I'm starting to get really tired of people not believing in my diagnosis or in my pain. I really don't enjoy taking all this medication everyday
I REALLY AM TIRED ALL THE TIME
I REALLY DO HURT ALL THE TIME
The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….
Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….
Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand….
Copyright of www.fibrohugs.org Written by Ronald J. Waller
_x_ recurrent flu-like illness
__ recurrent sore throats, red and injected
__ painful lymph nodes under the arms and neck
_x_ muscle and joint aches with tender and trigger points - up to 18 of them
x__ night sweats and fever
_x_ severe nasal and other allergies
__ irritable bowel syndrome (IBS)
__ weight change - usually gain
__ heart palpitations
__ mitral valve prolapse
__ severe PMS
__ yeast infections
_x_ rashes and itching
x__ uncomfortable or frequent urination
__ interstitial bladder cystitis
__ chest pains (non-cardiac)
x__ temporomandibular joint dysfunction (in the jaw)
_x_ hair loss
x__ carpal tunnel syndrome
_x_ dry eyes and mouth
_x_ severe and debilitating fatigue
x__ widespread pain
_x_ other chronic illness(es) usually present (like diabetes, hypoglycemia, asthma, lupus, ms, etc.)
_x_ numbness in the limbs, not painful like pins & needles
_x_ painful swelling in the hands, legs, feet, neck
__ GERDs (gastro-esophageal reflux disorder)
__ “growing pains” start in childhood and teens, continue into adulthood
_x_ widespread body pain during/after physical exertion
COGNITIVE FUNCTION PROBLEMS:
__ attention deficit disorder
__ spatial disorientation
__ calculation difficulties
_x_ memory disturbance
__ communication difficulties (problems speaking, confusing words)
x__ anxiety and panic attacks
_x_ personality changes, usually for the worse
_x_ emotional lability (mood swings)
OTHER NERVOUS SYSTEM PROBLEMS:
x__ sleep disturbances
x__ changes in visual acuity
x__ numb or tingling feelings
_x_ burning sensations
x__ light headedness
x__ feeling 'spaced out'
_x_ frequent unusual nightmares and disturbing dreams
_x_ tinnitus (ringing in the ears)
__ difficulty in moving your tongue to speak
x__ severe muscle weakness
_x_ susceptibility to muscle, tendon, ligament injury
_x_ intolerance to bright lights
_x_ intolerance to alcohol
_x_ intolerance to sound
__ extreme sensitivity to medications and their side-effects
_x_ alteration of taste, smell, and hearing
_x_ inability to achieve stage 4 restorative sleep
_x_ morning stiffness in the muscles and joints
_x_ restless leg syndrome
x__ muscle spasms
_x_ muscle quakiness and shivering during/after activity or exercise
_x_ sleep paralysis (related to stage 4 sleep deprivation)
So now tell me theres nothing wrong with me!