Fibromyalgia, For Many It Is Not A Life, It Is An Existence

exist1I was quite young when I was diagnosed with Fibromyalgia. I was initially told I had a chronic condition called Fibrositis. Of course as time marched on I would come to know this was one and the same as Fibromyalgia. I was sent to a Neurologist in my hometown in California who told me he thought that is what it was but wanted to send me to Scripps Institute in La Jolla to have the Neurologist there further examine my case. After a long and detailed appointment, the chief Neurologist agreed: Fibrositis (Fibromyalgia) with Chronic Fatigue Syndrome. Little did I know at that moment my life was going to change in the most drastic way possible. I had no idea the force that my body was dealing with and how unforgiving and downright harrowing an experience this journey would be.

For many years I did fairly well. I was a Mom to four young girls and my 1st husband worked out of town much of the time. I never missed a beat between school activities, soccer, music, etc. I would often over exert myself, but that was just par for the course. Back then sleeping was not an issue at all.  I would sleep all night and do it all again the next day. I was on a good medication cocktail and though I was in pain much of the time, my cocktail could handle what my stamina could not. I truly believe living in a very dry, warm climate was a huge asset as well. As sad as it is, I did have many people… family by extension mostly…. that would talk behind my back. I was being a ‘drama queen‘. I was an ‘attention seeker‘. I was ‘faking this thing with a pretend new and trendy illness‘. Trust me, I heard it all and then some. Sadly the trash talk would live on through the years. However Karma is lovely and I know people reap what they sow. I will let God handle that one. The truth of the matter is: I had no clue how bad this thing, this Fibrolmyalgia would get, and that eventually it would be one of the things that disabled me.

Fibroexitence1Moving from sunny, warm and dry Southern California to the damp Blue Ridge Mountains of Virginia was one of the biggest mistakes of my life. I regret it everyday for a multitude of reasons. One of those reasons is my Fibro precipitated into an ugly monster. I kept on my cocktail but it only worked for a short time here in Virginia. I was blessed to find a good Doctor straight away. He gave amazing trigger point injections. In fact Fibromyalgia was his ‘baby’ of sorts. Though he was a middle aged man, he actually had Fibromyalgia. To up the ante, he had a new patient from the San Joaquin Valley who could tell him all about Coccidioidomycosis better known as Valley Fever; something he knew of but had never met anyone who had first hand knowledge of. He also truly cared which is a great plus, actually scolding me (in a loving way) one time when I let a muscle spasm get out of hand. He said, “Don’t ever let a spasm get that bad again. You call in right away for an injection the next time your neck gets this bad.” We were both equally happy with our Doctor/ patient relationship.

With Dr. Alexander, I had a Doctor that was good, was passionate about Fibromyalgia and he had someone with first hand knowledge of Valley Fever. It was a win-win situation, as strange as that sounds. It worked!

With Dr. Alexander, I had a Doctor who was good, was passionate about Fibromyalgia and he had someone with first hand knowledge of Valley Fever, something he had always been interested in. It was a win-win situation, as strange as that sounds. It worked!

 

Sadly when I moved back to Virginia from a very brief move to South Carolina, Dr. Alexander had retired. I kissed many frogs but found only a few mediocre Doctors in the process. Fast forward and after a painful divorce, I finally got into pain management several years ago and as I wrote in a blog a few articles ago, I now have my medical dream team. This is a good thing considering my Fibro and spine issues have never been worse. I have a team that I respect and in turn they respect me. I finally won my disability case. All should be ‘right’ with the world. Except one thing: I am disabled in body, but inside I am alive. I  am the true blue free spirited girl. I am full of life and vigor. My body, however, has other things to say. Being able to do a few things here and there does not make up for all the things I have lost on a daily basis. What I really have is summed up as an existence. existence1aaaEvery day when I wake up, I put no expectation on how I will feel. I do not ‘set up’ the day for feeling bad. I want to send positive affirmations to the world that it will be a ‘good’ day. Sadly I get maybe 1-2 ‘goodish’ days a month. Let me explain a ‘goodish’ day. A ‘goodish’ day is not a good day. I do not remember good. Good is without pain. It means normal: no pain, everything is fine and everything is working like it should. I gave up on that concept a long time ago. It  is what it is. Now I put on a great mask for others (besides Paul). I try to keep that happy face on unless I really, truly am ‘in trouble’. I have worn masks more times than I can count. If you count up the ‘goodish’ days I have, I get the equivalent of about two days per month. Yes, that is less than 2 weeks per year. That means that for 11 1/2 months I am struggling with severe pain, insomnia, muscle spasms, migraines, crippling anxiety, brain fog, numbness, hands that do not work and drop 50% of everything I pick up every day, feet and legs giving out, Fibro flares, senses in overdrive, horrible and unforgiving IBS (noting after an IBS flare my stomach feels as if it has been sucker punched for a day or two), unforgiving fatigue, allergies that are off the chart and so much more I could keep listing issues. We all know the score. Also, note the approximately two weeks of ‘goodish’ days I have per year, I am not free of these woes, they are just lessened to a point that I don’t feel encompassed by them. Imagine for a moment if you do not have Fibro (or if it is not progressed to this point) having only two weeks total a year that you feel bigger than the malady that controls your life.  The worst part, however, is not the dismal issues I listed about. No, it is the judgement from those who are supposed to love me unconditionally. Some people in said group are unforgiving and nearly hateful. It is sad beyond words. My existence is hard enough without having this added stress and heartbreak. People question why Robin Williams took such extreme measures but when those who are supposed to love you most in the world turn their back on you, why should anyone even give a rip?

People wonder why such a big, well loved celebrity such as Robin Williams could feel so desperate to do something so extreme? When your own loved ones judge everything you do, call you unfounded names and listen to gossip of others, why should I care about the shell of an existence I have. I am holding on by my fingernails as it is.

People wonder why such a big, well loved celebrity such as Robin Williams could feel so desperate to do something so extreme? When your own loved ones judge everything you do, call you unfounded names and listen to gossip of others, people wonder how it can all go so wrong. Very easily.

This blog post is not meant to be a pity party. In fact it is anything but that. It is simply meant to be real and honest. Life for many with Fibromyalgia is not life but a mere existence. Do not get me wrong, nonetheless, I find joy in the little moments: that first taste of coffee in the morning, the changing leaves in Autumn, a sunny day, friends I have made all over the world and most of all my family that has stuck by me including my two perfect Grandchildren who give light to my world. They make my life worthwhile as does my amazing husband!

Life is hard under  the best of circumstances. For those of us battling chronic illness, who have decades of pain and stigma as well as loss of dreams to contend with, it is a struggle that words cannot describe. When your dreams are waylaid by such a cruel condition as Fibromyalgia, the collateral damage is mind boggling. It robs the Fibromite of more than anyone can begin to comprehend. It turns a life into an existence and can leave the person feeling hopeless and empty. Fibromyalgia is not just a word, it is a mighty force! Until next time, K.

Existence4

5 thoughts on “Fibromyalgia, For Many It Is Not A Life, It Is An Existence

  1. The first time I read this I had recently been diagnosed with fibro after 7 years of different doctors, tests, prescriptions and I had many of the symptoms and experiences you wrote about. Today as I reread this like it was the first time due to cognitive memory impairment. I feel like I’m reading my story. To make light of it, watching old reruns of my favorite movies or tv and feeling like you’re watching new episodes for the first time is kinda cool 🙂 I do not have such a severe issue with dropping things as you do, but my hands and legs are shaky and unsteady most of the time. I can’t wah my own hair. My kids homeschool online so I get to spend a lot of time with them! I love it! I try to focus on conversations with my kids and I have gotten to know them so much more than I ever imagined. I have 2 girls ages 12 & 15, my son is 9. They give me so much joy and are the only reason I want to wake up in the morning. They give me a reason to want to live and I needed that. I hate my disability and the way it took over and controls my life. For many years when my kids were younger, all 3 were playing a different sport for every season; football & cheerleading, basketball, t-ball, soccer, I was in college, working two jobs, hiking, caving, repelling, rock climbing. I don’t know how everything changed so fast. I’ve been in pain most of my life, but learned not to complain, I thought it was normal. In 2010 I married the love of my life and graduated college with high honours earning my Associates Degree as Medical Assistant and Phlebotomist in May 2011. I could not wait to find a job and use my degree. My health, this fibro, monster, it took my dreams away, took my life away from me. No cure, no help; you are right, just an existence. I’m a burden to the family I love. I’m holding them back from all the stuff we use to do. I am 34 years old and I feel crippled, hopeless, helpless. I rely on a cane to walk sometimes.. I wish I could just have my life back. The pain wasn’t so bad, I was use to it. Fall of 2008 I found my strength and independence with help to get out of a 9 year abusive marriage. I wasn’t controlled anymore, I was a better mom. We were happy with our new life. Where did it go? Today my muscles are so tight it hurts, I’m stiff. It hurts to move and try to stretch. I’m exhausted from riding about an hour in a car the entire day 2 days ago and walking about 50 yards to sit and watch a soccer game. I know, how can that be exhausting? It will take a few days to recuperate and feel less exhausted. Sometimes I over do it and I’m in bed for a day or two I don’t understand it myself. It doesn’t make any sense, it sounds crazy. I’m living it. Living it I’ve lost control of my body and my life. I know how you feel and I’m here for any of you who would like to talk or just chit chat or can advise me in any way. Thank you for sharing all the information on your website. I have learned so much. Most importantly that I’m not the only one like this.

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