Memoir of my life as a Fibro Fighter
They say writing is the healing for your mind, body, and soul. Today I challenge this statement by saying healing for me would entail having unbiased support, and complete understanding of how I feel as a fibromyalgia fighter. While I know this is merely unrealistic expectations, (unless you are fighting this disease) understanding completely how fibro fighters suffer for the unaffected person (s) is beyond imaginable how we “fibro fighters” feel physically, mentally and physically on a daily basis!
My awkwardness – Forgive me if I step heavily on your toes or run into you several times within a crowd, I‘m not purposely bumping into you. My equilibrium is something that you and I no longer share. I have no longer have control over my muscle weakness. Moreover, walking behind me while I’m on stairs may require for you to be patient. If you only knew, days like this require for me to take life and stairs one step at a time.
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My Depression - I’m interested in having an accurate count of how many people actually suffered from Fibromyalgia as well as the many overlapping illnesses that plague us severely. However, you can describe it or associate a fitting word to fibro as you like. Here are a few to help summarize what I feel continuously: chronic, severe, unrelenting, or unyielding, pain in which is it any wonder why this wouldn’t cause depression? Nevertheless, “its” result equate to the multi overlapping symptoms of fibromyalgia. There are days I feel like giving up, I desperately try to find ways to keep myself above the shoreline and NOT fall below and drown. Yes, the days when I would rather stay in bed, in the house, or simply willow away are plentiful. However, YOU can make a difference with your genuine concern, comprehensive understanding, and your willingness to not only care, by reaching out, but to sincerely help. Believe it or not these differences will help pull me back from the brink of indescribable frustrations, pain and anguish. Yet your spiteful remarks, and your destructive words can and will help, tip me over the edge. Therefore don’t be surprised when you receive a ball of fire unraveled with a tongue lash! Unfortunately chronic pain, fatigue, frustration, overlapping illnesses, does not turn the check.
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My Fatigue – I’m not “just” tired, I’m often in a relentless condition of exhaustion. I desire to participate in physical activities, but sometimes, I can't. Please don’t take this personally However to your surprise, you could see me shopping in the mall today, but tomorrow, I may not be able to help you with yard work, or shovel snow, or even think clearly. It isn't because I’m lazy or I don't want to, I’m likely, to be paying the price for stressing my muscles, ligaments, or joints beyond their physical capability. It doesn’t take much for me to overexert, and it definitely isn’t done on purpose.
My Forgetfulness – Fibro-fog, short term memory loss, is what it is called; this is what many Fibro Fighters suffer from. Although, I may not remember your name, I do remember your face. Even thought we had a discussion just minutes ago, don’t get offended, or think I’m joking I may not remember what you said, or even any important details. This is why I invest in journals to carry around; trying my best to capture important, and intimate details of a conversation, or situation. I’m desperately not trying to forget what just happened, “the past”, and carry my notes, my inserts, my writing, “the future” to help me remember what I need too! As a reflection back my journal is a “safe keeping” to these precious “conversations” that I need to fulfill the empty pages of my brain! Please don’t insult my age, this simply isn’t a factor. Regardless of anyone’s ago, fibro-fog attacks all genders and ages, but can be linked to sleep deprivation. Additionally I don’t have selective memory, God knows I WISH I did. There is nothing more frustrating being able NOT to remember. The reality is some days; I merely don't have what you have and that is “short-term memory”.
My Good Days - If you see me smiling and moving around and I’m functioning normally, don't take for granted I’m well. I may be having a good day, but I’m not cured. I fight and suffer from a chronic pain as well as a fatigue illness with no cure in sight. However, I will have my good days, weeks and maybe even months, yet I still hurt to some capacity. In actuality, good days are what keep me going.
My Intolerance – You may not be able to understand, then again maybe you can, but in case you don’t please realize from extreme to the next, my tolerance for certain things are null and void. You may see me sweat profusely because of the heat, and/or humidity. Yet you may see me shiver uncontrollably when I’m cold. You know the internal thermostat we have built inside of us? Well mine is broke, and doctors, specialist, nurses, or scientist have no idea how to fix it or me! Either way I’m embarrassed by both, so please don't feel compelled to share this inadequacy with me. I’m fully aware of what is going on with my broken thermostat and what I’m feeling. Now, hopefully you understand too!
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My Need for therapy - Getting a massage once a week, or even twice a month, isn’t something to “envy” or even wish for. Why? Here is some food for thought, have you had a paper cut before, you know how painful those can be, think about this: how would a massage feel if you had the pain of paper cuts all over body during the massage? Secondly, have you burned yourself on a heated iron, eye of a stove, or from fireworks? You recognize this pain and understand clearly how painful and severe this can be. How do you think a massage would feel while having this type of pain? Lastly have you had a charley horse in your arm, leg, back, or foot? Imagine that pain all over your body while getting a massage. Your massage isn’t my massage. Sometimes it can be painful pleasure. The pleasure “sometimes’ come when the pain is massaged out of my pain pockets (muscles), even it is only a temporary basis.
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My Pain – Pain is pain right? WRONG!!!! My pain is not your pain. It is not caused by inflammation, pop a pill and in 10 to 20 minutes it is gone. I can’t work my pain out or shake it off. This pain doesn’t only hurt in one place. It isn’t a pain that is region specific within my body. For example, today my shoulder could hurt, but later, it may be in my foot or my neck, perhaps my lower back, or even my chest. My pain is caused by improper signals sent to the brain, possibly due to sleep disorders, and other overlapping illnesses related to Fibromyalgia. It is not well understood, but it is INCREDILY REAL and VERY PAINFUL.
My Sensitivities – Can and will send me into a complete tizzy. I absolutely can't stand it! "It" could include but not limited to: bright lights, cologne, high or loud pitched noises, perfume, and/or odors. Fibromyalgia has been called the "aggravating everything disorder." I ask you to try and understand my humble decision to decline certain invitations, or if I need to leave suddenly, to no fault of yours, my surroundings has caused a Fibro-flare.
My Stress – I nor my body handles stress well. Stress is the onset to fibro flare ups! You may witness me, having spasms (twitching), I quickly develop burning sensations (where it feels like I’ve been set on fire), and the chronic pain is all over my body, it’s heighten stage is over the common number of the popular medical pain chart of 10, if I could say double the number or even triple the number I certainly would. At this point the lethal narcotics may or may NOT work. Sometimes, not being able to work fulltime isn’t a dream, or a wish, or a sign of being lazy, for fibro fighters, it is reality. It is dishearten to be called a “faker” or told I'm lazy, or even “crazy” in which this makes fibro fighters work 7 times harder to prove a point, yet we literally pay for it at the end of the day, by laying in the bed, on the coach, or on the floor unable to move, all just to prove a point or NOT to appear as a faker, lazy or crazy. Sadly for the next 2 to 3 days our bodies are at a point of no return until our muscles, tendons, joints, regroup! Understanding fibromyalgia is merely understanding that stress make my symptoms worse and can incapacitate me completely.
My Uniqueness - Even though we “Fibro Fighters” have been giving the same diagnoses’ we are not alike. This means every fibro sufferer may not have all of the symptoms mentioned above, but could have troubles not mentioned or we could share 1 or more of the same symptoms mentioned in my memoir. The reality is no two fibro fighters are the same; my anguish is NOT the same of someone else. Ironically this is what makes us all “as one” and simply UNIQUE!!!!
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My Weight – Is a personal yet private fight. I may be skinny but next month I could end up “fat”. Either way, it is not by choice to be either, we all want the perfect median right? Unfortunately it doesn’t work that way. Medications I’m on will make me either gain or loose weight; it may increase of decrease my appetite. Nevertheless due to the multi facet of additional illnesses related with fibromyalgia, weight is surely to be a problem for me and other fibro-fighters. Hearing or being told our bodies aren’t perfect as to our “pain”!
Now that you have learned about me I ask will you lay aside your prejudgments you have or had about me and tell me, are you ready to fill my shoes?
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