| Yup, its long, so shut up and get started then HAHAHA While getting the kids to school this morning, I figured I would check mail since I haven't been able to in a couple of days. First I saw the VERY NICE replys from that "one word" thing. I even cried on Jans and Peaches. Then I felt bad and thought how often I am so ill that I really can't give 1/100th of what I would like to to my online and offline friends and family (although I am sure some are happy as you have to take my in small doses) So, anyway, I said if nothing else, I am going to go through my personal emails DAILY if it kills me. (Ok, maybe every other day). So I got led to myspace from a friend I got there, then caught one of her blogs which just described MY LIFE! It so described my day even just yesterday, I started crying (** read her post at the bottom of this mail**) While writing to her to let her know that her words are important and help so many of us (something I learned from you all, such as Peaches, that reminded me that my rantings do matter...sometimes...haha), I saw a blog from one of HER friends and read that. THIS is what she wrote and I could not write it better myself if I tried. God knows how often I have tried too. Saturday, February 02, 2008 A Letter to the NORMAL people Current mood: drained Category: Life The Letter to Normals Category: Life 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…. If you know someone that suffers a chronic illness online or off and care about them at all, you should read and reread those words. I have suffer ulcerative colitis that has not been in remission longer then 3 weeks at a time for the last 7 years. If it is letting up at all, I would hardly know as a symptom of FMS is IBS. So either way I get it I send you this as I have wanted to for a long time. I used to send something about once a month or so until just too many people tell me "why do you talk about that, its depressing". Or "how are you today Dee? Oh, you sick again? Well, never mind, I have to go anyway, I just wanted to say Hi" There are so many that suffer day to day. Maybe not from an illness but just from life. We ALL have bad days Well here is the post that started it all. This describes my last 2 days so completely. February 29, 2008 - Friday Cramming A Week's Worth of Work Into a Day Current mood: rushed When you have a chronic illness like fibro, it steals away so much of your life. An hour, a day, a week, a month, a year.........25 years. When I feel the pain let up a bit, I cannot seem to control myself....I try to hurry like mad and get everything done that I've waited to do during the flares......and of course, with my unforgiving, relentlessly crappy excuse for a body......within a matter of days or weeks, I crash and burn. Always. I try so hard to pace myself, and sometimes I manage to do it, so that I can wake up the next day and actually feel like I might be able to walk that day....or do a load of laundry....or take photos of my antiques so I can post them on my online shop.......or pack up the items that sell and take them to the post office.....or swiffer the floor, or vacuum, or clean the bathroom, or play with the cats, or cook a meal, or do the dishes. Every single thing I do, every single move I make, every moment of activity adds up.......and I know if you have fibro you know what I mean.......every activity has a price......and when you run out of energy........you are DONE FOR THE DAY WHETHER YOU LIKE IT OR NOT. It's not only when the pain comes, which is like an hourglass......you turn over the hourglass when you start your day and you watch as the sand trickles down.....you think to yourself....."hurry, hurry!!!! You are running out of time, hurry up dammit!!" So you think, what is the most important thing I have to do today?? And you think of 20 things........knowing that there is no way in hell you can do even 10. But you put on your shoes with your special arch supports and take the handful of meds that you take every day just to keep the pain under control, and the blood pressure down, and the metabolism going, and the depression from overtaking you.........and you get up and GO. (hurry, hurry!!!) So........here I am......I've gotten 2 things done today so far and I have 20 more things to do and it's almost 4pm. Deep down, I want to cry, but I don't cry.....I never cry anymore. I was done crying years ago. I just simmer........on a low burn, deep inside........anger & frustration simmer inside me, buried way down. Even after all this time, all this time to get used to this life of mine that is constantly interrupted by pain, pain, pain, pain, pain, PAIN......I am used to it but I never stop being angry at it. I'm a type A personality stuck in a piece of shit body........not a good combination. I'm a person that cannot stand to sit still and do nothing, yet I am in a body that forces me to sit still and do nothing so much of the time. That's why I try over and over and over to out run the pain. I'll probably never get it through my head that I can't out run it......I mean of course I know I can't, but still......... It's like a competition. Who will win today.....ME? Or Pain? I'm a fighter like my dad......and I'll never give up, and I'll never give in. I'll always try to squeeze one more drop of LIFE out of each day.....it's just the way I am. And when the pain kicks my ass and knocks me on the floor, I'll simmer.......and wait.......wait for the next reprieve, so I can get up and do it all over again. Myself...right now I can barely move my hands. The pain is so incredible it woke me an hour before the clock went off. After only been asleep for 2 hours. While almost dozing again, then my friend the bathroom beckoned me. The only relief I have found at all are steroids but yet I am so tired. I just want one hour of sleep. If I take the steroids I will not sleep at all. Terry will be up soon. Thank goodness he is sleeping in today as I don't know what I would do another day if he got up at 6:30a bouncing off the walls ready to play. Yes, I love to play with my son and thank God I was allowed to complete my family I so wanted for the last 20 years. Yet after a weekend of washing, doing hair, cleaning, fixing computers, do this and that, why didn't you call me back, you are always too tired to visit...I just have nothing left to give. Not even to my precious angel There are many "Invisible Among Us", many. Please THINK before you speak when someone is not able to do what YOU want them to do. Or you see NOTHING wrong with them. Or THEY ARE SO NEGATIVE today. You know, the world is not all about you, it just isnt. Understand that I will not go to your house as long as you only have one bathroom. I will not go out with you no matter how many bathrooms are there! If I cant make it 10ft to my own bathroom without an accident, do you truly think I can make it til we pull into a McDonalds, I find the bathroom then get all my garb off? Do you think that you are more important then my own kids? That if I go to bed crying because of all the things I could NOT do with them, you are more important? No...but, YOU ARE JUST AS IMPORTANT TO ME! I miss going out, even to walmart (my fav store of the decade). I would love to go out to dinner for my upcoming 20th anniversary. I would love to take the kids to the museum this weekend. I would love to call you and laugh and joke and talk about what was on TV last night. I would love to invite you over for dinner and a movie. I would love to make plans with you for NEXT WEEK and actually follow through with them. I feel lousy I forgot your brithday...again. If it helps you at all, I forgot AJ's FIRST birthday. Do you know now I just can not? I don't want your pity, just your understanding. We all do as we give to you "normals" I love life, I love this world, I love all and I truly would die for this world if it meant it would change. Thank God for the angels he has put here, I would die without you. Thank you for your words, your laughs, your tears, your joy, your emails, your phone calls, your pictures. Thank you, although sometimes I just can not speak as it feels I am going to puke if I open my mouth, or I am just plain tired, or I cant think and don't want to embarrass myself...thank you for STILL calling me, for still letting me know how your kids are, how your day was, inviting me out and still remembering me. Thank you for not smothering me with your pity, for listening to me and letting me listen to you. Remembering that I too am human. Thank you -------Original Message------- This is a message from dee: dee thought you might enjoy checking out this blog on MySpace.com! You don't have to join MySpace.com to view the blog. Just use the link below. What is MySpace.com? MySpace.com is an online community where members share photos, videos, blogs, and interests with a growing network of mutual friends. Create a profile FREE on MySpace and start connecting with old and new friends! Find out more about MySpace: ------------------------- | ||
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Monday, March 3, 2008
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