As the medication changed, adjusted the dosages, I still had to try to function. I still had two babies who needed me. I remember thinking 3rd grade math is hard. I had to relearn in order to try to help them. I give credit to my children for being patent with me. My husband resented the lack of financial help. He had it all. I understood. For me No job, no pay, no job, no insurance, no job, no respect, no job, no identity. Who am I now? I’m not a domestic goddess who gets to stay home and take care of the house and family. Half the time I could hardly walk around. It’s hard to take care and run a home for a healthy person. I just wasn’t getting it done. It fell on my husband. My mother helped with the children, they’d stay with her at my worst, I didn’t want them to see me suffer, they would have been afraid. I couldn’t always hide it. I’m very lucky I had the people in my life that I did. It wasn’t easy for my husband to watch me descend into madness. What was somewhat a strong capable woman, turned into a whimpering wining mess. I felt alone. Yet I prayed.

For my husband, he didn’t attempt to educate himself on fibromyalgia. He continued to work. He still had his life and seemed to go on with it without me. I felt, I feel he didn’t respect me any more. I was angry with him because he still had his life. I deflected my anger onto him. I hated that now he was stuck with me. The medical bills from tests, doctors and medication was adding up. We lived on a limited amount and did well just to pay the basic living expenses. The woman he married no longer existed. I had to find my self again. That although this disorder had disrupted and redirected my life. I just didn’t know how, or if. What future is there for me? I have been denied social security benefits. This is a fight that I continue to battle today. I have been on a roller coaster of complications from my meds. One didn’t react well with another, and substitute is not the same as equal to. Certain components of a substitute medication can react to other medications. The medications have made it difficult for my bowels to move. That created more pain and discomfort. They affected the health of my gums. With fibromyalgia I also have irritable bowel syndrome, restless leg syndrome, dry eyes, TMJ with my jaws. I have arthritis, chronic back pain, stomach cramps. Spasms in my legs and back. I have acute chest pain. Acute reflux disorder and my menstrual cycles were torture. I have severe migraines. I have a sleep disorder. Where you can’t get into a deep sleep which allows our bodies to recharge. So when I did fall asleep I would awaken still so tired. I’ve had days were I’m so tired that I just can’t speak. I am often confused. I can’t remember simple things. Fibromyalgia has taken my words, when I do try to speak, I can’t pull the word out that I want to say, or just loose my train of thought. So I can’t tell a long story because I’ll forget where I was going with it. I have become isolated because I am overwhelmed in crowds. I have anxiety and panic attacks. I can no longer drive out of town due to the anxiety. I forget how to get to places. My hair started falling out from the stress of just trying to keep up. It’s hard for me to type, I will invert letters and having to go back and fix each typo. So I’m not able to type fast.

I felt that I was the worst thing for our family. I couldn’t care for my children, my home, myself. I would be better off if I were truly dead and then the pain and guilt would all be gone. I still struggle with the depression. I love me some me, but I do sink into some dark places at times and wish it were over. I have to hang onto the fact that my children need me, whatever is left of me; they love and still need that me. I no longer feel I need validation from my husband that he believed I was sick and he still loved me. That it hurt him to see me suffer. That at times he missed me. Yes it would make me somehow feel better to know he believed in me. That he could see how strong I try to be and how hard I fight this every single day of my life. I have come to understand that this is my battle to fight and I can’t expect support or understanding. I have to give myself permission to continue to like myself. To sift the ashes and find some part of me that might be left and she’s there, so I’m proud of myself there. I’ll pat my own back. I feel I’ve walked a million miles and I’m too tired to take another step. Why prolong a life that is just filled with pain? If you don’t understand this pain then stick your hand in a car door and shut it. Then have someone just start kicking on the door and you can’t ever take your hand out. Then someone gets into the car and drives off still with your hand in the door. That’s fibromyalgia. I love my husband and grateful that we have been able to hang on. Had he not allowed me to find my own feet, I might still expect him to carry me. He made me angry enough that I was going to prove to him that I am a worthwhile human being and he was lucky that I chose him to share and spend my life with. Whatever that life might be. I had often thought cancer would be better than this, at least with cancer you either get better or you die. That with cancer the doctors attempt to make you comfortable with the pain, with fibromyalgia you have to learn how to “cope” with the pain. Let me say this now. There is not now, nor will there ever be a way to “cope” with pain. The doctor is just tired of your complaints. So why keep asking for his help. I thought my doctor just didn’t get me. He misunderstood my meanings or took what I was trying to say out of context until I requested a copy of my medical records and saw his notes. I saw he did understand and he was concerned and he was doing his very best for me. I just wish he would have verbalized it to me. Regardless he has my best interest at heart. I am lucky to find such dedication and compassion from a doctor. He saved me from having to go to the specialist who would only continue to cost money we just didn’t have. I would like something to just put me to sleep when the pain is more than I can stand. I don’t think there is a pain medication that works well enough to soften the pain and still allow you to function. I hate that every day I spend stuck in the house looking at the same walls. My relationship with my husband is strained. I mean, we get along great. He just no longer seems to see me as a desirable passionate woman. That because I always feel bad I am excluded from dinner invitations, parties needless to say romance. I have to admit, I haven’t felt very sexy.

I am trying to find my place in this society where I fit. People have no true understanding as to how fibromyalgia destroys ones life. How hard fibromyalgia suffers fight for understanding and compassion. I feel sometime that my complaints are so easily dismissed as symptoms of fibromyalgia and I’m sent out the door feeling no better than when I went in. Am I not entitled to a better quality of life? What must I do to get comfort? I’m not looking for a magic pill or shot, and I’ve been told that by a doctor. I want a life that I can live and enjoy like every other person on this planet is entitled to.

The stigma of fibromyalgia has put me in a classification of “screw you”… I’m frustrated and a bit tired of being screwed. I am no stranger to adversity, I’ve overcome a great deal but this is more of a lifestyle than a choice. I continue to greet each day that this is going to be a wonderful day. I thank God for the blessings he has seen fit to place on me. I have to look at fibromyalgia as a mixed blessing. It slowed me down, to appreciate the times I have with my children when they just pile up in bed with me and watch whatever. They tell me stories and jokes and make me laugh. I’ve been able to share with them that your health is something you can’t take for granted. You must make sure you save your money so they want ever have to be afraid of becoming homeless, or dependant on others. To be aware that every single day is a day they can choose to make the best of. To have faith in themselves and in God. I need them to know that although I’m not the greatest of moms, I love them. I can’t promise them that I could afford to help them financially if they should need one day, because I have nothing. All I truly have to give is my heart to love, my ears to listen, my arms to hold, and my voice to reassure. I pray that they won’t grow up and resent the fact that their mom was always sick. I feared that I would loose my children since I was struggling to take care of them. That’s been my greatest fear. I look at them both now and see two really good kids. They’re smart, funny and talented. They seem to be focused and surround themselves with what seem to be good friends. I’ve never had behavior problems, or really any problems with them. Just to remind them to do their chores and try to respect other people. I am a thankful and grateful woman. Fibromyalgia turned my world upside down; I’ve made it past some horrific pain and survived so I know it’s not going to kill me. Fibromyalgia doesn’t have me, I have it and I have survived. I will continue to survive, really the worst has happened, and it’s all down hill now. It’s up to me and I still have things I want to do with my life. If I can help and encourage one person to know you can live with this, just give yourself time. If the people around don’t understand, that’s their loss. Be true to yourself and patent with those around you, it’s as hard for the caretaker as it is to the taker of care. I’m no less of a woman, I’m stronger, better, and have never been more confident in my life. If fibromyalgia or any other condition has affected your life fight. Don’t settle for anything less than what you feel is fair. Communicate as best you can. Make your notes and organize your home. That will help with the anxiety and confusion. Remind yourself that you’re fabulous. If others can’t appreciate that, then, we really don’t need them in our lives anyway. Stay positive, easier said then done, but I’m proof. I’m here. I’m happy and I am able to look forward to tomorrow. When the darkness overcomes hang on to all the good, hang on to it hard, keep positive. Don’t quit!

my love to you whomever you are.

I dont know how you could have ever come up with the words to describe yourself but it also describes me and im sure several other people in this forum. I sit and think what words to use to describe how i feel but because of the fog i cant come up with any. I dont post much because i cant find the right words to say without sounding like a blabbering idiot but you did beautifully.

Just know we feel the same as you.

Hugs, Alicia

That was an amazing post you wrote. I read it three times and it grabbed my heart and soul. It couldn't have been said more beautifully. I thank you for the most moving thing I have ever read on how we feel.

I hope you keep your incredible outlook, leslie

You write so beautifully. Have you considered writing a novel?