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How to get my family to understand

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Posted 6/4/2011 2:07 AM (GMT 0)
confused  I set here in pain and my family just don"t care or understand, When I am really in pain they just don"t come to see how I am doing they just let me be here in my room all by myself they don't even come to see if i am ok. My dauther is getting maried and she don't seem to what me to help her and that just hurt. I have done everything my dortor ask me to do but I just don"t have fibromyalgia I have Arthritis two, So i am allways in pain and I am always fakeing that I am not so they will do thing with me and I am tired of doing that, help I don't what to do that any more and I would like to help my dauther on her wedding. mad Benner

Posted 6/4/2011 2:27 AM (GMT 0)
So sorry you are having relative problems, Benner. A lot of us have been right where you are. I'd like to be helping my son and daughter-in-law right now with the three kids just across the field, but pain keeps me home alone a lot.

Most friends and relatives simply can't understand pain of any kind, especially fibro pain. We don't look like we have something wrong. That goes for our arthritis too. They really aren't equipped to hear long explanations either.

What works for me is to keep explanations of pain short and simple and not complain, but I don't fake not being in pain. If I want company it's up to me to get up and go to them. If the pain is intolerable I need to tell my pain doc and get a different med or a different spine injection. The doc can prescribe meds that help with mood to make life happier too. I'm not going to give up fighting this thing.
Posted 6/4/2011 2:44 AM (GMT 0)
Hi baby girl, welcome to our fibro family...a place where people truly understand and care about eachother.

Baby girl you should join your family...it would help distract your pain.
Sometimes playing cards, board games or just watching TV really takes the focus off pain. Pain is always more bearable if you are having fun.

Your daughter is more than likely trying to help you...offer to help, let her know that you would enjoy it.

Make sure you take time to exercise, so you don't become stiff and hurt all the more. Take walks if you can...it is good for arthritis too.

It is good to educate your family about fibro. There are days I can't always participate in something and I say it's a bad day. I try not to go in to detail about all my aches and pains with hubby. He knows I hurt and understands. I used the description of fibro as an allover body sprain feeling with an achy tired body....He gets it :)

Check out fibro 101 on top of page one...wonderful info, you could use the "Spoon Theory" that you'll find there to help explain fibro to your family.

Good Luck and keep posting...let us know how you are doing We care!

Hugs, Robin
Posted 6/4/2011 5:39 AM (GMT 0)
They won't ever understand. It is the truth. It really is.
You can bring home paperwork after every DR. appointment month after month, slips for bloodwork, follow-up appts. all that which has has your DX written on it in plain English or well technically the ICD 9 code (and how hard is it for one to Google that!) and they still don't believe anything is wrong.

Just be like a duck and let things roll of your back. And when you have a good days physically speaking, and you can climb two or even maybe three steps instead of barely one, enjoy them and don't let others walk on you or rain on your parade.

Feel better and keep your chin up :) blush
Posted 6/4/2011 12:32 PM (GMT 0)
They might not completely understand, but I wouldn't say they wont ever understand. Because some people do. So don't give up on that. Keep your chin up and try to participate as much as you can. Talk it over with her and let her know that you are interested and hopefully you can help out a little.

I do agree to let things roll off your back. Take the good days with the bad. Pace yourself.

Keep posting.

Hugs, Karen
Posted 6/4/2011 12:39 PM (GMT 0)
I know how you feel.If I happen to mention something hurts my husband just says "well my back hurts or my foot hurts too" and tells me it's always going to be there so I gotta deal with it and one time he told me he doesn't want to hear about it.This might not be right but I was mad so I told him that I didn't want to hear him whine about anything either especially since he likes to about his bad luck.
Posted 6/4/2011 4:08 PM (GMT 0)
LOL!! My husband asks me "how are you?" if i tell the truth, he says he's sorry he asked, so I just say okay. Families get frustrated, hurt and angry because they don't have their wife or Mom they used to. I try to look at it from their viewpoint sometimes, even when they refuse to see it from mine.
Some days you'll get compassion, some days they just get angry about it. Like Karen said, gotta let it roll sometimes. Good luck

Maggie
Posted 6/4/2011 4:48 PM (GMT 0)
Hi, Baby Girl, and welcome!  I'm so glad you found us and joined our family.  In THIS family, we all do understand and we all do care about one another too.  So stick with us!  We'll give you the boost you are looking for.

 

I'm sure your family loves you and cares about you but there is a lot going on in your family right now with your daughter getting married.  Plus, even though they know you are in pain, what can they do about that?  Nothing that I know of.  I'm sure they wished you didn't have these problems and are also frustrated about it because their hands are tied.  I don't think you want to be talking about illness all of the time either.

 

I don't talk about how I feel.  I just live my life and do the best that I can with the illnesses that I have.  That's all you can do, Baby Girl!  Pace yourself so you don't overdo.  Things will get done but in a different time frame. 

 

If I were you, I'd sit down with your daughter, let her know just how much you really love her and how much it would mean to you to help her with her wedding plans.  I'm sure there is something she would love you to do but she probably thinks you are in too much pain to do it.  When things go unsaid, the mind can sure conjure up bad scenerios! 

 

Now, let's see if I can help you a little with that pain.  I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements and vitamin D3 supplements to help with my pain and fatigue.  Added to that are gentle stretching exercises, gentle daily exercise (I walk and swim for my gentle exercises daily), gentle massages, and I pace myself whenever doing things.  This combination helps me be in control of the pain.  I'm not pain-free but I can live my life and that's the whole goal.  You can too.  Sitting or laying too long will make you stiff as a board and  you will have more pain.  It sounds like that's what you have been doing in the bedroom.  You need to be out and about! 

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good information about fibromyalgia and you will learn a lot there.  Knowledge is power and we do have to be our own advocates with this illness.  There are links about the vitamins and supplements that I mentioned above.  These have helped quite a few here on the forum.  Also there are a couple of links that might help your family understand what you are going through.  One is The Spoon Theory and the other is A Thorough Explanation of Fibromyalgia.  This may or may not help.  Some families are better at understanding than others.  But, the bottom line for you is to live your life fully and love your family.  Don't concern yourself about what other people think.  You know in your heart that you are doing the best you can.  The problem lies with THEM!  They are ignorant of this illness so they can't possibly understand.  Hopefully they will learn a little with those two links I just told you about.  That would be really nice.  Also, don't expect others to be checking up on you.  You have illnesses that probably will last your lifetime so you need to depend on yourself for your happiness.  Once you do that, I just bet everyone will be happier...you the most!

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Now, wipe away any tears you may have and get out of that bedroom and have a wonderful day today! 

 

Sherrine

Posted 6/4/2011 6:19 PM (GMT 0)
Hi babygirl,

I know how you feel,someday we feel know one cares,but all the girls on here always seem to give good advice ,and positive feedback. I always enjoy reading their advice.

I hope you will feel comfort from reading other peoples post as I do everyday.

Take care,
Sage
Posted 6/5/2011 5:48 AM (GMT 0)
When I first read your post it sounds a little like your daughter might be trying to not burden you. Be honest with her and tell her you want to help and then tell her what you can do instead of what you can't do. Plan around your pain and do it little by little when you feel well. Just as an example for my daughters baby shower I helped with the invitations since I could set and do them at my own pace before the deadline to get them in the mail. I was diagnosed last fall and I have always been very active on our boat in the Summer. I always jumped at the chance to go to the nearby islands and walk 2 miles to the winery. I was hurting so bad last weekend that I just told them to go and have fun. They even offered to pay for the gas for the boat and everything on the island and I still knew I couldn't do it. Up until then they would just look at me and roll their eyes or cut me off mid sentence but it seemed like a light switch went on when I refused to do somthing that I normally enjoyed. My one daughter is even an RN. I think for the first time they thought wow mom must really be hurting if she doesn't want to go. I still got to spend time with them the next day as they came back and stayed the night on our boat. The next day they seemed to have different attitudes tword me. I didn't even mention pain but it's like they finally got it. You have to take care of yourself first if you are going to have any chance of being there for the rest of your family. I have found it might mean saying no to some things that I like to do to save up the energy for the things I must do.

I really hope it gets better for you. I know the pain of fibro on our bodies but the pain of being left out hurts our souls.
Posted 6/5/2011 8:31 PM (GMT 0)
Babygirl. I ignore the comments and the looks I get from my family. And boy it's hard to do this. But it hurts us all for someone to not beleive us. It doesn't help that it everyday we usually don't feel good. It takes me about 3 hours to get going and then I try and run thur the day like I am normal. My daughter asked me why I don't work. Well, she might as well spit in my face.
She knows how much I hurt and that isn't nothing but mean.
My husband understands completely. And thats all I need.
This sounds mean, but I think I am going to tell them next time, they better watch what they say cause they could get it. LOL
O well I need to get back on my anit- deppresent LOL
Just remember your ARE NOT ALONE with this problem.
Marmar
Posted 6/6/2011 5:11 PM (GMT 0)
tongue Wow, Do I understand that !!! My son constantly wants to hurt me! He's 25 yrs old, don't cha think he would grow up by now?? Absolutely not!!! This is usually said when we are arguing about his clothes being left in the bathroom or me having to pick up after him and the rest... It is annoying!! I get hardly any help at all from the family.. they don't want their mom to be an invaillet (spelling).
Although, now that the months of awfulness has passed, I noticed some help along the way once in a while.. better some than none.
After 4 yrs of trying to get them to get it.. I gave up and tried to understand myself. It worked!! Helping myself, helps your family!

Good luck sweetie!!!! Laura :)
Posted 6/6/2011 5:25 PM (GMT 0)
I like this saying because it is very true. 

 

"No one can make you feel inferior without your permission."

 

Sherrine 

Posted 6/7/2011 1:11 AM (GMT 0)
A sensitivity video for family/co-workers would really go a long way. Just because you can't see Fibro but can see RA, doesn't mean it's not there. I struggled with my mom for years. She would just get so sick and tired of hearing about what was wrong that I moved out. The eye-rolls, the criticism, etc. was just too much for me. Then when the weight piled on and I was struggling *still am*, the criticism became just too much and I snapped! She then got the hint. My father...another story all together. Even after 6 years, after my mom being sick from diabetes and seeing her state, my father still doesn't understand what I'm going through. He's also a VERY stubborn man, but he'll come around....especially with 'grand-child' type vocabulary...*evil smirk;)*.
Posted 6/7/2011 2:28 AM (GMT 0)
I think that sometimes we forget just how long it took all of us to understand what we are going through, and it is our body that hurts!
With family, I find that it sometimes takes letting your pain show. We all have hid our pain to try and fit in, but in the end we are different and others have to see it to believe it.

If we complain about the pain we have only when others can not see us, it seems made up. We have to let it show when we are with our families. For me, my parents really started to get it one Christmas at the family party. It had been a hard few days and the pain was just killing me. My muscles were spasming and I just couldn't compose my self the pain was so bad. However, the house was full and there was no where to hide.

I couldn't talk the pain was so bad as I was afraid of crying or gasping if I tried. My wife (who really gets it) asked my mom if I could sit in my dads office to rest for awhile. They new I got tired often and so they did. I made it into the back room and just broke down. Wave after wave of pain drowned me in endless misery. I was openly crying and shaking and trying hard not to make too much sound.

My mom surprised me when she came to check on me. The shock on her face was oddly comforting. She could not believe my state. The strain of the pain showed on my tear filled face. She quickly got my dad and discreetly brought him to the room I was in. There concern was nice to see and I took some time to explain a little about my life.

I think back on how many times I hid my pain from them, and then wondered why they didn't understand. I am more open with it now and it has really helped my peace of mind.

Wow...that was longer then I meant it to be. Sometimes it is good to just talk. Take care.
Posted 6/7/2011 1:40 PM (GMT 0)
Cognizance, Wow, your really hurting! I hope you are better from the Christmas party.
I really was into reading your post, It wasn't long enough!!!!

Thanks for your input... It really helps to know were not alone in our struggles!!! :)
Posted 6/7/2011 3:23 PM (GMT 0)
Even the people who get 'it', don't always get it. No matter how supportive or understanding they may be, they still don't necessarily know what to do.
Posted 6/8/2011 3:08 PM (GMT 0)
Cognizance, I loved reading your story. Oh my do I relate.
Whats the difference between showing your pain, and being a hyercondeact (terribe spelling).
Because I feel like one. lol
Marmar
Posted 6/8/2011 3:55 PM (GMT 0)
Marmar

Cultural Dictionary
hypochondriac [(heye-puh- kon -dree-ak)]

A person who constantly believes he or she is ill or about to become ill.

Cognizance WOW very intense but so real.

Sometimes its hard to get family to understand the amount of pain we are suffering. Some of my family members get it most don't.

Take care
Rose
Posted 6/9/2011 4:05 PM (GMT 0)
Fibro. makes me feel like a hypochondriac. :(
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