Hello! I my name is Leslie, I am a new member, I wanted to introduce myself and start by telling you a little bit about my story because I don't want to scare anyone away. I was diagnosed Aug 2009, two months before my second husband of one year was deployed to Afghanistan. I was a perfectionist and known as a strong independent woman all my. But the day a doctor so callously turned her back to me and said, "first let me say, there is no cure, you have Fibromyalgia a chronic pain disease." I felt like I was hit in the head with a big hammer. I was dazed and confused then and I am still dazed and confused now.
Every day I feel like I live in an altered state of reality or nightmare. I truly thought I was going to recover and get my life back. I was in denial until 2013, I realized that my life would never be the same back to "normal" and I may never live a day without pain. I realized I wouldn't get decent night’s sleep or go to an event without having to leave gracefully because I am too tired to stay around and socialize like everyone else.
It finally dawned on me Thanksgiving 2013 when I read my family members social network pages, that "everyone" except me was invited to a Pre-Thanksgiving Holiday gathering at my own mother’s house. I was more than dazed and confused, I was shocked! How could this be? Me the fun sister and aunt not included? But then it dawned on me, no one calls me, no one invites me over or comes by to see me anymore. No one wants to "go shopping or to the mall" with me, or include me on the family vacations. Why would I think they would invite me?
So I said I will fix them, I will get my revenge. I will conquer this Fibromyalgia and be the best I can be. But every day and every night I lay there tossing and turning unable to sleep, because it hurts so bad and the pain is to much to it makes me cringe at the slightest touch. I watch the sun creep into my window and the moon shine through my blinds. By then it's late afternoon when I wake up, and my school work is behind. I'm too young not to remember what day it is or where I am going when I'm driving down the highway, I feel useless, am I just wasting air and taking up space, while I lay here dazed and confused in this place?
No, you are not just wasting air and taking up space. You have a remarkable gift of words and an ability to move someone very deeply in a few short paragraphs. I'm in tears from what you just said. Oh gosh, I needed to take some time away to wipe my eyes.
I know how you feel. And you wrote about it so beautifully. Maybe you aren't cut out to be x, y or z but maybe, just maybe you ARE cut out to be a writer, even if you can only write short bits every so often. And maybe an advocate? God knows, we need them! In fact, I have often thought that someone like Oprah should highlight our plight, so people KNOW and researchers KNOW and our families and friends KNOW. Your letter would be a beautiful way of highlighting our cause. Would you be interested in letting me use it to send to some people like Oprah, Ann Landers (the new one), etc.? If not, that is plenty okay. Just know that you have IT.
So, having said all of that, I've now stupidly exhausted my arms and need to rest for a while.
But welcome and thank you for joining us. By God, your voice DOES matter, and you DO exist, even if your spirit is like a genie squirreled away into a little lantern. You're here and we HEAR. Do not FEAR.
Hello Leslie and welcome.
Wow well said and I really understand what you’re feeling. The pain… That touch that makes you want to scream, the fatigue, a heavy feeling that takes over, but can’t ever sleep… The family visiting less, shopping is a thought, but never accomplished…
Im Glad you made it here, this group is awesome and there are many discussions here that will help you. I don’t have the answer, I wish I did. I do recommend that you try medications, until you find one that works, even to become half the person you were back when this began is success in my eyes…
Hang in there.
Thank you so much Petunia! Your words are so very kind, but do you think someone will read it other than here? A writer really? I always wanted to write my life story because it truly is unbelievable and so many people have been telling me to do it. Well it definitely is a thought, I am just laying in this bed. If a can type a few lines a day maybe I will be finished in a few years.
Thanks for the hugs,
Hello Leslie and welcome
I can see that your words have moved all of us. Nobody else could possibly understand the dark place this disease drives us to. The words...useless,a waste of space...the sheer desperation we feel. They're just words to most people but because we're living the same nightmare you are,we will ALWAYS understand. I've been leaning on these people here pretty hard over the last couple of weeks and trust me...there's nothing you could say to scare anyone off. We all battle to keep what dignity we have left and struggle with our self-esteem. it's totally unfair and it's ok to scream it out every so often. But when it comes to family and friends...unfortunately they'll never get it. I have a sister who's super supportive but she has big problems of her own. But that's rare. But we have this place and you can't get better than this for support. HUGS
Wish I had more time...gotta scoot(if "scooting" was actually a word to describe how I move.lol Wishful thinking)
Hang in there and keep sharing.
Welcome. One thing that I love most about this site is that when someone says they understand I really believe that they do. We all have different stories and circumstances but in the end we all want the same thing, understanding and compassion. I did not even tell some of my closest friends when I was first diagnosed. For so long before I was diagnosed, all I thought about was "getting fixed". As time went on and I had to come to the realization that there was not going to be a fix. That's when I started working of becoming comfortable with the person I was now. I had to let go of the guilt and the sadness. How do you live with the fact that you are going to be in pain everyday? I knew what the alternative was.
Who you were yesterday does not matter, yesterday is over. Who you will be tomorrow does not exist yet. Who you are right now is what matters, and if you ask me you sound like a very intelligent, motivated, special person. I can not wait to hear more from you.
I can not tell you how happy I am that I found this site, I hope you find it as useful and comforting as I have.
I am truely sorry you are not alone. You have a purpose as do we all. A young nurse asked me once why GOD lets people suffer. She is Catholic and I am Baptist by birth but spiritual by nature. I believe that people suffer to teach a lesson to someone either to that person or the people around them. I was also in denial but what I have figured out is that its ok. I suggest that you work on 1 thing at a time. I am unsure because I have never asked but it is my belief that fibro people are what my family likes to call "high strung" We are over controlling, over working, over stressing people. So in a way its like we have over worked our brains and all that stress set off a biochemical response. So in understanding that we can hypothesize that we can control some of what we feel. I have been able to control my pain with meditation or an enjoyable activity. Mostly video games everything else makes me to tired. Fatigue is not controllable for me anyway. Now the memory thing that is so easy to fix. I assume you own some type of IPad or cell phone. There are apps that let you record to them or key in information think of it as a flash drive for your brain. The brain is to busy or to tired to record and store the info you need. So use these tools to aid you in your daily life and stop stressing it just makes fibro worse.
Above all be kind to yourself. Teach your loved ones that soft huges are ok. Do things that make you happy. GOD loves you.
My heart hurts for you because I know exactly how you feel. It is the five stages of grief (Denial, Anger, Bargaining, Depression and Acceptance--and I'm sorry to tell you but you won't go through the stages just once.
Once thing I can tell you, it is really important to get counseling! If you've never done so before there isn't any shame in doing so now. Learning how to become the healthiest person you can be is learning how to be a responsible adult. You are going to a doctor for you body, go to a counselor for your emotions. Get someone on your side! Remember, you may not find the right one the first time, but keep going until you find someone you connect with. It can be the thing you do for yourself to help process and start finding your meaning and purpose - because that can so easily get lost in the mess of physical and emotional pain.
I believe each one of us has something to give, even if it is just one person. We can find that, we can do that. YOU will find it. You aren't alone.
Also, I've started a blog that I've been sharing with people and what you have been going through with friends and family is something that I've been struggling with a lot lately. Maybe my story will help you feel not so alone:
The biggest of hugs, because this time it won't hurt,