Wow it's been awhile. I'm in no mood for updates right now, but I thought I'd post something special....
I came across this letter on a website that I often poke around at. It made me cry because of how true it rang with me and what I'm going through. I'm sending it to everyone I know. It was written by Ronald J. Waller and published on www.fibrohugs.org. I think I may end up writing my own version, but for now, maybe this will give insight to a lot of people just what I deal with on a day to day basis:
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
- Current Mood: blah
Lots and lots to update on. I've had A LOT happen in the last month or two....
( Under the cut to save some space and for those who don't really care....Collapse )
So, I need to work on crits, the novel I've got assigned to me at LP (once the contract comes in), style sheet for A.C. for domy, and my own writing, on top of putting in 45 hours/week at work. Wish me luck. I'm sure I'll need it. :-D
- Current Mood: sore
( Complaining under the cut for those who are like me and are tired of hearing it. Too bad I can't shut off my brain. :-PCollapse )
So, Shiloh turns 5 today. I hate Time right now. It flies by too quickly.
HAPPY BIRTHDAY SHILOH!!!
- Current Mood: blah
Your Word is "Love"
You see life as possibility to form deep connections with a few people.
Relationships are the center of your world, and you always take time to bond with those you love.
You are caring and giving. You enjoy helping those you love.
And when it comes to romantic love, you feel passionately ... even in a very long term relationship.
- Current Mood: content
Because being blocked is like being in hell.
Every morning I wake up and stare at all of my files. All of the unfinished works screaming my name, begging to be finished. I open one that seems to have my attention the most and stare at the screen. Trying to pull the words from thin air is like pulling the flesh from my bones. Pure agony. Because, the words will not come. So, I then close the files and walk away from my computer.
It's probably been a little over a month since I've written anything. But, it feels like 10 years. I feel like I've abandoned my characters, or that they've abandoned me. And still, everyday I open up a file and everyday I can't find the words. It sucks, to say the least.
- Current Location:Home
- Current Mood: Blocked
- Current Music:Mandy snoring in the next room
Okay, enough ranting. My goals for this week:
I was going to get a start on this tonight. I got my music set and ready to go, opened up all the programs I need, and just as I was sitting down, I start coughing. I've been fighting this head cold for more than a week. I have no voice right now and I'm exhausted but I was determined to not let that get me tonight. But, the coughing persisted. I drank my weight in water. Had a popsicle, hoping the cold icy-ness would calm the mucus down in my throat. Of course, it didn't. I'm sitting here and start coughing so hard I throw up all over myself. Lovely. I jump up and run to the bathroom with purple liquid all over my shirt and pants. I'm not sick. It was all mucus that needed to come up. But, I now have a horrendous headache and need to lay down. So, these will be given attention starting tomorrow. *sigh*
- Current Mood: annoyed
Mandy asked me to start writing. It was a very random and odd request coming from her, but she is random and odd at times. When I asked her why, she told me "Cuz it's something you love to do." She told me to imagine my book being done and published and it will happen. I told her that I didn't think my writing was good enough. And it's true. I don't think my writing is good enough to get published. Yeah, I've had a couple shorts published but a novel is an entire different matter. *shrug* I dunno.
And, here I am falling asleep again. I guess I should check on why Cora has been in the bathroom for 20 mins.......
- Current Mood: sleepy
Normal is very unnatural, in my opinion, which contradicts #1 from dictionary.com. Conforming to the standards of others isn't natural. What's natural is to be yourself despite what others think, right? So how could "normal" be "natural"? This is the dilemna I've been facing as of late.
On Friday night of last week, my sister Jess came in from Dayton (she finally got a car and a license! Hooray!) and we went to a local bar called Bleachers. My sister Kelly, my cousin Nicole and her boyfriend Matt, Jess, and Mandy all were there. It never occured to me that my family would feel uncomfortable around me and Mandy. After all, my sister Kelly brought her girlfriends around to family functions and it was never a problem. My aunt and her partner come to family functions too and it's not a problem. So why would anyone be uncomfortable around Mandy and I. And it's not like we're sucking on one another's faces the whole time. The most we did was hold hands. And yet, I got the distinct impression that Nicole was not comfortable around us. She looked uneasy whenever Mandy would reach for my hand or vice versa. So now I'm at a loss. I've never dealt with this before and I knew it was bound to happen but still. Mandy even warned me when we first got together. She said that being a lesbian couple was a lot different than being in a heterosexual relationship. I laughed at the time, thinking, "How on earth could this be different? Especially when it feels much more 'natural' than being with a man?"
The rest of the weekend was spent in constant pain. I had flare up after flare up and I'm still feeling horrible. I have an apt on the 29th with a specialist so hopefully he'll be able get me somewhat fixed. My biggest problem right now is energy management. I have to remember to take breaks often if I'm doing something that requires constant standing or lifing. I also have to be careful not to overdue it in general. If I overdue it in the morning, by mid afternoon I can hardly move. When I was a stay at home mommy, I took naps regularly and spent a lot of time relaxing when I wasnt' feeling well. Now that I'm working, I seem to have less energy and am tired more often.
So, here's my goals for the week:
Get 1 crit done.
Research "natural" ways to deal with pain as opposed to poppin pills.
Spend time with the munchkins.
Let's see what I can get done........
- Current Mood: thoughtful