A FORM OF RELEIF----PLEASE!!!!

[spitfire989]

In agreeance with Doni's post of the struggles we have to endure on a daily basis and the fact that this forum is a good form of  releif for so many, I also must ask if there is another or more areas or sites that might possably offer help?-----I ask cuz in addition to having to deal with the struggles of what's going on in my body, I have to deal with most or really ALL of it solo. I am D, with 2 older kids, and still work cuz I must.------But what REALLY REALLY bothers me the most is as I mentioned in Doni's post is the fact of being told EVERY day by my family, that cuz I'm sick or whatever, that I'm nothing but a burden and that I impede on their lives.----And I "try" to tell them, "I never asked to be sick" or whatever, but it does'nt matter.----As I said --to them I'm a burden. And have that DRILLED into my ears every damn day.---That my "ears" hear it---but my "heart" remembers it.---I have told my "family" that I will do all I can to be self sufficent, but they told me--"Yeah right".---To me that is a terrible thing for a mother to tell her daughter!!---I told a friend of mine, that I always thought she cared for me or whatever, but now I question that.--Or my aunt that says, I NEED to concider what "damage" this will do to my mother;s life, and her happiness.---Good God folks!!! What about what IT does to my life? Or the life I used to have?---I told them, at least when I'm at work, I'm FREE. Free from being told I'm a burden, that I'm "screwing" up their lives, that I'm a nuisance, whatever.-- And that at work, at least my "people" (  I HATE to call them "patients") are REAL with their emotions/comments/ whatever.---(  I work in Hospice and at least they are REAL to me.------So, I guess my question is---in addition to this EXCELLENT~~~WARM group, is there another froum that helps with the pain caused by family or friends?---Cuz the pain that they say to me ALL the time, or EVERY day, is far WORSE than the pain of the " IT " in my body.  And I'll be honest---it hurts and bothers me!  And I would like to be able to talk about it.---But, then again, one side of me says, Don't,   Don't bother anyone else about your " issues" and just keep going the best ya can.----Well, guys, there ya have it.---But, if any of you guys could give me an insight into maybe finding out if they offer a forum for those of us that need to deal with  the idea of being a burden and a problem,---PLEASE let me know.--K.---It's NOT that I'm " depressed"  cuz beleive it or not,--I'M NOT, which is probably a surprise.--But, I feel I will be strong by myself and " Handle" the issues of being sick and all it does to my body, whatever.-----My "people" have taught me to be strong and go on.---Even if I have to do it alone or solo, because of "circumstances" .  And I will.  CUZ I'M NOT A BURDEN!! OR AT LEAST DON'T THINK I AM. Cuz I NEVER, NEVER asked to get sick!!-- ---But, as I said, if any of you guys out there can help me , or help me find a forum for those of us that have to go through this---I WOULD BE VERY GREATFUL.------Sorry, for having to bother you guys with this issue, but I really would like to be able to talk about it.------

[Heather3418]

I was really touched by your story.  You've gotten some great advice from our members.

Sweetheart, would you do an old lady with MS a BIG favor?  When you post, could you separate your sentences into paragraphs?  With my vision problems and vision issues with other members, it's much easier to read a post that is divided up.

I would so much appreciate it and thanks in advance for humoring an old  lady.

Hugs,
Heather

[Sailorsong]

I do know exactly what you have been talking about. My ex was like your mother and after after I got sick it got unbearable for me to take any longer. This was one of the reasons I divorced her after 23 years of marriage. I guess I kind of took the same out as your older daughter in that I got as far away from my ex as I could. Luckily I met a woman in Florida that was the kindest most caring person I have ever met in my life. It renewed my faith in womankind to meet such a woman. The main thing she helped me with was by inspiring me to write in song lyrics about my feelings in order to work through the issues. She also inspired me to become a minister in order to better help others as she had done with me. I find that by helping others it helps me to not start feeling useless again as my ex had made me feel over all of those years of berating me.

Please take care of yourself!

Dennis

[spitfire989]

Thank you for getting back to me---It means alot!----Yeah, family can be so damaging!!!!MORE THEN ANY DAMN DISEASE!!!!----My problem is I will NEVER  be able to tell my mother the pain she causes me.---I've tried over the years and she ends up making you feel like you deserve it.---So, after awhile I stopped doing it.---Even though the pain I carry in my heart from her actions/comments are REAL.-----It's like I told someone, when one of my "people" pass away, I wish to God it was me and not them,---cuz then at least the pain would end!!!!---But, even in death, my mother would find fault in me!-------I can't get her to see that I'm NOT A BURDEN OR DISGRACE  because I'm sick!!!--------At least I don't think I am.------I will check out some of the options on the forum to see what's out there for me.---Cuz I can't take anymore of the pain and hyrt.----Well,again, thanks for getting back to me.

[spitfire989]

Hey, thanks for getting back to me.---NO, my family has not always been this way---at least to those in the "family" that are'nt a burden or disgrace.---When my grandmother was here,(alive) she was the one I turned to over and over. And would of never allowed this to go on.  We come from a big Italian/Irish family, and yes name is important---but to my grandparent's---NOT AT SOMEONES EXPENSE OR EMOTIONS!---But, to my mother, I've been a burden since I was little.---And my kids can never do anything right.---To her, could never do "right".---She tells me all the time that my actions/ the way I am is a disgrace to HER name.---She works in the public and ALWAYS worries about what the public thinks fo her.-----To "them" she's wonderful!---Well, if they could see how belittling and condescending she is behind closed doors!------I will check out some options in the forums to see what's out there.---Cuz the truth of the matter is I'M NOT A BURDEN OR DISGRACE!!!!   At least I don't feel I am.---------Well, thanks for getting back to me.---I'll keep ya posted.

[spitfire989]

Thank you SO MUCH for getting back to me.---It means ALOT to me.---  To answer some of your questions~~~~NO, I don't live with my mother. She lives next door,-which is just a bad.----And Yes she has (to me) always been very negative.--To me and my children.---That is the main reason my oldest daughter moved out of state to maine--(as she puts it--to ESCAPE her gramma's negative attitude) and to this day hates to come home, cuz all gramma does it yell and be condescending to her/her life/whatever.-----Growing up, I could NEVER do anything right in her eyes. And to this day--it has NOT changed.---Sure, there were times growing up or since then, that I ran into "times" I needed her "assistance" with Financial help (especially after my ex got up and walked out on me and the kids) (rumor has it, since then ended up in jail or whatever)(and I NEVER allowed him to see or correspond with the kids).----Or needed her "assistance" after our house burned to the ground 2 years ago, and we lost everything.---She blamed ME for the fire even though it was determined that it was PURELY electrical.--She was so cold to me and my daughter Jenni after the fire.--We managed to get another place about 6 months after the fire.--(with her help, so that she could continue to control our lives).----As I said, my oldest daughter left to escape her and growing up either her or her sister could never do anything right.--The HELL she showed me growing up, she showed towards my kids.--And I could/can NEVER say anything to her because she has helped me and the kids out so much.  She "controls" us/ me with her money.  --It's like to her,--I / Them are endentsured servants to her.-----She ALWAYS  worrys about how I make the family name look bad.----She works in the public and ALWAYS worries HER name will look bad.---She is real good at putting on the fake persona that she is a Houty Touty, and sucha wonderful person.~~~Well, if people could see how she is behind closed doors!!! They'd see for themselves that she REALLY is a cold person who ******* and belittles ya constintantly!!---THEY DON'T SEE THE DAMAGE SHE HAS DONE TO ME INSIDE OR MY KIDS!!!!---To the  public, that supposeably know her---she's wonderful!------And to your other question---Yes she thinks I'm "faking" all of the pain, meds, tests, whatever.---Even though she has gone to some of the appointments with me where the Dr has pretty much told me that the likelyhood of me having MS is "Significant".---(She would "insist" on going to the Dr's with me) just to "Be in Control" as my friend told me recently.----Until I STOPPED telling her when my appts are.So, she would'nt go with me.------And as I said, Yes, she tells me ALL the time that I'm a burden.--And that I (as she put it the other day) even though I'm in pain 90% of the time, sick or whatever---I DAMN WELL BETTER CONTINUE TO WORK  CUZ I'M (her) NOT GONNA SUPPORT YA!!!!!!--- So, yes, even though alot of times it hurts to move and ya have all the BS of brain fog, vomiting, whatever,  I go to work.---Cuz as I said, I feel SAFEST at work with my "people".---I told a friend of mine--it's PRETTY PATHETIC that a bunch of dying people show more compassion then my own family!!!!----And awhile back when I SERIOUSLY concidered driving my car into an on coming semi cuz I couldn't take her S&$# anymore---It was my dedication to my people that "prevented" me from doing that.---NOT MY FAMILY!!!------And I have "tried" to tell her over the years that her comments/actions/whatever  hurt or whatever.   And she always ends up making you feel like YOU DESREVE IT!!!---_So, I gave up trying to talk to her.-----Besides the damage was already done.---I just ALWAYS vowed I'd NEVER be that way with my girls.---And I never was.---No matter what they needed or what they were into, I was there 100%..---And still am.---Whether the kids need money to help with bills, or whatever.--To my youngest getting pregnant as a "surprise".--NO MATTER. They know that no matter what--Momma's ALWAYS there for them.--And that I would/will be til I take my last breath.--And even then, it would be to tell them I love them!!.---To answer a question---NO, I have probably heard enough times to count on my fingers, the times my mother has said she "loved" me.----And I'm not sure she's told the kids that.---( To this day, I help them out BEHIND her back) Just so we don't have to hear her ****.--(EVEN THOUGH THEY'RE MY CHILDREN AND I'D DO ANYTHING FOR THEM!!---THEIR NOT HER'S!!!)   I just DON'T understand why she thinks or sees me as such a failure/burden!  Cuz I'm NOT one.------Sure, I may have not taken the path in life she "thought" I should of taken, I may have turned to her when my "chips were down", or that now I'm not in the best of health.---But, I don't feel I deserve to be belittled and hurt, every damn day.-----I just know I can't take the pain anymore.  I just want the **** to end!!--And I don't see that happening.--Now or in the future.---I tried to tell her the other day, when she was telling me what a BURDEN AND DISGRACE I AM, whatever I was,---that I will do all I can to be self sufficent when the day comes that I can't work anymore.--Her response was--"Yeah right, let's be real--I'll still have to be the one to take care of you".--I told her, that's not true, I should be able to get disability or public asst, if need be.--And her response was--oh sure--be a welfare recipiant!--That'll make the "family name" look good!----------It's like I told a friend---it breaks my heart every time one of my people passes cuz I wish to God it was me, and not them.---That way the pain I feel would end!!!!---Then my mother can't drill into me what a FAILURE I'VE TURNED OUT TO BE------This IS all so very tough on me,--And so hurtful.----I will check out the sites you suggested.   And THANK YOU for letting me vent on this forum!---As I said it means alot to me.---Something like this forum might just be the thing that "prevents" me from going over the edge or into the semi.----I will say this though----  even in death, she'd find fault in me.---It'll NEVER END!!!.

[monotreme]

Hi Spitfire.  I am very sorry for what you are going through.  I feel your pain.  I am not the one with MS, but my husband is.  For the past four years, he has been sick, and for the past two years, he has been especially symptomatic.  In August, after going to 8 or 9 neurologists and being told he was a psychiatric case, he was finally diagnosed with MS.  

My family really didn't want to hear that my husband was sick or that I needed help.  It was way too much of a burden for them to have to help me.  After all, according to them, I had never asked for much help in the past, so why should they help me now??  I wanted to scream at them that I need help because I have alot of kids, and a husband who is losing his use of his legs and is in pain all the time.  So help me!!!  Give me some relief.  Help me run errands.  Help me not feel so alone in this battle.

One time for my husband to go to a doctor in California for a second opinion on his endocrine disease, we actually had to fly across the country on a Thursday and fly back to the East Coast on Friday after the appointment!  And why??  Because my family had weekend plans and no one would stay with our children.  I was a burden.  And they had parties to attend.  See what I mean?  Of course, I felt so lost and hurt.  So abandoned.  I think emotional abandonment is very hurtful and it sounds like that is something you are feeling.

There have been numerous times that my family has let me down.  Too busy to stay with our children.  I am pretty much last on the list of priorities.  Of course they don't say this to me out right.  They just always have other plans, or ask if I can get right home since they can't stay.  And I am slowly becoming numb to this and pretty much expect it now.  So I start to not ask for help any more.

Now to get on to my husband's family.  My husabnd's brother got tired of hearing how my husband needed help.  At first, he would come and help repair something in our house.  But as each neuro told my husband that his symptoms are in his head, or that he doesn't have the nine lesions for a diagnosis, or that he was an atypical case and they couldn't help him, my husband's family changed.  

They seemed to become more on the side of the neuros.  They started questioning whether or not he was actually sick.  Or that maybe I was at the root of it...encouraging him to not use his legs to jump or run or swim in our pool.  And maybe my husband was imagining his illness just so that he could be a burden to them.  His brother actually told me one day that I need to get on with my life without my husband and that I wasn't being a good mother since I wasn't taking our kids on trips without their father.  That I needed to get out there and go to Disneyworld, Williamsburg and forget what my husband was probably faking.

So I finally exploded.  I really did.  My brother in law heard my anger and hurt for at least 20 minutes on the phone one day.  We didn't talk or communicate for six months.  Finally, we spoke on better terms and worked things out.  With the diagnosis, things with his family changed for the better.  Now we get support from them.  But I still remember the hurt, and worry that we will be hurt again.  It's difficult to recover from a huge emotional hurt and feeling of being let down and abandoned.  

So there is half a good outcome.  There are still members of his family who think he looks too normal to be sick.  But my husband has been able to compensate for his "invisible" symptoms.  Eventually everyone in his family will see his illness.

So this long story is to tell you that you are not alone in your hurt.  People can be mean to those who are sick.  They look at the ill person as being too "needy".   It inconveniences them to have someone close to them sick and needing help.   I wish I could tell you that it will get all better, but I can't.  I still feel lonely, and let down.  But there are sometimes better days and you will find the strength somewhere in that strong soul to get through this.  I know you will.  I also encourage you to verbalize your hurt to your family.  Let them know how you are feeling and how disappointed you are in feeling like you are a burden to them.

Please feel free to express your feelings to our forum and we will all help as best as we can.  You have friends here and willing listeners.

Elaine

[Lulu54]

Hi Spitfire,
I sure wish you were in my family because I promise you would never ever be treated this way.  Has your family always been abusive to each other or is this a new pattern?   You are fortunate you work in the medical field and know what you are suffering is real, and you sure the heck aren't doing this for the attention.

Wonder what kind of group would we suggest for you - its not depression, it sure doesn't sound like codependency.  Perhaps we need to look for a "my family is F$%^d up" group! LOL

Take a look around MedHelp at some of the groups that are out there and perhaps one will strike a positive note with you.  Medhelp has dozens of forums - just stay away from the depression group - those folks are really depressed and will bring you down pretty quick.  

And please know you are always allowed to vent and rant right here on the MS forum.  You want sympathetic ears - we got dozens of  them!!!!!

My best to you, Lulu

[Quixotic1]

Oh, Honey, you are going through a person's worst nightmare.  Of all the people put on this earth to protect us ande build us up - our parents are first in line.  Beyond that our families are the ones to protect and bugffer us against the world.  they are there to teach us strength.  When a parent belittles a child or the family turns against the child - it is a betrayal beyond any other.  I cried when I read your post.

Above all every person deserves to be respected and believed.  Every child deserves to feel worthy and important, safe and valued.

You are the child in this picture.  Where your mother is concerned you will always be the child in some sense.  The criticisms strike through your heart no matter how unfair you know they are!!   What you are describing here is the purest form of emotional abuse.  And you will need to approach it as any abuse victim would need to.

This is not an area of expertise for me, but others here know more about it.  I find it hard to fathom the reason that any mother or aunt or sib would ever treat a family member this way, but I do know it happens so often that it would break our hearts if we knew.

I saw this kind of abuse in my family.  It was my grandmother toward my mother.  Her insults were far more subtle and interpersed with times of real loving.  In that case my grandmother was very self-centered and immature.  She could not tolerate losing any attention.

I did a quick search online and I used the words:

emotional abuse forum

This search brought up several forums and discussions on victims of emotional abuse.

Here is one.

http://www.psychforums.com/viewtopic.php?t=27393&sid=f701b0fefaf203be41afcd11ef5c22f8

If the link is deleted send me a private message and I will give you the link.

Here on MedHelp we have an Abuse Forum where you might be able to find someone also to talk to.

We also have a Doctor-Patient Mental Health Forum where a psychiatrist answers questions

http://www.medhelp.org/forums/show/122

They allow only so many questions a day, so if you do not get in right away, you need to keep trying - especially very early in the morning.

You are right.  You do need to talk with others that are going through it and also you need to see a counselor who is skilled in this topic.  It is very hard to maintain your self-respect and your esteem while being treated like this, though I hear your strong inner spirit (your "spitfire") in your words.

I gather you live at home with your mother.  Is that true?  Is that your only option?  Do you think that your lack of a diagnosis is part of the problem?  Do they not believe you or do they blame YOU for getting sick in the first place?  Is your being sick a nuisance?  Before my diagnosis I faced some real disapproval from my father for being lazy and high-maintenance.  The diagnosis of MS shocked him, and now he mostly treats me with pity.  But, he doesn't berate me any more.

I encourage you to do the search for forums on emotional abuse.  I suspect you will find many people in similar situations.  We have had several discussions here on similar topics.  The spouse was resentful (or even left) because of the disease.  The kids were abusive.  Families were uncaring and mean.

I know others will be by to share their experiences.  Please stay with us and unleash your fury and your hurt here.  You NEED to talk about it.  You NEED to voice how bizarre and irrational and unfair it is.  And most of all you NEED to know that it is not your fault.  No one can say that enough.  It's NOT YOUR FAULT.

Take care

((((((HUGS))))) from me

Quix