My Fibromyalgia (Fibro) Soapbox
I saw this on Pinterest and to me it said something other than what I think it was meant to say. This is exactly how I feel about fibro, I never know if it is killing me or making me stronger. I do know that I live with it everyday and no one that has never experienced fibro will ever understand what it is like to have fibro. Oh yes, occasionally I run into someone and they get it. I met a lady recently at physical therapy and she said, "I don't have fibro, so I don't feel the way you do. I don't experience pain the way you do because I am not as sensitive to pain as you are". I almost passed out because even though she does not have fibro, she gets it. That's right, she gets it......
This is a very rare thing to happen most people including Doctors, don't get it. They can never know how I experience pain and to what degree I experience pain. I have found over the years that most Doctors just kind of listen to you and pretty much blow you off. You can try to explain your pain and your struggle to be better but they can be very dismissive. I know and I have know that there are some folks that say things like well you should exercise more, work harder, pick yourself up, eat better foods, your lazy, nonproductive and IT'S YOUR FAULT you are sick.....
Well I am here to tell you, IT IS NOT MY FAULT that I am sick, I have Fibromyalgia. Let me say this again, I have Fibromyalgia and again, I have FIBROMYALGIA. I have been saying this for 16 years and I am still saying it and I still struggling and I still need answers. I don't need or want to be dismissed and treated as something other than what I am, a human being that is sick. I need understanding, care and help because my body is sick.
I am and have always been a very hard working, intelligent and capable person. I know when my body is telling me something. I can hear my Fibro loud and clear. I always tell people it is like my body at hums at about a 2 or 3 level pain and then it starts screaming at me at a 7, 8. 9. It never quite gets to 10 and I would only give this level to childbirth but still my body screams. I fight every second, every minute of everyday to be the best person I can be. I fight to struggle through the hard things and the things I need to do. Then occasionally, I have a good day. Think about that for one moment, occasionally I have a good day. What if you had to say, "occasionally I have a good day".
It isn't just the pain, it is the exhaustion. Before my Fibromyagia and Pernicious Anemia, I thought I knew what exhaustion was, I had no idea. Now I know, when you can not even sit up in a chair to eat from a plate, that is exhaustion at it's ugliest. So I live with severe pain, discomfort and exhaustion. Imagine a life like that, everyday and always. Then add to that health care workers that either can't or won't help you, that dismiss you. Then the things people say to you and the fact that everyone keeps looking at you, as if you did something to cause this terrible thing to happen to yourself.
Every time I describe my pain and my struggle to someone I get, "but you look great"..... But I look great, sorry but looking great doesn't tell the story of what goes on inside my body. My body is sick and it has been sick for a very long time. This isn't because I am getting older, or because I don't exercise (by the way, I do exercise) nor is it my fault. This is something that happened to me and I am sick and I hope one day someone will actually be able to help me.
For all of us that live in constant pain, help us find a cure.....
Living With Fibromyalgia....
End of Fibromyalgia Soapbox
For Now.....
Gentle Hugs To All My
Fibromyalgia Friends
for we are
Fibro Warriors and Survivors
and one day.....
I get it too sweetheart. I love you very much.
ReplyDeleteYour loving Husband.
Awwww I love you sweetheart and thank you for always being there for me and for standing by me. You are a dream, Beverly
DeleteDearest Beverly, thank you deeply for sharing your struggles with us and voicing some of the many elements of what life is like for those with FMS. I was in tears by the last line, because you so perfectly captured my sentiments not only on my FMS, but on each chronic medical condition that I battle day in and day out. You are so brave, strong and incredible. I hope with all my heart that one we're both able to find doctors that don't dismiss or downplay our suffering, that just take one single moment (for starters) and tell us that they understand. That life is so often a waking nightmare for us 24/7, that our pain is real, that our exhaustion is real, that our suffering and the impact that FMS (and all CI's) have on our bodies and lives is so very real. This doesn't seem like much, yet I've learned throughout my 11 years of being CI, that it is harder to find than water in the Sahara. This is all the more reason why it's important for those of us in the same CI boat to support, help and fight (as in champion awareness) for one another. I will always be here for you in any way that I possibly can, and want you to know that you can share in the in the world that you'd like with me.
ReplyDeleteFibro fighting friends forever!!!
♥ Jessica
Dearest Jessica, thank you ever so kindly. You are my champion and I mean that with all my heart. You are always there to cheer me on and you and your blog are such an inspiration. You always say the most wonderful things. thank you my dear friend, Beverly
DeleteBeverly,
ReplyDeleteYou are a Warrior! Thank You. I know that we have talked about our disease.
Just on Tuesday this week, it was a very bad day. I tried to do things around the house. It was all I could do to shower and get dressed. My hubby is working the late shift so he was sleeping. I tried all day to do things but the pain was to much. Most of the day I sat at the dinning room table with my computer, a blanket, and a glass of tea. I could not even make it to couch down 7 stairs. I finally gave up an hour before I had to get my hubby up for dinner so he could work. I could not even fix him dinner. I just lay down next to him and the tears ran quietly down my cheeks.
My grand mother use to say "What dose not kill you makes you stronger" I question that most days. I do Know that my Heavenly Father has a plan for me even at my age. I also know that I agreed to this before my turn here on earth. I must have thought it was going to be a piece of cake. Thru this I have learned compassion,and empathy for others. I know that behind every face there is a story, we never know what other people are dealing with.
Stay strong and fight on!
Love and prayers for you my Fibro sister.
Sussanna
Beverly,
ReplyDeleteWell put, and very needed words. Most of us don't have a clue what chronic pain feels like, nor do we recognize the struggles of living with it or with some one who has it. It's hard on ALL who are surrounded by it. But those who LIVE WITH it, who FEEL it, and HURT with it, those people are heros. In my book, pain is the most difficult thing to think through. Whether it's body pain, head pain, depressed emotions or others, it's happening now and won't stop....that's chronic and that's NOW. The effects on lives with this pain is devastating, and can be serious. Thank you for sharing with all of us how difficult this is. We all need to be more aware that the persons with whom we come into contact have lives that may be full of pain. Make others aware!!!
Hugs,
Doni
Dear Beverly, I found your blog today and am so excited because I've never found a blogger who writes about her fibromyalgia. So I have to tell you that I suffer from this mean illness too. In winter 2009 I had a flu and from then on - I can tell you the date: 2nd January 2010 - there was no day without pain. The doctors think it's fibromyalgia because they found no other reason. And the bad thing is that it get's worse and worse, slowly but continually. So I'm afraid about the thought that it might never stop. Nobody would recognize that I'm suffering and almost nobody knows that every step or almost every movement causes pain. And I dare not to say that because of the reasons you mentioned in your post. I have still one advantage: I do not feel exhausted yet but maybe that will come later. So I thank you for your nice and encouraging words. Let's hope that someone will find a way to help us soon. Wish you the best.
ReplyDeleteDear Miss Maple, thank you ever so kindly for visiting me and for your nice comment. In the past I have tried not to say much about my fibro but recently I have come to feel that if I say nothing then I contribute to the thinking that fibro does not exist or that there is something inherently (in a nagative way) wrong with people who suffer from fibro. So I decided to speak out about living with fibro and to be as frank about it as I can be. I no longer wanted to be looked down on as if I did something to cause this or I made it up to keep from being a productive person. I lost a lot when I developed fibro in terms of my career, friends, family members and the list goes on. I simply decided to fright back and to make others aware and to be an advocate for those suffering. I no longer wish to stand alone in silence and have others look at me as if I am something other than what I am, a very sick person with feelings.
DeleteThank you for your comment and for sharing your experience. I think in speaking out we can make others aware of this and with awareness comes understanding, acceptance and hopefully help.
Thank you following and i have visited your blog and I am following you back. Welcome and I will talking to you. Anytime you want to talk you are welcome to email me at teacottagepretties@satx.rr.com.
Gentle Hugs, Beverly
Thank you for your nice reply. I can only say: You're sooo right.
DeleteAnd I'm glad that I found you. Thank you for following as well.