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Posted 8/20/2008 2:44 AM (GMT 0)
I dearly love my family but I can be doing the dishes, hunched over in pain with tears rolling down my face and my family literally 10 feet away watching the tv laughing.  When I ask for them to do even small things I feel guilty.  I have been lucky not to of needed to work and have put everything into the family but now I have to say   they are spoilt rotten..... I have to ask for even the smallest of things.  Little things that should occur to them but dont.  There way of dealing with my fm is to pretend I dont have it or worse that I dont exist.  It hurts me very deeeply.  I have told my husband if I get bad again there are to sit down and work out stratergies and work rosters  in basic form.  I dont want to always have to ask.I know there way to deal with it is to pretend its not there, im not there but god thats so hurtful to me.  How on earth can you miss a person crying 10 feet away.....  dont get me wrong I love them so much but if they were sick you wouldnt get rid of me from them.  Anyone else ...
Posted 8/20/2008 3:05 AM (GMT 0)
I saw this post and didn't want to leave you without any reply. I only mildly relate to it simply because I'm pretty much alone in my situation. No children, no other family, just the bf in the house. But yes, I completely understand why it is that you may pretend that you don't have it or try to ignore it. The number one reason that I do that exact same thing is that it's incredibly hard for me to ask for help. I've always been the one to step up and take care of everyone else. When I was young I took care of my grandmother, and then a little older I took care of my mother. She (my mother) was very independent and had a hard time asking me for help when she was getting older. She had raised me to be very independent as well. When she finally gave in and asked me for help I immediately responded only because I knew how hard it would be for me to ask that.

You may not feel like you have a lot of family support but you do have a family here. In the couple of weeks that I lurked before registering today, I found that people here do seem to actually care about each other. So, no matter how disheartening it may feel there, you have people here. And don't forget that.
Posted 8/20/2008 3:32 AM (GMT 0)
That is true Sue,

And you always will have us. I think at one time or another we all have been through or will go through this. You just might have to be more assertive as to what you need them to do. If they all pitch in just a little bit, then no one person would have a lot to do. They can help some with all of the chores.

And you shouldn't feel guilty for asking for help. I think I would set up a schedule now instead of waiting for a flare up. That way they will be use to it. It helps them in the long run so why not start now.

Best wishes for getting everybody together to help.

Hugs, Karen
Posted 8/20/2008 4:25 AM (GMT 0)
Sue, I too think you should start right now, before another flare up.  Maybe while you are feeling a little better you can schedule things for the rest of the family to help out with.  Then when the next flare up comes they will already be in a routine of doing a few things around the house.

 

My dh is understanding and helps out a lot but when I get home from work I'm so exhausted I have to sit down and rest for a little while and sometimes he can't understand why because he is so active.

 

When you need to vent, this is the best place to come to.  Everyone is so caring on this forum.  Keep in touch.

 

God Bless!

Shannon

Posted 8/20/2008 12:59 PM (GMT 0)

cry   Aww Sue,

I know how you feel. I cant understand why my family,(I live alone) members just dont seem to get it. I wonder why they cant even take the time to use their computers or even try to learn what this disease is about and what we go thru. I wonder if I am being selfish or just having a pity party for myself, but I have anger at them. I feel so alone at times. I finally just withdrew from any and all that dont try to learn.my stress levels stayed so high from my family thinking it is all in my head and expected so much from me.I let them make me feel guilty for being sick. But I had to get 'selfish' for my own good. My Doc told me that! He wanted me to reduce my stress, because we all know how destructive stress is especially with FM! Even good stress wears me out  lol. please take care. Next time, just dont do the dishes. Go lay down. Be selfish if  you have to. after all, if you dont take care of yourself as much as you can, then who will? I know  you love your family and I have no doubt they love you too. Maybe they are having a hard time accepting the fact you are as sick as you are! Please  take care,

Breath

Posted 8/20/2008 2:26 PM (GMT 0)
Sue,

 

I don't know how many times I've said this, but I certainly don't mind repeating myself. wink    I live alone-3000 miles away from my family-and they still don't get it.  So, if it's 10 feet or 3000 miles away, it's the same thing.  Strangely, after my dad got really sick this summer (he had a life threatening staph infection), I wrote him a long note, telling him both to get well, and then telling him what I was going through.  Apparently, I made the man who never shows any emotion cry. cry   My mom told me that he saved those cards-out of the hundreds he got (he's a local celebrity, BTW).

 

And then there is my mom.  Trust me, I am and always will be a Mama's girl, but I'm having a really hard time getting my mom to understand what I am going through.  I finally just wrote her an email and just laid it on the line-but all I got back was a defensive, "I know you think I don't care about you..." and "I'm a terrible mother."  rolleyes *SIGH*  This is how we have communicated since I was 15 years old.  But, I have decided not to dance that dance with her anymore.  I HAVE to tell her exactly what is on my mind.  I just need to learn how to do that without being sarcastic.  LOL-to those of you that know me, you know that is gonna take a lot for me! blush

 

Anyway, as always, I know I (and a lot of others) are right there with you.  The only thing that you can do is to tell your family exactly how you feel-as many times as it takes.  Oh, I'd say leave the dishes, but I am really anal about a dirty sink.  Funny since the rest of my place looks like Fred Sanford's junkyard! eyes

Good luck! :-)

Posted 8/20/2008 3:40 PM (GMT 0)
Suez this is so hard for people to understand. I don't even understand it all myself and I live it everyday. After five years my DH has become very attentive and helpful. I have some family members that really want to understand it and some that have never asked a question about it. Some still ask me stupid questions, like are you better now??? Those are the ones that have not bothered to do any research on fibro and never will. All I can do is provide info to those that ask and educate them.

 

I was surprised over the weekend when we went to a family reunion for part of my DH's family, when he told everyone what my problem is, at the "oh my, your in a lot of pain then" from so many. What they didn't understand is it's not so much the pain for me as the fatigue. 

 

My sons are grown and I sometimes think they are in denial. I really don't talk to them much about it unless they bring it up. I'm MOM the doer of all things, the one that plans all the family events and the one they grew up with as being able to keep up with three busy boys schedules and still have energy left over. That is the way they still see me for the most part. I think my youngest son that lives close understands it better since he sees what this has done to me more.

 

I know I was in denial when my dad had cancer until the last two days of his life when he really got bad. Young people don't want to think about their parents getting sick at an early age.

 

I think we all have our pity parties and hurt feelings over this. Last night I was in a lot of pain and one of my sisters called to have me e-mail a picture to her cause she is meeting with some old friends tonight. She was very excited and didn't ask how I felt or anything. She meant no harm and I know that, I e-mailed the picture to her. I guess from having been dxd for five years now and suffering for about 10 yrs I have become more understanding of others myself. I try to put myself in their shoes when I was healthy.

 

But you know we are always here for you and we do understand.

 

luv and hugs

Marlee

Posted 8/20/2008 4:59 PM (GMT 0)
Sue, I was just trying to find the thread all about this topic.  We have discussed it many times because this is common with fibro people.  It's so difficult because we don't look sick so how could we be sick!  I stopped trying to explain to my family.  They now understand after watching me for over 20 years.  I did, however, ask for help.  I did all that I physically was able to do and then would ask for help.  I hated to, though.  I'm a perfectionist and always think no one can do it as good as I can.  Dumb, huh?  shakehead

 

If there is something that you really can't handle and your husband won't help, hire someone to do it.  That should get your husband moving in a hurry!  tongue Your children should be assigned chores around the house.  You are a family, after all, and everyone should pitch in to help.  This also builds a good work ethic in the kids.  If they won't listen, they should spend time in their rooms and get no allowance until they do help out.  Life at home shouldn't be a free ride for  them.  My kids were doing laundry by the time they were in fourth grade.  If I asked for help, they always would give me a hand.  But, I didn't treat them as slave labor, either.  They had plenty of time to enjoy friends.

 

So, try not to let this get you down too much.  That will just cause you stress and that makes the pain worse.  Make a plan and have your family adhere to it.  It can be done.

 

Sherrine

Posted 8/20/2008 5:58 PM (GMT 0)

Sue,

I understand what you are going through.  My family is finally getting a little better but they still have a long way to go.  I have finally just stopped doing when I'm tired.  I don't clean, cook, or entertain (I do feel guilty though, I'm still working on that).  My house is usually a mess and when one of the kids needs clean laundry, I just ask "When was the last time you helped me, I have to much to do and I haven't gotten to that yet".  They still don't help much but the picture is getting a little clearer to them.  My kids are great kids too!  I'm not sure that they are mature enough to understand it all (they are 10, 13 and 15 - and yes they are old enough but I'm not sure mature enough).  My husband on the other hand, well he's not mature either.  He really has been trying to be helpful.  He has been researching fibro and doing a lot around the house (and yes I hate the way he cleans if you can call it cleaning) but he does not handle stress well, when he sees I'm sick he gets tense and usually snaps at everyone.  Even though I know he really doesn't mean it the message to me is, I hate that you are sick, it is interrupting my life and I don't like it.  I'm just taking it one day at a time right now.  But I do know where you are coming from.  My advice, just sit your family down and lay down the law.   Fibro is for life and your life has changed.  Your family needs to know how you feel.  They will never recognize that you are crying shakehead unless you bring it to their attention.

I hope I don't sound to bitter (I guess I am a little, it's a sore subject).  This forum has been wonderful for venting.  I feel better, I don't feel so alone.  I hope that things do get better for you.  Speak up and make them listen!

Meggie

Posted 8/20/2008 6:54 PM (GMT 0)
Suez, I think the key is time. Time for us to come to terms with our new life and time for our families to come to terms with our new lives. It's a progress that doesn't happen over night for us or our families.

 

Believe me I threw some grand pity parties when I was first dxd. I was angry and went through all the why me things. I felt like crap and there was no cure for what I had and to make things worse no one had a clue about what I had. My DH thought he had to fix me cause he had a hard time accepting it.

 

Set the rules and give yourself and your family time to adjust. There will be a lot of hurt feelings but you will cop the same attitude many of us have when it comes to what we will and won't do for our families. yeah

 

So it's not that some of us aren't as sensitive, it's that we have attitude now. tongue

 

luv and hugs

Marlee

Posted 8/21/2008 1:44 AM (GMT 0)
Sue,
I had a long talk yesterday with my best friend's mom. She kind of adopted me as her kid when I was young. She is very sweet and has loads of wisdom to share.

She asked me (she asks her children this too)

Is this the hill you want to die on? And I thought NO! I can pull myself up and make things better.

I too am in denial over my fibro. I have never in my whole life had any kind of illness and this fibro is just plain scaring me.

My advice to you is.. Take baby steps.. Just try to make one change every few days and stick to a simple plan of action. Be assertive!
I have 4 children. I called the help line and now I have a parent aid come in every week and she helps me discipline my kids. She's going to make my life easier by teaching me how to train my kids to listen! This is what I mean. Tell your family that you are going to take care of YOURSELF from now on and that they are going to have to help out. You can't take care of them if you are sick. Sit them right down and have a talk with them. Be kind but firm. And then write back to us and let us know how it went. We are here to help you. Their are some wonderful folks here that want to help. Good luck!
Carolyn
Posted 8/21/2008 4:57 AM (GMT 0)
aaw, Sue, I really feel for you! I think you hit the nail on the head when you said that your family is used to you doing things for them. When I was at home, dh hardly had to lift a finger around the house. He used to help out all the time, we shared all the chores. I thought it would go back to the way it was after I went back to work, but no. I had to sit him down and talk to him about how things were. The same thing happened again when I got off mat leave, and it's still not as it should be. They do get spoiled. I agree with the other posters, have a family meeting now, before you hit another flare, and divvy up some chores to dh and the kids. Everyone needs to help out! Good luck!
Posted 8/21/2008 6:52 AM (GMT 0)
smilewinkgrin  Wish I could reply to you all individually but it would be a strain on my typing skills.  Thanks to everyone, I have taken a bit of advice out of every reply and have decided first thing I can do is say that just before bed everyone has a quick look around the house and clears up anything of theirs, at least then I get up to a clean house.  As it is now I do it.  Hate getting up to messy house.

So much easier for rest of day.  Small steps in right direction

breathfsighs I really sympathise and empathise with you being alone.  I get so afraid, the slightest start of the pain sends me into panic mode and I dont function at all.  Spend most of my time afraid and lonely.        suez2  A hi to the others who feel the same.  sue2z

Posted 8/21/2008 12:38 PM (GMT 0)

blush  Sue2z,

You are just too precious. C'mere and lemme give you a soft ((((((((((hug)))))))))).  I live alone, but rarely do I feel truly lonely because I have my best friend since high school,(I am 54,I think) who lives a little over an hour away that I know I can always call if I need her and she will be here. Also, even tho my only child, a son lives 2 hours away, I also know he would fly here,lol, if I needed him. My biggest problem is I dont like asking for help,so I do understand exactly how you feel! It's not pride, (I dont think) that keeps me from calling on them more often, but I feel like I need to save those kind of calls ,sort of like saving green stamps (If anyone remembers those things,lol) for extreme emergencies.It just helps KNOWING they are there.

   When I first got sick with so many serious problems all within 3 years!, Graves disease,heart attacks (2), Fibro, chronic fatigue,severe sleep apnea,tumor on my kidney(non malignant,thank God),hypothyroidism...blah blah blah..oh yeah and my favorite so far, Right after finding the tumor on my kidney, I found lumps in my right breast and in the right armpit, which turned out to be , (get this) CAT SCRATCH FEVER!  smhair   lol now....The specialist I saw about that thought I had gone over the edge when he told me because I cracked up laughing and almost fell off the exam table.. He had no idea of everything else that had been going on.And I have always dealt with things with my weird, dry, caustic sense of humor!

Anyway, sorry for the long post, but still being a newbie , I need to open up (and goodness, it feels so good  already) and it helps me to put this down . It helps me cope I guess.

Sue, may  I ask what you are afraid of? it's ok if  you dont want to tell me, I was just wondering.

Just wanted you to know I understand and I so appreciate your concern over me while you are going thru such a hard time yourself.  Thank you Sue. Remember Sue...you do matter, and I am sure you matter to alot more people than you would ever realize.

Breath

Posted 8/21/2008 7:24 PM (GMT 0)
Breath, you just asked the question I was going to ask!   wink  

 

Sue, what are you afraid of?  It's the fear that starts the anxiety going and that makes you so miserable!  You have nothing to fear with fibro.  Yes, you have pain but you are learning to control it.  That's important. 

 

I suffered with anxiety years ago and was on a lot of Valium for it but, once I realized it was caused by fear, I got a handle on it.  I recognized the anxiety for what it was.  I wasn't dying, even though my heart was pounding in my throat and there was pain shooting up my head.  It was just my body's response to fear...a four letter word, no less!  I wasn't going to let fear run me.  So, when it would start to manifest itself, I would dismiss it and get focused on something that took my mind off how I felt.  Pretty soon, the anxiety attacks got fewer and fewer and now I hardly ever have them.  (This is why I have that scripture in my signature.)

 

The fear causes anxiety and the anxiety causes stress and the stress causes pain and the pain causes fear and the fear causes anxiety.....I know you get the picture.  You CAN take control of  your life.  I know it can be done.  You just have to decide that you will not be thrown back and forth by emotions. 

 

I can't remember how long you have had fibro but we are here to help you along with this and get control of you life again.  yeah   You have a family that loves you and will start helping you out, once you enlist them.  We are here to help you when you need advice or a shoulder to cry on.  But, as you get control, you will be stronger and stronger and life won't be as difficult as it is right now.  Start looking around at all of your blessing.  That brings a smile to my face!  I know I could be far worse off when it comes to illnesses.  I'm thankful, believe it or not, for the illnesses I do have because they haven't stopped me from living a full and enjoyable life.  

 

Don't make fibromyalgia the centerpiece of your life.  You have a lot of living to do and  you have a family to enjoy.  So keep a positive attitude and look to the future with hope.  Every new day brings hope and we all can handle one day.

 

Sherrine

Posted 8/21/2008 10:48 PM (GMT 0)
Hi Sue2z,

Let me tell you...you are not alone. I have had Fibro better than 10 years. Fibro had a hand in breaking up my engagement. My ex-FI could not understand my fibro. We dated, got engaged and moved in together - and I was on an upswing in my health. He knew about the fibro, full disclosure on my part, but I wasn't flaring then. Shortly after we moved in together my health took a nose dive. 2 weeks after we moved in I had shoulder surgery to repair a torn tendon and it sent me into a major flare. My poor ex-FI didn't know how to handle it. He didn't know what to do. And I was bad at asking for and accepting help. My being sick became the 3rd silent member of our relationship. And even though he knew I was sick, knew I couldn't do it all - - he didn't really help. I didn't ask for help with the housework, but he didn't offer. It was a relationship standoff. And in the end, we both lost - we post-poned the wedding date 3 times. I moved out last October. He couldn't handle me not being healthy. We argued a lot. The tension was high. This made me much worse. He felt responsible for my being sick and we never COMMUNICATED about it. It killed us. Hindsight is 20/20. And we both handled it so poorly. He tells me now he wishes he had been more supportive and helpful, but he said he really resented my not feeling well and the unpredictability of my illness. He never knew what he was going to get when he came through the front door. He says now that if we had just talked to each other and not acted like it wasn't happening and didn't ignore each other, we might have made it. So, the moral to my story is, ask for help if you need it. Communicate with your DH. I really wish I knew then what I know now so I could have handled things differently. It may have been the same outcome, but the journey may not have had to be so rough.
I hope this helps a little. I never thought my life would be a cautionary tale! tongue

Hugs Hugs hugs
Posted 8/22/2008 1:30 AM (GMT 0)
mad  I so understand how you must feel with your relationship ending.  Its so hard for a partner to understand and to know when to offer the help as I to am afraid to ask.  Every so often. I get the line "At least I stayed"  I always so that is unfair to say and that you cant hold that over a person.  The sad reality is he is all I have and I feel bad that that may be why he stays.

I am terrified that one day I will get up and the meds wont work and I will go back to what I was, I couldnt do it again.  It is a silly thought as I have pain guy on side but just before   I guess someone must be looking over my shoulder.  That is why im so afraid.  Knowing the forum is here helps though.

Before all I had was my husband.

Breathosighs, sooo nice your reply, even want to talk about anything give us a yell and I will hear you.    suez2

:-) And to everyone who answered you are all very special and thanks for advice. :-)

Sue, please read Rule # 1.  Thanks!

Sherrine

 

 

Post Edited By Moderator (Sherrine) : 8/22/2008 5:43:09 AM (GMT-6)

Posted 8/22/2008 1:32 AM (GMT 0)
Speppy I forgot to mention that im about to have mammogram also.  Everyone will know if anything comes of it.

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