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Acceptance-- What You See it As, How it Changes Things..
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missist posted:
I was diagnosed about the time my daughter was born, so about 3 years after I knew something was wrong. Looking back--I may have had some form of this as a child--but I definitely had something wrong at about age 27. I'm 54 now. (sometimes feel like an 80 y/o teenager)

When I got my diagnosis I was very confused as I'd never heard of it and it didn't seem like there was much I could do about it. At the time my biggest issue was pain, pain , and more pain. Over time--that gave way to other issues that have come and gone and some have stuck and some disappeared.

I never talked about it much with family--because I perceived--probably correctly back then--that I was looked upon with disrespect and a sort of 'you're lazy' 'if you'd just try harder' or its psychological' thing.

I sort of withdrew away from any family that was outside our little house walls and threw what I had into raising and homeschooling my four kids.

At this point in my life I have gone through a semi-remission that gave way to a new batch of symptoms about 4 or 5 years ago.

Just now I am beginning to realize that after having this all this time--I never 'accepted it' properly--and I never stood up for myself and really explained to people what is wrong--I just let them and Myself too-- judge me harshly.

I now realize I did NOTHING to cause this. Its not from not eating right, its not from the weight I gained AFTER I had it, Its not from improper exercise or 'guilt' over something (had someone suggest that!) Its a real illness and I can't escape it, and it may have good days and bad days--but I'm not in control of it--even if I've learned how to manage myself given the usual patterns-- managing symptoms is far from controlling them.

So... I 've decided to start 'coming out of my closet' and telling family what fibromyalgia is and that it is real and that I have it and that it has altered my life a great deal and I'm fine with it. Life is what it is. No more trying to be cured or to hide it.

I don't know.. I used to think that 'something else' had to be the real problem--I give up. I know my spine is an issue and maybe it is root? but so what? I can't replace the whole thing, and there's no proof really at this time that it would fix the fibro anyhow.

So-- I accept this finally. I'm ready to move on. I am happy to have a place where maybe people 'understand' what I just said--or not. But either way they aren't going to judge me, since they know what kind of mess I deal with every day. LOL. So glad to have compadres finally.

God Bless y'all. Also it seems my super fatigue is lifted a bit this morning. So I basically weeded and moved ONE plant and spent the next week recuperating.. its going to be a heckuva long gardening season at this rate. LOL.

Have great days!
Mary
pokeberrypatch.etsy.com
pokeberrypatch.blogspot.com
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missist responded:
Oh also-- I am super grateful for my new neighborhood! One thing I have noticed right away down here-- People take things at face value. I've told a few people about my fibro--and by golly-- they genuinely felt bad for me. I was shocked. Up north where I come from-- it was always looked upon with a bit of skeptical --maybe I was the one who was most skeptical?

Anyhow I have very super nice neighbors and I'm so happy here.
m
 
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dollbug responded:
Hello Mary....I think it is really hard for most people to understand the wrath of the dragon anyway. Since most of us *do not look sick*....it is hard for people to know just how much the mean and ugly illness affects us. Heck, there are days when I do not even understand it. I have learned a lot about it and there are times when I know what I did to cause the meltdown that I am going through and then there are other times when I had no idea what caused me to feel the way I do.

I also think that there has been a lot of research on FM and doctors are beginning to understand finally that FM is real. I have read that there are millions of people who are affected by it. I thought is was great when WebMD brought in Dr. P....who is a doctor and also has FM....so he knew a lot about what we were facing each and every day.

He provided some really good discussions about different subjects....so when you have time you might want to check his *discussions* out. I think those of us who were here when he was present....really miss having him here.
I know that I do. There are several people who have posted here who has him as their doctor....so very lucky to have a good doctor who truly understands....a dream for any FMer.

I continue to hope that with age that dealing with the wrath of the dragon will get better. (we can always hope).

Here is hoping you have a good day and I hope your fatigue has indeed lifted.

Take care and remember to pace, pace and pace even more.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Anon_2912 responded:
It did not change anything for me. I refused to let it. I don't tell people I have medical issues of any sort. Need to know basis & they don't need to know.

I take one day at a time & always ask God to walk with me. I won't say I don't have pains because I do, but I won't let it alter my plans. Life is to short to give up on doing things with family or friends...So fibro can kiss my A$$!!!

Life is how you react to situations. I for one refused to let it change my life...I stay positive in everyway possible.

What changed for me on how I reacted, I would have to say almost losing my 19yr old son. He almost died from a bad accident. He fell 5 stories from a parking garage onto concrete. Sever injuries, I was busy with him & his recovery that I did not have time to focuse on Fibro, and I realized that the symptoms did not kill me and when I focused on something I just ignored it..Then right after his accident I lost my 48yr old brother to heart attack, just like that..

I realized how short and unpredictable life can be, so to heck with Fibro stopping me...I will enjoy everyone when I can, not when fibro allows me....
 
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missist replied to Anon_2912's response:
well it sure changed me. I don't not enjoy people at all--but I don't have a regular job anymore and I don't get things done around the house as well--cut back on my garden activity.

on the plus side- I now grow what I love more -perennials not veggies. And I have time to spend drawing and creating so I sell artwork instead of working a job.

I don't think 'refusing to let it' was in my control.

I am sorry about what happened to your son however. I did manage to care for my kids when I was younger, even in pain--but I didn't have a lot of other things going on.

I'm grateful for all God has given me. I do think though that its OK to let people know what is going on. And I hope it will be better than pretending it isn't.
 
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missist replied to missist's response:
just still have this on my mind. I didn't avoid people that I enjoyed so much--as more like I avoided being in situations where I'd have to use up energy I needed for my main job--caring for my kids. And I guess being a different type of personality perhaps--I am vulnerable to people having a crappy opinion of me--it wears on me. So when I knew there were those who would judge me or something about me--I pretty much didn't feel I wanted to put myself out there to be slapped too much.

if that makes sense.
 
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rosielou replied to missist's response:
Hi Mary,

I love your words here, being vulnerable to people having a crappy opinion, that it wears on you. That's how I've felt so many times over the years. My life has gotten smaller, less and less interaction with people as I don't want to go through the efforts of telling new people about parts of my life. I walked away from a 25-yr friendship a few years ago because I was tired of explaining to her why I couldn't do things. I wondered if she wanted her disapproval to be my burden.

But my life is rich and good, the friends I have are wonderful. My husband and son are blessings. My dog, oh that dog, is such a clown!

I think I have accepted the Fibro, but I haven't rolled over and given up. Many days I keep moving even though I know the pain is or will be bad, but I WANT TO DO those things. And sometimes I keep moving because I Need to do things. Either way I'm going to hurt, might as well get some things off my list.

Rosie
 
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Anon_10089 replied to missist's response:
Hello-

Thanks for your insights. I think your feelings echo many of us here. I know people's opinions used to concern me more. Part of that was that FM really began effecting me in my early 20's . It's extremely difficult explaining pain and fatigue to people when you're that age. And my biggest enemy was myself--expecting too much and being too angry about my limitations.

I am now in my early 30's so I still have a lot to learn. I have accepted the FM and it doesn't get me down as much as it used to. I also save my energy (mostly mental and emotional) for things that I enjoy or that are important to me. I was able to travel to Asia for 3 weeks last month, and even though I had some issues, I made it. I'm feeling the effects of it now, but I knew that trip was important to my husband and so it was important to me.

I do wish that sometimes I was the personality type that could shrug off what other people think of me. I fight giving other people's opinions too much power. But under it all, I remember that I deal with chronic pain and chronic insomnia. That makes me strong in a different way: I face every day already behind. So even though I may not be accomplishing as much as others my age, I can still consider myself a strong person.

I do like that FM has given me the ability to be more compassionate to others. From a pretty young age, I learned to put myself in other people's shoes. That has enabled me to have a peace of mind that I didn't expect. I can give others the understanding that I hope they give me.

I've really enjoyed all your posts. You are a thoughtful person so thank you for your contribution here.
 
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BetteK responded:
Mary and all of us,


Many of you feel worst in the morning and get better as the day rolls by. Despite getting minimal sleep most nights, my best time has always been mornings. As the day moves on, I get sorer and more fatigued. By supper time--my busiest time of day--I am running on empty. This leaves absolutely no energy for stopping by to visit friends. When people visit us, I'm often forced to excuse myself and go lie down.

This is very limiting. I'm sure that most of our circle of friends feel as if I have snubbed them. Wouldn't you if your hostess went to bed while you were still sitting in her living room? Luckily, my husband talks enough for both of us and can stay up when he wants to.

Things get worse in the summer. My husband and son try to take advantage of all the daylight hours to do all the things that must be done on our farm during the growing season. They come in for supper after everything is done. Believe me, there are plenty of nights when dinner is sitting in the oven on "keep warm" from 6 p.m. until as late as 10. (Truly tough on son, since he works full time from 7-3:30 as a groundskeeper and then comes home to put in many hours on the farm.)

It's not as if it's possible to sleep during these hours. For one thing, the sound of tractors would keep Rip Van Winkle awake. For another, as I said, I rarely sleep anyway. But I do need to lay down.

It is wonderful that you have found a warm, accepting community. We all need that. You are so lucky.

And here's to luck for us all,

BetteK


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