Fibromyalgia Support Group

i am 35 and was diagnosed with this disease 3 years ago. i am a wife and mother and have seen my fibro get worse with each year. i have had to stop working bec it is hard for me to travel and i stay in my house most of the time. No energy, plenty of pain, fibro fog , unsteady, numbness, sensativity, you name it... i am an artist and my hands shake now and i find that its hard to control my body. i fear where this is all going. this is not the way i was, i was full of life and energy. i mean way too much energy... now i get scraps of energy which get used up so quickly. i want to make peace with how i am right now but i find that whenever i try that i get so sad and depressed and i hate that 2. hmmmmmm. any tips for coming to terms with what is?

One word. Acceptance.

Don't look back at what once was. Look at today with an eye on tomorrow. Our pain can change from day to day, so each day is a challenge unto itself. Accept that challenge. Get through today the best you can, and rejoice in your accomplishments. Lower your expectations of yourself and allow yourself days to heal, if that's what's needed most.

You didn't say what kind of artist you are. If you are a painter, embrace your pain and shakiness by exploring new ways to express it on canvas. You will find that you look at that canvas from a whole new perspective now.

I could go on and on and on about how to deal with this, but I won't. I'll let you think about what I've said so far, and if you want to ask more questions, I - and everyone else in this group will be here for you.

Welcome to our group, and please feel at home here. Here, you are safe in a circle of caring, friendship and support.

welcome, spiritheartandsoul! i can certainly sympathize since this is all new for me. (sorry in advance to those who've heard my story over and over...perhaps i DO need to fill out that profile!)

this all came on out of nowhere so it's been a big shock for me. i was minding my own business and had some extra aches, mood swings, and headaches that i explained away (see "first symptoms" post). but then in mid-june, i had to have emergency surgery to remove a humongous ovarian cyst (it was so big i couldn't sit or bend over). literally, i went to the doc one day and was in surgery the next. i was ok with that tho because i wanted the thing out and it was only going to be 4-6 weeks of recovery and i was fine with that too because i was exhausted and my job was making me nuts. LOL

but then recovery took longer than expected, and then i had 3 months of uncontrollable nausea, and then the joint pain and fatigue and headaches got out of control.

i feel like i've been in recovery mode and crisis mode for months now (perhaps because i have been) and i'm exhausted by it. but at least now, i know what's wrong with me, and while trying to get my brain around this and adjust and get the meds/therapy combos right is stressful in itself, i am relieved to know what's wrong, i'm not dying, and i will be able to live and have a life.

prior to all this, i never turned down a challenge, could figure anything out and get my brain around anything, wasn't athletic (understatement of the year), but always managed to push thru and keep up with others. also i had a lot of energy bordering on hyperactive. joie de vie as they say.

now i'm home full time, lost the job, am waiting to hear if disability insurance (not SSDI) will get approved, and don't have the energy and sometimes cognitive ability to do what i want to do. but i'm slowly learning how to adapt. as many others here have said, you have to live and have a life. so i do a little each day.

my newest thing i'm trying is starting the day with modest goals based on how i feel. i tend to do too much from force of habit and guilt at not contributing financially to the family now. but i always pay for it. so instead of ALL the laundry or 5 stores on errand day, i am trying (not always successfully) to pace myself and maybe do 1-2 loads of laundry or 2 stores a day.

also, some good advice i got from folks on this site was to use the help you can get. don't feel like you're a loser or failed or a cripple or anything (not saying you are; that's how i feel on bad days). i have one of those grabber things for what i can't reach, i got a handicap hangtag so i don't have to walk so far when it hurts, and yes, i get in that damn cart at the grocery store.

these things are easy to remember when it hurts. but i have to get better at doing them even when it doesn't. hopefully, that way, it'll not hurt so bad and i'll have more energy to do more if i take it easy a little.

sorry to be so long-winded (what else is new?), but hope that helps.

A

Welcome to the group. You have definitely come to the right place ! I just try to get through one day at a time. I know I cannot do all I used to and I am ok with that. I now know that I have to ask for help with things I didn't used to. You just have to come to terms with all of these things, and be thankful for what you can do and what you do have. It is difficult at first but it gets better. You will still have days where you feel down, but the next day will be better!

Starr already gave some good advice. For myself, I am still working on accepting life like this. I have good days and bad days and try to tumble with the events that occur. I do know that positive thinking helps. I try to remember that even as bad as fms has been for me so far, it brought me new friends here at this forum and has lead me to better places in my life. Of course, not everything is great or I wouldn't have the pain and other ailments, but I can say that finding relaxation methods, finding my trust and faith, and being open to different forms of treatment have helped. It's one day.. no one second at a time and you will survive it

One more thing not to forget... you now have all of us to help you survive it

*hugs*

Post edited by: Midnyte, at: 11/21/2008 11:48

Welcome! The other day I posted surving the Fm Limitations and jesnyc01 responded to me with the following. I thought it was a great answer and I hope it might help you. I am going though the same thing.

jesnyc01 said:

I understand everything you're saying here Livn. I often feel like I'm pushing myself too hard, but still not hard enough. I get so frustrated that I haven't done more, when I stop to realize how much I've done already. It's hard to walk that line. I constantly feel as if I am giving so much at work that there's nothing left for me. I feel overwhelmed.

I definitely feel like the fibro has cut many of my dreams away from me. Places I wanted to go, career paths I wanted to take, many things are simply unavailable to me because I am physically incapable of completing those tasks. It's not about determination or anything, it's about, I want a job where I have to lift around 40 lbs or more a day, and I can't do that. So, I have to do something else. I want to live in a place with all 4 seasons, with cold weather [winter is my favorite season], and I can't do that. So, I have to live somewhere else. I want to eat the types of foods that I cherish and love to cook, and I can't eat those anymore. So, I have to eat other things I can't afford. It's horrible.

What keeps me going is that "every problem is an opportunity." I have to eat other things, let me learn to cook new things. I have to move away, let me move to a city I love that will have weather I can stand. I can't work the job I want, time for new dreams and a new determination to love other things in life and make a way from there.

It's okay to feel funky and "not productive" but something else that keeps me going is the fact that everyone goes at their own pace. And everyone has to be proud of their own progress in their own way. Never look to others as a yardstick for what you need to accomplish. Look to yourself, your strengths, your accomplishments and have pride in that. No one measures up or down to anyone else because everyone's different. I am just as proud of the accomplishments of someone who managed to get out of bed and feed their kids when they're hurting so much they can't see, as someone who manages to get to work and finish that project while fighting fibro-fog. I am proud of someone who finds their way to our support group, signs on, and reaches out for connection as someone who gets up on stage and does their leading role dancing and singing while feeling like one big bruise. Everyone is a success in their own right, and no one is a failure when they manage to continue to live and survive this condition instead of giving up and laying down and letting go.

Fibro-limitations are real, are devastating, and can be lasting. But, taking those limitations and turning them into opportunities to make something new, forge something new, is the challenge we all face. Some days it's easier to reconcile than others. Some days it's as easy as breathing, other days it's like trying to recite the Chinese "alphabet" backwards! But, in the end, one thing we must never lose is hope. Once we give up hope, that's when the fibro wins. This isn't a sprint, it's a marathon. I don't think I have anymore platitudes to share but I hope this meandering answer has helped you some.

Final answer: The limitations are as real as the determination to overcome those limitations. Never give up on that.

I hope these words of wisdom that where passed on to me will somehow help you. I know they helped me and I have saved her response on the computer.

Thanks jesnyc01 your answer rocked my world!

Peace livn4jc4evr

WOW! Those are wonderful words to live by! Thank you for sharing this with us!

wow, im so thankful for all of your suggestions, you have given me a lot to think about over the weekend. thanks for reaching back out to me. I appreciate the support especially from people who can understand better than anyone. i think the process of acceptance is emmotionaly painful for me. it is a huge adjustment to go from super women to barely accomplishing anything. I am trying to learn to embrace the new me and find the possotive aspects of having this disease. Will share my thoughts in the future. Thanks for all of your love. i wish you all the best.

ps i am a fine artist. I paint with oil and other mediums . people often think they are looking at a photograph. you really need a steady hand and energy to do that kind of work.... so i work when i can in small increments. maybe 20 to 30 min then i have to lay down.... hmmmm. have a wonderful weekend

Yes, Livn...that was a truly inspirational post, wasn't it. I'm glad you re-posted it so that I could read it again.

Real quick i just wanted to ask if there is anyone who is ok with having fibro. Meaning has anyone gotten over the angry sad depressed part of being blessed with this disease. Do you think that one can attain that level of aceptance when dealing with fibro or is it a daily fight against reality when you are struggling.