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What do you think the most hurtful part of fibro is to you? (Besides the pain of course)

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Posted 3/25/2010 5:15 PM (GMT 0)
 

For me, I'd have to say its the lack of understanding that family and friends have. Even if they act like they do understand, its temporary. Like this past weekend when we took our middle son to Kutztown University, I knew that I would be in "flare" mode after from all the walking cause we walked a lot, and I do mean a lot. I told my husband I would pay for it later, but it was worth it. He said, don't be so negative, maybe you will not be in pain after. I sorta smiled and said yes your right, then wanted to start crying on the way home when the pain hit. I may be called negative but I know how fibro plays the game and I know what brings, pain - not all the time, but most of the time.

Posted 3/25/2010 5:26 PM (GMT 0)
I think the most hurtful part is "looking fine" when everything I'm experiencing is internal.

I am the type of person who always wears makeup in public...not a lot, but I like to look nice when I'm out. Unfortunately, I then get the "wow...you look great today...I can't believe you're having pain!". It's frustrating, especially when I try to protect my friends from hearing me whine or complain. My closest friends know and are wonderful, but it's the casual acquaintances you run into that question me. I suppose I could go without makeup, so they see my outside matching my inside....

At any rate, that's probably the most difficult part of having Fibro in my opinion.

hugs
Pam
Posted 3/25/2010 5:55 PM (GMT 0)
Hopegirl, I think it is hard for our family and friends to truly realize what we deal with.
Unless they have fibro, how would they know? My family and friends are caring and
supportive. They do understand that I can't do what I used to do, but they don't feel
the pain and fatigue. I sometimes will do something that I know I'll pay for later, but
that is my choice. We have to determine what we can or cannot do and is it worth it.

Besides pain and fatigue, the hardest part for me to come to terms with was the loss
stamina and being able to do what I wanted when I wanted. There are things that I
have given up, but I have found new activities to fill my life. I do regret that many of
the activities that I would enjoy with my husband I can no longer do, golf and rugged
terrain hiking are a couple of things I miss. I know I can't dwell on what I can't do and
find pleasure in the things that I can still do.

Hugs, Robin
Posted 3/25/2010 5:57 PM (GMT 0)
 

Yes, I forgot about that, I do miss the ability to just get up on the weekend and go, go, go and now that does not happen. I am so exhausted from my 40 hr work week that I don't really do anything anymore other that try to rest and recoup for the next week.

Posted 3/25/2010 5:58 PM (GMT 0)
Yes, the hardest is the fact that people judge you. My son (27, living at home) doesn't "believe in" fibromyalgia. He thinks it's the result of my being inactive for too long. (He doesn't remember me when I WAS active, when it started.) So he doesn't help me much, thinking it will do me good to try to do all the housework myself. He has ALWAYS thought he was right about everything from the time he was born! My husband does believe me, but isn't really the listening type, doesn't like to dwell on his own physical problems (which are very few), let alone mine. He tries to use humor - like if my back hurts, "we'll have to have it cut off." And he certainly doesn't say anything to our son!

He also tends to look the other way from the mess that is our house. I've just started paying a woman from church to help me a couple of hours a week, mostly moving things, some light cleaning. It's not enough, but it's something. Our 2 daughters are much more sympathetic, but one lives out of town and the other has her own back issues.
Posted 3/25/2010 6:19 PM (GMT 0)
Boy, Debbie, your son has come up with the perfect excuse not to help around the house!  And it's working!  I would let him know that whether or not he believes that you have fibro, these are the chores he will do for you.  He's 27 and still living under your roof so he should help you with whatever you ask...no matter what he thinks!

 

I think the hardest part for me is not remembering what it feels like to feel really good!  I see people jump out of bed, raring to go.  My husband used to get out of bed and start dancing!  I get up, grab my cane, and hobble to the bathroom.  But, at least I can do that and I'm very thankful for that. 

 

Sherrine

Posted 3/25/2010 6:23 PM (GMT 0)
Yes, Sherrine you are right!!!

 

I should add, I don't use anything to walk and I am still blessed each and every day because I know that for as bad as I think I feel, there are so many people with this and other sickness that are so much worse.

But I do miss that too when I look at people and see the energy and the freedom to just do things.

Posted 3/25/2010 6:48 PM (GMT 0)
Looks like most of us feel the same way.

It's so hard when those around you can't understand how demanding doing simple things is. I used to love fishing and bowling. I can do neither anymore. Repetitive motions really create flares. But no one understands that! So, it creates a "disconnect". In their eyes I look completely fine. All they are seeing though is the shell. The mechanisms inside are completely broken.

I also miss being able to "pick up and go". Now, it takes me so long just to get to the point of being able to go. And I typically run out of steam long before anyone else does.

I think the most hurful thing of all is losing my independence. Because I suffer with alot of confusion (fog) at times I find I shy away from driving as much as possible. I also limit the amount of time I'm in public because of difficulty with balance and gait, plus the fog.

Despite it all, I try to be as normal as I can be, without showing all my cards to those around me.
Posted 3/25/2010 8:55 PM (GMT 0)
I think that the most painful part for me is the fatigue. But I have always had less tolerance for that than I do pain. I have always been able to handle pain. But the exhaustion gets to me. I just don't have it in me to do what I use to be able to do.

I don't worry about what other people think. I know what I am going through. And I don't put on a face for them either. I am me, so take me for who I am. I try not to talk about it though and try not to dwell on it. Even though I am slower, I am still moving.

I hope that each and every one of you have a wonderful day.

Hugs, Karen
Posted 3/25/2010 9:29 PM (GMT 0)
Those with a lot of confusion, try to do some brain exercises.  There are games and books about this.  I love to play Bridge on line.  You have to try to remember the cards that have been played.  Don't give in to the fog.  I am totally independent and plan to be until the day I die.

 

As far as fishing goes, Nomad, I am guessing that you were a fly-fishing person.  I used to fish for small mouth bass and I had a fly rod.  But I would cast it out and then let either the minnow or crab do it's thing.  Bass stay close to the bottom.  I would have my line loose and hold it loosely between my fingers so I could feel the bass bite.  Then I'd hook them and pull them in.  That wasn't a lot of repetitive motion.  Maybe try fishing that way.  We had a blast!

 

Sherrine

Posted 3/25/2010 11:12 PM (GMT 0)
The hardest part for me is the memory problems that forced me to give up my career in engineering. I hate that I can't earn enough money to get braces for my kids, get my own teeth fixed, go see my mom before the lung cancer ends her life. I want to live comfortably with more than one month's expenses in the bank.

I cringe when I hear people say "get an education, no one can take that away from you." Well maybe no person can but illness can. The engineers I used to manage are all making 6 figure salaries. My kid is eligible for state medicaid even though I work full time.

Physically I can handle working, my main problem is the fog that changes every day and sometimes every few minutes. I can fake it at work because I've been working with English language learners for the last few years. They think I make mistakes on purpose to see if they can catch them. Little do they know!
Posted 3/26/2010 12:58 AM (GMT 0)
Dagger, I can relate to "faking it" - I'm a substitute teacher, so I have a good excuse for not always knowing what's going onsmilewinkgrin but a lot of the time it really is the fog.  One day I gave the kids (elementary) a list of spelling words, which then turned out to be the wrong list, so I had to do it over.  Then when I actually needed that first list, it was nowhere to be found.  And I'm ALWAYS misplacing my sub instructions.  Getting the kids to explain math problems that elude me is a good trick. 

I'm so sorry that your mother is sick.  Having lost both parents recently, I can't imagine how much harder it would've been if I hadn't been there.  I really hope you can find a way to go.

 

Posted 3/26/2010 2:18 AM (GMT 0)
The fatigue, fog, and pain is awful. But the worst is those that say "Oh my doctor told me that 10 years ago and it is a bunch of crap" It is not a bunch of crap, it is real and it hurts and I hate the fog, I used to be sharp as a tack and even hubby looks at me weird sometimes. I have gotten pretty good at going along with a conversation and eventually figure out what was talked about.
Posted 3/26/2010 4:36 AM (GMT 0)
Yeah, and of course not hearing clearly doesn't help in that department!!
Posted 3/26/2010 2:00 PM (GMT 0)
Talk about fog....I was a teacher, too.  I gave a spelling test.  One of the words was "pigeon".  Everyone was missing it and as I kept grading I kept writing the "correct" way to spell the word.....PIDGEON!  LOL  I didn't realize I was the one misspelling the word until I finished writing that all over the students tests...and I always sent their work home for their parents to see and sign!  Oh, did I feel sooooo stupid. 

 

Sherrine

Posted 3/26/2010 2:40 PM (GMT 0)
I think one of the most hurtful things about this for me is not being able to do all the things I want to do with my son. I want to be able to play with him a lot more than I can. And I want to be able to keep my house clean without it killing me. I just want to take care of my family, but there is just only so much I can do, and it hurts that I can't do more.
Posted 3/26/2010 3:03 PM (GMT 0)
Dagger,

 

I'm really sorry to hear about your mother also. Prayers are with you!!

Posted 3/26/2010 3:04 PM (GMT 0)
The worst thing for me is the whole bit about people not understanding... It hurts when professionals(doctors) give me the brush off because they think that I am trying to get attention. fortunately for me right now I have three excellent doctors that are in charge of my care and they listen to what I am telling them and work with me to help resolve the issures. Everyone else on the other hand friends family... they have the attitude of yeah that is one of those catch all diagnosis... I don't believe that because if it were a catch all diagnosis then there wouldn't be specific requirements for obtaining the diagnosis. It gets so frustrating. that and the fact that we don't know what truely causes it... I do not like not knowing things LOL.... i don't tolerate it because I don't like surprises.. I am having to get used to surprises because this fibro is a very day to day thing and I never know what is coming.
Posted 3/27/2010 9:34 PM (GMT 0)
HOW EMBARRASSING SHERRINE!!!

 

It's the energy I use to take for granted. Getting out of bed, feeling rested, and be ready within a half an hour to get busy and never having to give a thought to whether I would have the energy to finish what I wanted to do for the day. I know there are worse things to lose in life but for me that was a biggy. It doesn't only affect me but my DH, children and grandchildren and the things I can do with them now.

 

luv and hugs

Marlee

Posted 3/28/2010 12:59 AM (GMT 0)
These are mighty powerful comments everyone has made. I don't have issues with anyone not believing in fibro or my pain since it shows on my face quite often. But I also don't go out as much as I used to and am becoming more of a hermit. I don't mind but I know it's not healthy.

What hurts my heart is that fibro has taken away a large part of who I am. My doctor said it was time I quit teaching almost 2 years ago. And about 3 years before that I had to give up my nursery business that was going to be a retirement business for hubby and me. Now I don't feel like I'm contributing but more than that it took away who I am. As those who have taught at any level...teaching is not what you do, it's who you are.

I was getting pretty good at dancing around questions that I knew the answers to but because of the fog couldn't come up with in a hurry. Sherrine...I totally understand what you are talking about with the spelling test. On occasion I would be grading some engineering drawings and mark off one area as wrong when I had the wrong template/answer key I was using! The worst one was when I started grading final exams and everyone was getting one area wrong! After about 4-5 I decided I'd best check my answer sheet....ya, it was last years' sheet which was just a tiny bit different. <sigh> I was always truthful with the students and if I made some mess on their paper and they were doing OK grade-wise, I may give them a few points to compensate for my mess. I was careful though not to give out too much if someone wasn't deserving or was on the verge of failing.

So ya, fibro just messed with ME!
Chutz
Posted 3/28/2010 2:57 AM (GMT 0)
Chutz, I know what you mean about it taking away who you are. I was once naturally pretty strong and loved doing Nautilus, moving furniture around the house, gardening, and - especially - playing with my kids, swinging them around, dancing, and walking my dogs. Needless to say, fibro changed ALL that. I could never pick up or carry my younger daughter when she became a toddler, which broke my heart. My husband always says, "someday they'll invent a pill and you'll have your life back." I hope so, but I'm not holding my breath.
Posted 3/28/2010 4:18 AM (GMT 0)
the hardest part for me also is how my life as I knew it was taken from me in a flash!
This is all new to me so trying to understand is overwhelming,and my family doesn't ever question whats going on with me even as they see me staying in bed for days,and now using a cane. Very hurtful.Theres so much that is the hardest part right now..Just hate feeling helpless,hopeless and alone!!
lostspirt (Lee)
oh yeah sleeping lol as I don't do alot
Posted 3/28/2010 7:32 PM (GMT 0)
The loss of my energy....being able to just go and not worry about it. Having to get help with moving items or lifting stuff. I hate that I have to ask for help with things I could just do in the past.
Posted 3/28/2010 9:07 PM (GMT 0)
Physical activity and stamina. I can't do as much as I used to do and I do not feel sexy with my cane! ;)

I appreciate the positive "you can do it" posts - they are helpful in keeping our attitude up.

I appreciate this post too, because it helps me feel less alone in this fibro world. When I read all of your posts, it reminded me, "ok, others have the same challenges." It gives me courage and strength not to give up and reminds me to take care of myself and pace myself without feeling guilty.
Sue
Posted 3/28/2010 9:18 PM (GMT 0)
I think the hardest thing for me is that I just don't even understand myself.
I know that many of my friends and family are sympathetic but, truly don't understand the pain I feel and live with everyday. I too, just want to know what it feels like to be "normal". And...I get so tired of hearing myself talk about how I feel from one day to the next. I feel as though I step outside myself and think "I sound like a freaking hypochondriac"! I am very self destructive right now as it seems that my fibro is getting worse and worse and just want all of my crazy symptoms and medical issues to make sense.
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