, and we will walk forward together.
I was sent this song from The Cosmic Gypsy herself! So while I focus on self-care and listen to this wonderful song daily, I want to send out positive vibes to this amazing blogger and all those that I know! Woman, female, soul survivor, holy water but most importantly a friend!
I have no more words…
I have been battling the last week but am recovering now. My husband only left my side to work. He made sure I never went without, that my cell phone was near so I could call him, and he sat in bed with me when he was home. I am so behind on reading my blogging community’s posts, apologies. Please bear with me while I continue to heal from this bought of costochondritis.
P.S. Thank you, my love, for sitting in the light AND the dark with me.