I feel guilty whenever I look at my family, the fibrolegacy?

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Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/6/2008 10:03 PM (GMT -7)   
Although now much improved I remember the times my 15 yr old would hold me while I would sob ...
I had to try not to let my pain show around my husband, I had to be ok because he couldnt handle it and had no patience.

So I would try to have my breakdowns in the shower but my daughter was there for most of them , in the end she was the only one who could calm me. Once she said to me she was afraid that she would come home and find that I had (harmed) myself, thats when I realised how everything affected everyone, my husband in one way, my daughter in another. I am much better now thanks to new medications but even though on the surface things are better, im not like her friends mothers, I feel the distance now that I am well that they have put up a wall to protect themselves in case I get bad again. I love my family so much but thanks to the fibro there will always be that wall and physically I cant be there for them but at least now my daughter can come to me to talk she knows that, about anything that is all I have left thanks to fibro. And things will be only just ok with my husband whom I love, but only if im ok.

So I guess I have to stay ok . Dont beleieve that things can go back to what they were before, i beleive you have to find a new normality and guess try not to always be wracked wth guilt for something that cant be helped. I fear I will gt sick again

Has it affected your family,do they treat you differently now, do you feel guilty, and alone even when they are there sometimes



not to be gloomy , just wanted to get it out there. Just wanted people to know its not all physical. What has it done to youse behind the scenes.

(Gentle reminder... Please read rule #1 in the Forum rules ~Jeannie)

Post Edited By Moderator (Jeannie143) : 8/7/2008 7:47:24 AM (GMT-6)


getting by
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Date Joined Sep 2007
Total Posts : 40595
   Posted 8/7/2008 6:04 AM (GMT -7)   
Hi Sue,

I guess that I am fortunate, my husband is very understanding. In fact before I was dx with fibro, he wondered if it were chronic fatigue. He has been very good to me and nurturing.

There was a time when I couldn't participate in family get togethers due to the illness, it was hard for me. But then I found when I was around the kids and grand kids, I felt better. I can't explain it, but it happened. Granted these are his kids, I didn't have any of my own. But there was something special there that seemed to make me feel better.

I have found that I am more active due to the malic acid/ magnesium supplement. I think that everybody should give that a try. It doesn't work for everybody, but it truly helps me to feel better and be more active.

I know it is hard when you can't participate in the daily activities that you are use to. Embrace that and grieve, it will get better, I promise. It is just a stage that we go through with this nasty disorder.

I hope that you can feel better soon and that you can embrace your family and have their support. It is hard, especially when you are first dealing with everything that goes on with fibro.

Best wishes for a wonderful day
hugs, Karen...
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 8/7/2008 6:40 AM (GMT -7)   
Suez having fibro is not easy and when you have depression problems also it makes it worse. Please don't even talk of suicide that is so unfair to your family. You said you can talk to your daughter that is actually a biggy. There are some girls that don't have a mother to talk to and some mothers that don't have their daughters to talk to.
 
You have to find the good in life and not dwell on the bad. Let the guilt go you didn't ask for this DD (darn disorder). Being down on yourself is just going to cause you stress and stress makes fibro worse. This is what we have been given and it's up to us to figure out ways to live our lives with it. I hate having fibro too but I to keep a positive attitude and think of the things I can still do. I can't do the things with my grandchildren I would like to be doing but I can still make a lot of memories with them by doing the things I can do.
 
Try to educate your DH on fibro and try to get him to open up about the things that are bothering him.
 
You have come a long ways Suez, keep we will do our best to help you stay positive about life.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Jeannie143
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Date Joined Apr 2004
Total Posts : 6056
   Posted 8/7/2008 7:05 AM (GMT -7)   
These are some things that some of us have said in the past about fibro and guilt. Hope this helps.

Jeannie143 said...
Guilt never enters the picture. Do you feel guilty because you made dirty diapers as a baby? Heck no! You couldn't help it. That's how it is with fibro. And a sense of humor goes a loooooooonnnnnnngggggg way! When I overflowed the sink in the bakery my son said the walls in the basement needed washing anyway. When my hands don't work and I drop something and it breaks my hubby makes jokes about me trying to get a new set of dishes. We laugh and we cry together but we just keep going! That's the secret... As Winston Churchill said, "Never, never, never give up."




Maura said...
"Why not print out all the replies and let your families read them. Unless they are thick as planks, they will see the results of this DD and how it can sadden a person, a really caring person, to the point they lose track of the reality that it is the Family as a Whole who can join together to help make life more joyous for everyone.

Fms is not about feeling guilty, making others feel guilty or guilt itself. It is about living with chronic pain and finding ways to live our lives with as much normalcy as we can. Its about those around us, trying to learn as much as possible how to be part of our lives without feeling like our Keepers. Its about Love and reaching out, by both our families and Ourselves!!!

Its about Not Being a Victim!!!

Its about Being an example for our kids, whose own future is still up for grabs!!!"

~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

Post Edited (Jeannie143) : 8/7/2008 8:10:26 AM (GMT-6)


its_chelle
Regular Member


Date Joined Aug 2008
Total Posts : 46
   Posted 8/7/2008 7:15 AM (GMT -7)   
Suez,
 
I think we all can understand what your going through, the ups and downs of it. I, too, often think, man are my kids going to remember me as the couch potato and not remember the good things? They already ask me why I sleep so much. If we all go shopping, on the way home, they will say I know what Mom is going to do, SLEEP! Then they get upset because they can't play outside while I'm sleeping. So finally I had a talk with them. I told them I don't sleep because I want to, I sleep because I have a sickness and if I don't sleep, I will get even more sick. My kids are 10, 7 & 4. So, I try to do the little things that seem to make them happy, such as reading, coloring or board games. We also do alot of girly stuff, like painting nails & doing hair. So even if I am the couch mom, hopefully they will remember me like; mom always played games lying on the couch, etc. LOL I try to make the most out of my good days by being outside with them.  I've only been this way for 6 months and my kids remember me like this more than they remember the past. It's sad, but I don't give up and I keep looking forward to the good days when I can give them something more to remember. When she gets older, she will understand so much more. I'm sure you have given her her own little memories that she will cherish forever.
 
I'm very lucky that I have an understanding husband. I wish I could give advice to you for that, but I can't because I'm not in that situation. Maybe give him a print out about your problems or take him with you to your doctor appointment and let him hear and see for himself that your not making this up, that you can't just snap out of it, and that it is real pain. Maybe having a doc tell him will make the light bulb come on. tongue
 
As far as affecting my family, sure. Can we make plans for the weekend, no. I don't know if ill be sick or not. But there are many other ways to spend time together. Maybe going to the movies would relax you enough to get your mind off the pain long enough to enjoy yourself. And yes, I do believe you have to find a new normalcy to things. The past is just that, the past. You will have to change things and hopefully you will find a happy medium.
 
Sorry for the length!
Best of wishes,
Chelle

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/7/2008 10:00 AM (GMT -7)   
I just wrote a post to  you and was finishing the last sentence and lost the whole post!  mad    I'll try again.
 
First of all, you ARE there for your daughter.  You even said that she knows she can come to you and talk to  you about anything!  That's what is important.  Just because you can't play football with the kids doesn't mean you are not there for them! 
 
My children have never really seen me when I was healthy.  I have Crohn's disease and suffered many years with it.  My three children were ages 4 and under when this started.  Then fibromyalgia hit!  Talk about someone who couldn't do things with their children!  If it wasn't the pain from the fibromyalgia hindering me, it was the constant diarrhea that stopped me.  I always felt badly that I couldn't do what other parents were able to do.  It really bothered me that I couldn't even take my kids on a picnic!  I don't know why that bothered me so much, but it did.  But, I did everything I could.  I was home for them and they would come to me for help.  They still do as adults.  I was a room mother most years when they were younger.  I knew I could survive three parties and it made my children so proud.  I wouldn't eat all day so I could be on the sidelines of the soccer and baseball games, and I froze watching my daughter in marching band at the football games.  I had dinner on the table every night for our family meals.  The kids helped out, too, by doing their own laundry and helping me when necessary.  After all, that's what families are all about.  They love one another and help one another.
 
A few years ago I was talking to my, now, adult children about how badly I felt about not being able to do the things with them that other parents were able to do.  The tears started to flow down my cheeks.  My children were sooo surprised that I felt that way!  They said I was the best mom in the world and that I was better than their friends' moms!  They said I was always home for them and they could depend on me.  So, I had beaten myself up for years for no reason!
 
Your daughter understands more than you give her credit for.  Start to really look at your blessings.  Your daughter would be the starting place.  There is a lot of good in your life but you are dwelling on the bad.  You are capable of more than you realize.  We will help you, with ideas, on how to live a full and enjoyable life with fibromyalgia.  It can be done because I have done it!  Be kind to yourself.  As Jeannie said, we certainly didn't ask to be in chronic pain.  But, Sue, remember that it could be a lot worse!  I'm actually thankful that, if I had to be sick, it was something like the illnesses that I have.  I can still live my life with these problems.  So can you.  Just take one day at a time.  You certainly can handle that.  
 
Sherrine 
 
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


its_chelle
Regular Member


Date Joined Aug 2008
Total Posts : 46
   Posted 8/7/2008 11:41 AM (GMT -7)   
Wow Sherrine that was some great words of wisdom!
 
And your right about being thankful its this illness and not something much worse, I think that also. I try to think of other people with worse problems. I'm thankful I don't have to get stuck with needles everyday and that I'm not bent over the toilet throwing up. I'm thankful that I won't die from it. I'm thankful I won't be dis-figured from it. There's much that can be said about it! I also know for every good thing there can be an equally bad thing, or vice versa. It's all how you look at it. So Suez, chin up girly! Your not alone!
 
Chelle

kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/7/2008 11:48 AM (GMT -7)   
Sue,
 
I could answer your question very simply with a huge, "YES!, My fibro affects my family," but it wouldn't be normal for me to leave a one sentence answer.  BTW-I hear most of you screaming, "She's right!" tongue
 
Anyway, I am in kind of a reverse situation than you are, but it's still very similar.  My family-mostly my mother-just does NOT get what I am going through, and she doesn't seem to want to get it.  I just talked to her on the phone yesterday, and I swear, she asked me (for the 50th time), "So, you DO have a dx of fibro?"  I almost lost it, but I kept my cool and reminded her that yes, I have had a dx since June.  We talk at least twice a month, and she just can't get it through her head that I have fibro.  She also doesn't understand that I'm not just tired all the time.  My sister also has fibro, but she doesn't seem to have the unrelenting pain I have (I'm not saying that I have it worse than she does, because in all honesty, my sister and I don't talk.  I'm just getting all this info 2nd hand through my mother).  So, my mom thinks that if my sister can still work and do "everyday" things, then I should be able to, also.  As most of you know, I HAD been planning on moving home at the end of the month-with my mom flying out here to help pack things up, etc.  Now, she's telling me that she can't come out here, so I am going to have to do it all myself.  I told her over and over again that there was no way that I could physically do that by myself, and I really don't have anyone to help me-unless we paid for someone to do it. sad
 
Anyway, things are still left up in the air, so I don't know when I'm moving.  I told my mom that I would move ASAP if it were possible.  I really had a pity party/sob fest after getting off the phone.  I just feel so helpless, and yes, I am angry that my mom doesn't get it.  How is it possible that a nurse (a Hospice nurse) can be so blind? confused
 
Sue, I'm sorry for what you are going through, and for hijacking your thread to complain about my own problems.  I just wanted you to know that I understand how you feel-even if the roles are reversed.  It sounds like you have an amazing daughter.  I hope you let her know that everyday. :-)
 

FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
 
"I'll take the Chivas instead"
-Kelly Clarkson


mamakitty
Regular Member


Date Joined Jul 2008
Total Posts : 56
   Posted 8/7/2008 2:05 PM (GMT -7)   
WOW, can i ever relate to all of you.  I posted this same topic some where  but could not remember where anyway i also am so blessed to have a husband that has been a rock for me, he watches over me all the time, he makes me stop doing things when he thinks i have done enough for the day etc.  I love him so much, he is my best friend.
 
Now for my children, I have two daughters and one son and they are all married and they know and understand what i am going through, but, then comes my mother and my two brothers and one sister they feel that there is nothing wrong with me, my other sister also has fibro and alot of problems she almost died and they did not believe her on that either, you could see it on her but mother was mad because she wants all attention on her.
 
So dear friends how Blessed we are to have found each other so we can help each and i learned a long time ago that there is no one or nothing in this world worth taking our life for. we in our own way are so important to some one even if we don`t know who it is.
 
 
 mamakitty
 
Fibromyalgia,Osteoarthritis,Chronic Fatigue Syndrome,Psoriasis,Lupus,Low Thyroid.Migrains
 
 
Levothyroxine,Sertraline,Estradiol, Nabumetone, Lisinopril, Methotrexate, Amitriptyline Trazodone, Requip, Imitrex.
 
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/7/2008 2:27 PM (GMT -7)   
Mamakitty, you are absolutely correct!  And you know what?  We are important to each other on this forum.  I know I care about everyone here.  That's what makes this forum so special.  I don't think there is another one like it on the web.  So, when you are down or happy, just come here and share with your family that understands what you are going through.  You definitely are my fibro family!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 8/8/2008 7:24 PM (GMT -7)   

Family is important and I know what it feels like to let them down.  My family has been affected by my illness.  I worry terribly about my youngest daughter, she is only 10 and worries so much that I will die from this.  I have had her doctor explain to her that Mom will be ok, she just hurts a lot.  I know she understands what he is telling her but she still worries.  We just returned from a four day trip to Illinois that has wore me out, she keeps holding me and stroking my back. She is an absolute sweetie, I hate what this is doing to her.  On the positive side of this, I do believe that someday she will help others.  Her speech therapist has agreeded with this, the child is so sensitive to the needs of others.  My older children handle it better but get disappointed when I can't do something (I hate seeing the looks on their faces).  I don't think there is much that any of us can do, we certainly can't get rid of this disorder.  Just love our families and know that all will be ok.  I do know what this can do to a marriage, we have problems that we just can't seem to resolve, a wall as you say, but I'm going to keep on trying.  Hopefully he can accept who I am now, if not, then it wasn't meant to be.

Don't be to down about it, we all have those really bad days (or weeks, maybe months) but know that we are all here and care.  We can all work together to find a new way of life, a good and positive new way of living with this disorder.

All the best!!

Meggie


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 8/9/2008 7:53 AM (GMT -7)   
Meggie, I have a nine year old grandson that is very sensitive like your daughter. He came unglued one time when his little sister ran and jumped into my arms. I agree that these children will grow up to become very compassionate people.
 
As sad as it is your children are learning that all is not perfect in this world and that is not a bad thing. Some of the greatest people I know did not come from perfect families. On the other hand some of the most spoiled and unappreciative people I know had everything given to them and done for them.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 8/9/2008 12:39 PM (GMT -7)   

Marlee I agree.  I still have a lot of guilt but I'm beginning to realize that all will be ok and my girls will be better people for having gone through this with me.  Another positive thing that has come out of this is my girls are a little more independant, they still like me to do things for them but I've noticed that they are starting to do things for themselves.  I think we are headed in the right direction :-) .

Meggie


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/9/2008 1:23 PM (GMT -7)   
Meggie,
 
This is a little random, but after reading your post about your 10 year old daughter, it just brought me to tears.  When I was her age, I had this constant fear of something happening to my mom.  She had a blood clot in her leg when I was about 6 years old, and I was terrified that she would die.  As much as I have complained about my mother lately, I have and will always be a Mama's girl.  Perhaps that's because I'm the baby of the family.  But, I was a very sensitive child, too.  Actually, y'all would probably be really surprised just how much of a sap I really am. redface    I cry at songs and certain TV shows and movies rip my heart out.  LOL-and obviously, Meggie, your post turned me into a puddle of mush. :-)
 
I'm sure your daughter will grow up and make a huge difference in this world-by being completely selfless.  It sounds like she is very intuitive about the world around her.  I hope you remind her just how special that makes her.  She is unique and there aren't a lot of people like her in this world. :-)
 
Anyway, I didn't mean to get all deep and sentimental, but your post touched me so much.  Luckily, I always have plenty of Kleenex. sad

FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
 
"I'll take the Chivas instead"
-Kelly Clarkson


Southernlady
Veteran Member


Date Joined Jun 2008
Total Posts : 844
   Posted 8/9/2008 4:27 PM (GMT -7)   
Kelly, I just read where you might not get to move........I was hoping you would get back down south before too long.  Let us know how it is going with your mom.  Maybe she will change her mind before the end of the month.
 
Sue, how blessed you are to have a daughter like that.  I have two sons and they are very insensitive to my Fibro.  My oldest son that is a teacher says it has been proven that it is just in our head.  It hurts a lot but my dh is very sensitive to my Fibro. 
 
Cherish your daughter while you can.  At 15 it won't be very long before she will be out of school and away from you.  I sometimes still have the empty nest syndrome.
 
God Bless!
Shannon
Of all the things that I have lost, I miss my mind the most!!!!


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/9/2008 5:26 PM (GMT -7)   

Last night my daughter had a moment,  she started in a high pitch voice of how come the house shuts down at ten and she is sick of how we arent like anyone else.  It led to an argument because as I said to her she goes to her room at 10.00 has a telly, computerand stereo so its not like its shuts down.  In the morn she came up to me and put her arms around me teary eyed and apologised.

I am so glad my posting has brought so many people out into the open to talk.


Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 8/9/2008 5:49 PM (GMT -7)   
I bumped up a post named a "letter from fibromyalgia" for those of you still having a hard time getting through the hard heads of some of your family.
 
There is also one "the spoon theory" and "tears for a day" that is good.
 
Shannon it is so sad that educated people don't get this. Did all of us energetic hard working people just decide to become fat and lazy one day and sit around and let life pass us by. I sure the heck didn't make that choice.
 
I try everyday to do as much as I can. I don't stop til I have to and that is the way I plan on living the rest of my life. If anyone in my family has a problem with that, well it's their problem, not mine. tongue
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Southernlady
Veteran Member


Date Joined Jun 2008
Total Posts : 844
   Posted 8/9/2008 6:38 PM (GMT -7)   
Marlee, I feel exactly like you do.  I don't know why my son thinks it's all in my head.  I'm still holding down a full time job and putting up everything from the garden that I can when I get home at night.  If I ever say anything about being exhausted he doesn't understand me at all.  I guess he thinks I will always go on pushing myself like I have in the past.  I've always been in really good health except for my arthritis and I never complain very much about it.
 
I'm a little depressed this week, maybe because I'm just getting started back to work and I'm really exhausted, but usually I keep myself all bubbly and smiling for everyone, including him.  So he isn't used to Mom being down and out and doesn't want to think of me having anything wrong.
 
God Bless!
Shannon 
Of all the things that I have lost, I miss my mind the most!!!!

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