My life is pathetic. I have lost so much of who I am, what I was. I hurt in my heart, I hurt in my head, I hurt in every part of my body. My life has been scaled down to accommodate my illness and it is a very solitary lifestyle. Not many people to talk to, not many experiences anymore. Before I got sick I was the life of the party. I was fun! Oh I am thankful for what I do have, for many are not so fortunate. But compared to what I did have I accept my role in life is being played at 50% of its potential. And I can cover it up with cherries and rainbows and puppy dog smiles, but the reality of the situation is I straight up got half my life taken away from me. I got half the possibilities that should have been afforded to me. The other half just got up and walked away. One day your sick and as you are trying to figure out exactly how to live this way the next thing you know, you wake up 5 years later and your life just does not resemble your life anymore...
We have been robbed, and this goes for any chronically ill person ever, not just Fibrates. We adapt and comply and accept what is now, knowing we are choosing out of a limited basket to begin with. And we build an existence that supports who we are. And we quietly put the goals and ambitions of who we were into the closet of no more. Life turns into a struggle to survive, each day a chore, seeking out joy and laughter where ever it can be found. But I don't want to feel this way anymore! I want to champion a cause! I want the world to know about Fibromyalgia. I want research and funding and clinical trials and acceptance of core-health, Functional Medicine style. I want to get better. I don't want this "managed", I want to heal! So anyone who is interested in pursuing this cause, come with me. If you are in the mood to actually be an ACTIVIST for Fibromyalgia, comfortable with the mess of fighting for a cause come with me. For those that are not we really don't have too much in common anymore. For we are going to spread awareness, make a fuss, get all sorts of people and things riled up and NOT STOP UNTIL THEY FIGURE OUT WHAT IS WRONG WITH US, and then hopefully how to fix it.
Thanks for joining,
Leah
P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!
OK, it takes a lot to make me cry but that just made me cry. As I've said before, "get out of my head". Sometimes I don't know how I'm feeling until I read one of your blogs and it hits me...I'm not alone. Someone actually knows how this illness impacts a life. Sometimes I feel like I'm two people. The one that used to be an outgoing sales person that talks too much and the other girl that sits home too much with limitations. I'm with you, let's make some noise about Fibro!!! ~Donna
ReplyDeleteLeah, your life isn't pathetic......I think you have put your gifts together and found your calling. I'm with you girl.
ReplyDeleteThanks Leah for stating what needed to be said, loudly!!! No one is going to help us, we need to help ourselves. Until we rise up and take the helm no one is going to take us seriously. I have been waiting until my double knee replacements to start a fibro support group in my town but now I think I will go ahead with my plans. Thanks for the inspiration. While on the subject, every person suffering with fibro should be making plans to have their town or area recognize May 12. I represented the fibro community last year and was given a proclamation from the city where I live declaring official national fibro day. I was interviewed for the local paper. That was only what one 55 year old lady did. Think what would happen if all of us came forward! Keep up the fight Leah, I will roll with you. Hugs.
ReplyDeleteThank you, Leah. You have described a Fibrate's life exactly! Nobody understands us and what we go through. We need a voice who states our condition and demands. Ignore the ignorant and keep on with your plan.
ReplyDeleteI am with you, and understand totally how you feel. My family often tells me they are sad for me because they know what I could be if I didn't have this illness, they know I could be successful and that this illness holds me back and I am functioning probably at about half of what I maybe could do but again Im not sure because I have been sick since I was a teenager so it has taken away all of my young years that should have been happy. But its true we need to advocate for ourselves because no one else will.
ReplyDeleteLeah...I always love your blogs, I've had fibro longer than you but you have such a way of sharing with the world thoughts and topics that have thought of so many times. I stand with you about being an advocate, for many years I was reluctatnt to bring firbo (or CFIDS or EI) up but I've beeen more open to discuss it when the occasion arises. Just the other day, I was at a store and my discussion with a saleperson turned to health. When she learned I had fibro, she told me two friends of her's did and that she had M.S. We talked for about half an hour about autoimmune problems, symptoms of our illnesses, causes or lack of them, etc. To most this would sound "boring" but it was SO invigorating because someone knew, cared, and wanted to talk about fibro!! The more people we can get involved hopefully the faster the research will proceed and we can find a cause and cure!!
ReplyDeleteLeah you have a gift of writing just what you think(I feel the same way you do) Its like your in my head,I am not good at expressing myself. thank-you. I am defintly going to be very involved in getting the word out. Spreading awareness, being an activist & shouting out.
ReplyDeleteyou spoke my heart & soul once more
ReplyDeleteHi Leah
ReplyDeleteI've had Fibro for many many years. Like you I feel robbed :(
I've recently written a blog post to highlight the condition.
You're not alone lovely...there's loads of us...
gentle hugs
Karen x x x
Leah, I have had fibro for about 15 years and for the most part have done the very best I could to ignore it! When I was in pain I kept it to myself. When I was frustrated, lonely and sad, I kept that to myself as well. Maybe I thought that by hiding the full extent of how I was feeling I could somehow negate the full extent of the effect Fibro was having on my life. Yesterday I stumbled on your blog and the above post and it suddenly hit me how stupid I had been. I can relate so much to everything you have said and will now be helping to make others aware of what it means to have to live with this illness 24/7. Thank you so much honey. Blessings to you all Liz xxx
ReplyDeleteLeah, you are amazing, you truly do have a gift of expressing your thoughts that all can relate to.Thank you so much for your blogs their wonderful.
ReplyDeleteI'm with you girl! And you are such an inspiration to me. You're life is still being unveiled and you are being used so mightily to change the world. Let's go! ;)
ReplyDeleteThank you all for your kind words and I invite you, if you have not done so already, to join The Fibromyalgia Fun House on Facebook so we can keep up. We are gearing up a good fight, or assault, on the government to take us seriously, up our research funding and recognize our day, May 12! Blessings to you all, your words mean as much to me as mine do to you.
ReplyDeleteLeah
I'm with ya Leah!!!
ReplyDeleteLeah, I am there with you! Let me know what I can do to help!
ReplyDeleteIf there is anyway to bring out more awareness, let me know. I have mailed out 30 packets filled with information to Stars, congressmen, Senators and whoever. So far I have heard nothing.
ReplyDeleteNancy
Leah, you are doing a fabulous job. I have had fibro since I was a teenager but didn't know what was wrong with me. Been told growing pains.. Ha Ha!! Fibrocystic Breast Disease in my teens, hysterectomy at 24, 2 breast surgeries at 24, with one a benign tumor. I am a survivor. It has been one thing after another with my health. In 1985, it reared its head full force and I was hit with the worst pain imaginable while on a white water rafting trip. My muscles and nerves went berserk. I cried all night. My ex would not even take me to the ER. After years of going from dr to dr, test after test, I was finally diagnosed in 2001. I had a very caring and supportive doctor who also had the symptoms of fibro. She cried giving me the news of my diagnosis. She helped me get through my darkest moments during the next few years until I had to move south again. I have fought long and hard trying to get someone to listen me down here. The prayers going out for all of us everyday makes it more bearable. Just knowing that someone else cares and knows what we go through, it is unbelievable. I have been trying to make everyone aware of what I have been dealing with most of my adult life. I have lost many friends through the years because they did not want to be around someone who complained all the time of being sick, in pain or just feeling bad day in and day out. I found classmates from high school who had it or had family/friends with it. This has opened a whole new world to me. Without people like you Leah, trying to get the awareness out and advocating for others to get the word out and making people know what fibromyalgia is all about, we would be no where. All I have found in my town is a support group every few months at a local hospital,with a doctor talking about it but nothing else. They have this idea that diet,exercise and mind awareness will help heal you. That is not what I am looking for. I want someone to LISTEN to me, HEAR me, TALK to me and let's sit down and really talk about what fibromites go through..and what we can do about it. The doctors here do not get it. They are just trying to sell you a holistic approach to it with no pain management at all. No one talked about living with chronic pain. The hospitals here do not even want to hear that word "fibromyalgia". It's funny when you walk into the ER, there is a sign that says. "If you have pain, please tell your nurse so that we can get your pain under control. You should not have to be in pain." That is a joke. They won't even give you anything for pain. Plus, you have to sit in ER 10-12 hours before they will even see you. Then you are in/out really fast. Treat the symptom and send you home. Listen, I don't want or like to be on pain meds but I can't go a day without it. I can't take pain. If I could not take a pain pill, I can't get out of bed for days/weeks. I'm a wuss as I have been called for not being able to deal with it. Oh well!! Why should I have to learn to deal with this horrible chronic pain that we all go through? No one should have to deal with it. We should have pain management. We should have resources available to us to help us live better lives. So my dear Leah, please continue your fight for all of us. I stand beside you 100% and will do whatever you need me to do to help get the word out. I will be an advocate. Anyone talking about it is an advocate. I will continue praying for everyone that we get that CURE, that they will do research and that our government and medical community will stand up for us. We deserve better. We deserve to be heard. We deserve to be treated with dignity and be treated as real human beings. Someone has to hear us. They all can't be deaf. God bless you Leah. I am NOT giving up. EVER!!!
ReplyDelete