#theyjustdon’tunderstand

so today was an emotional roller coaster to say the least. I spent the better part of it on the phone with my insurance company trying to make right a wrong….these things only make my anxiety, pain, ache, and nerves worse. I was able to get out the house to the chiropractor ,which was interesting since my regular doc was out and he had a fill in…the fill in was too rough and almost barbaric in his approach… even after I was explicit that I was in a full body throbbing pain..it is funny/frustrating/upsetting how medical professionals of all kinds lack the empathy and basic human compassion skills that we as patients expect from them…yes they look you in the eyes and nod but they are not really listening, because if they did, they wouldn’t do and say things that are the exact opposite of what you just said… I find myself thinking internally “am I talking to myself…did you just hear anything that I just said” ??

the more I try to come to grips and accept the “new” set of circumstances that this illness has rendered my body….the more frustrated it becomes for me to explain my condition to those who do not have it…I mean it is hard enough for me to wrap my brain around what is happening because on any given day my body tricks and fools me… but trying to explain my experience to anyone else is almost an exercise in futility… even to other people who have pain of a different sort…not to take away from their experience… but fibro is a beast all in itself and you may as throw all ration behind because this disease/syndrome whatever you want to call it….makes no damn sense…

the fill in chiropractor gave me the standard sales pitch of pushing this supplement and that natural remedy, vitamin , treatment saying this illness is curable…I nearly laughed through the damn tears…I have heard these words so many times at this point…. I can recite the song…literally, if I have a penny for every damn time someone has told me all you have to do is (fill in the blank) I would be rich…. literally!!!…..I have literally spent thousands of dollars on everything under the sun literally working my ass off (losing 125) lbs with the thought that if only I lost weight, cut gluten, dairy, soy this that and the third thing out of my diet… I would get back to the man I used to know…I mean I have detoxed, fasted, starved, juiced, ….. and the pain, ache, fatigue is still here…. there is no cure for this… and trying to mentally and emotionally balance keeping hope alive while trying to keep it real leaves me with a black hole of despair that is never filled…everyone thinks they have the answer, just do this or just do that… my mom wants me to move back home because that will make it better….but you know what….what will make it better is if I could not deal with this crap at all…what I want is to get back to my real self again.. that alone will make this better … but I have to come to grips with my reality and the reality of it is that I am here right now in this place in pain, fatigued and feeling like crap 27 hours a day 7 days a week, able to do 1/8 ( and that is an overstatement) of what I used to do….and it sucks.,.. but I am alive and there are people enduring things worse than I am.. so I deal with that thought too and some days I have faith and hope and some days I hurt like hell and I feel tired and worn out and depressed… and I lay in bed numb, unable to feel my legs, and I pray for it to all go away…. if the doctor’s and therapists and insurance companies could walk a mile in my body, just one day…. this disease would have the advocacy of heart disease and there would be a cure… but for now I have this blog.. and I have my poetry.. which very soon, will be a book…. and soon once my insurance gets it together, I will be able to see my therapist again to help me learn how to deal.. deal with the body and manage this illness one day at a time… not expecting perfection or a cure, and not expecting to be the man I used to be or compare myself to yesterday.. but not lose hope and not lose faith and keep on keeping on….

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