My Family Is Mad

[lorrie]

Every year the women in my family (two sisters, sister-in-law, mother, 5 nieces, my daughter and me) go on a "back to school" shopping trip. This year, I am not stable enough to handle a one hour shopping trip, let alone an all day one.

One of my sisters is so mad at me and said "you are just trying to get attention". It really hurt my feelings...she hasn't even attempted to understand what I go through. I certainly do NOT want this type of attention. My daughter needs things for school too, but I plain and simply can not hold up to going.

My husband and I will have to shop locally on several short trips and when I can go at my pace. Of all the things I have had to adjust to, the distant feeling from my family is by far the worst. We have always been close and done things together. I miss it and I feel betrayed that they get angry at me instead of trying to help.

Just having a little "pity party"...forgive me.

[Ernie]

Hi,

I am sorry that you have a family that is not understanding.

Could you ask your sister who is mad at you to push your wheelchair if she wants you to go with them?

There are many stores who have wheelchair at the front desk and some even have scooters. That could help you shop with your family. Just a idea!

[firewatcher]

Pass the punch and cookies, I'll come to your party! How can you possibly be getting attention if you can't be there? You know your body, so don't push too hard. Chin up, it will be OK.

Jennifer

[momofsara]

Sorry for the pain you are feeling because of your sister's mean words. People can be so cruel, and it hurts even worse when its family. You are supposed to be able to count on family when you cant count on anyone else. But you MUST take care of yourself and not push too hard. We all know what kind of problems that can cause. Most everyone here has experienced the bad effects of over-exertion. Just know that everyone here cares about you and feels your hurt. Take care of yourself ...(((((((gentle))HUGS))))))) Susan

[Maxine]

Sorry about your sis--------how mean-------

I hope you don't let her get you down. Do you have some of your doctors clinical notes that might explain the seriousness of your health problems, so she might get it? It's sad that you have to proove your not "trying to get attention".

I'm sure we can think of much better ways of getting attention then feeling like this.

A couple of people in my family not only think this is all in my head, but the doctors who diagnosed me with my physical problems must have wild imaginations too, and they MUST be nuts----------because I am.............

I go to the ends of the earth to try to find doctors who will find something wrong with me, so I can "get attention".

No one has ever said this to my face from my family, but I have found out from another dear family member who was kind enough to share this reality with me. I asked her is this is how a couple of them thought about me, and all she said is that she can't deny it, and to not worry about them because other people in my family believe me. However, even some of them don't understand the limitations this can cause. I always found it funny when I showed them proof from my doctor's notes, and they still looked at me like I was nuts, and challanged the credentials of the doctor I went to see. Even docs from NIH----------

It does make me mad still, but I get over it. Sometimes you can't win no matter what you do or say--------------some people are just cruel.

BIG HUG

Maxine :0)

[MomtoGiuliana]

Goodness. Have they seen your list of diagnoses? I think it is easier for some people to be in denial than to face what loved ones are going through. So sorry you aren?t understood. I hope that with some time, they will understand.

[lorrie]

Thanks guys...you all make me feel better. I called my sister and did actually ask about her willingness to push a wheelchair if she wanted me to go so badly. She didn't think I was funny, but I felt better...lol

I have thought about this for some time now and I know I can't change them, so I'm trying to change how I react to them. So I miss out of some stuff...I also miss out on landing on the floor of a public restroom or in the middle of a shopping mall. Yeah, I'll take my couch over that!!!

For those of you who want to join the party...come on over!!!!!!!

[ajw4790]

Oh, my! I wish they were more understanding of you! But, like we all know some people just have a hard time understanding much until they are in the same shoes or have that epiphany moment. Good for you for standing up to them and asking about the wheelchair. So, she wasn't willing? That is awful!

I wish you were able to go or that they were willing to break the shopping up into smaller parts etc. over a weekend or something so that you could at least go part of the time. Some people just do not understand what all of this means. But, it is not worth feeling miserable on the dirty bathroom floor just because others did not understand.

I wish there was an easier way to help families understand all of this. Know that we understand the frustration and difficulties with doing such a trip.

I hope that they start to understand and that maybe some kind of compromise or mini-trip can be arranged so that you all can go shopping together, but not as a whole day- shop til ya drop kind of thing.

[MightyMouse]

So, what did your sister actually say when you asked her to push your wheelchair???!

My sisters used to stop looking at me and stop talking when I mentioned anything relating to my health--my one sister even used to roll her eyes in disgust. It still hurts when they do it, but you're right, you can't change your sisters, nor can I change mine. They've never been around when I've actually fainted and I think, to some degree, they and my father believe I'm making it all up. My mother began to believe me when I spent a week at NIH for research. Now she actually acknowledges that it's so difficult for me, and it's painful for her to see me less healthy than she is.

Only time changes things. I actually got a Buddhist quote from this morning that said something like "first you change yourself, you check yourself and then you watch those around you change." With all of my family, I stopped letting their feelings about my health get in the way of me taking care of my health--and some of them have since changed the way they treat me for the better (like my mom).

Nina

[hollie]

I am sorry to hear she is not being suportive! I think we have all had that to some degree in this mess. If you haven't, you're one of the lucky ones!

I also have had issues with my sister recently. She told me "If you would just get it out of your head, you would be fine!" WHAT? My response was " If you lived like this for one week, you would know what it's really like and it's not just in my head!" Her words are only words, but they still hurt. I was mad for about a week at her, but decided that was only hurting me, not her and I let it go. Hopefully (soon) she will see how much it really effects my life.

Hollie

[Ernie]

Hi Lolo,

I am sorry your sister is being selfish and self centered. You have a great attitude!

[pat57]

I've been down this road too many times.

I too make uneducated conclusions about pretty much everything I see an hear. And so it is easy to forgive.

BUT, I do not have the time of day for anyone who- after being told that I am struggling and hurt when people think I'm lying about what limits I have.- still

think I'm lying. To clarify when I say I can't- it means I can't. I've been through this with my 3 siblings. One of which said I was selfish and causing trouble.

I told him don't write me, don't call me and don't come to my home. I did see him at a family thing. I have to say ,I feel I did the right thing, I do not want him in my life. He has no respect for me. At the same time I have no problem seeing him he doesn't bother me. And we did talk. But I sure as heck will not confide in or depend on him for anything, nor will I drain myself maintaining a relationship.

That's the worst thing about this condition I don't have the energy to maintain friendships with dear people and it makes me very sad. I HAVE to pick whom I will spend time with.

[lorrie]

Nina,

When I mentioned the wheel chair, she said "well, I can't push you. You can walk as good as anyone else and I need my hands free to shop." She then asked why I persist in trying to make people feel sorry for me.

I'm done trying to make them understand. It takes too much energy and I need to reserve that for my daughter. I'm okay with missing the shopping trip now. My husband is taking me and my daughter for an hour or so tomorrow and an hour or so on Sunday afternoon if I'm up to it. We will get her school clothes and supplies and that is all that matters. I wouldn't have any fun with people who used to be there for me and are now acting like I am a burden.

They are the ones missing out because distancing themselves from me also means losing time with my fantastic daughter...they will either come around or they won't...I have my husband, my daughter, and now you guys. I'm happy with that.

[Guest tearose]

OMG! What a selfish, smallminded, hurtful, brat! It was excellent of you to put the question to her and you sure know how she feels!

As if you get any good attention from being confined to a wheel chair!

She hasn't a clue and obviously doesn't understand or want to understand that you are struggling.

I hope you can find some peace in knowing that you can make friends with "better people" who will become as close as family and will be supportive, loving and will accept you and your challenges.

You are right, it is their loss for not helping you to be part of the trip and they will loose out on having you and your family in their lives!

best regards,

tearose

[MightyMouse]

Lolo, that really stinks! I'm sorry to say this, but she sounds so selfish... I appears that she is unable to "walk in your shoes" (more like crawl in your shoes, yes?) for a moment and right now can only see "her way" and to her, her way is the only right one. There's no fixing that--

I encourage you to just be yourself--say what you need to, even if it's to say to her "that's so hurtful and insensitive that I don't know what else to say to you." Holding onto that stuff takes up too much of your precious energy, limited as it may be. Do whatever makes you feel your most healthy--if that's saying nothing and simply forgiving her ignorance, that's cool too.

Not sure if this helps, but at one time or another, most everyone on this board has been through something similar.

Nina

[Tammy]

I avoid people like this and have developed a "screw them" attitude. It still hurts but I figure why would I want to spend time with anyone who doesn't understand or try to be supportive... I just don't have the energy for them anyway

[bjt22]

I avoid people like this and have developed a "screw them" attitude. It still hurts but I figure why would I want to spend time with anyone who doesn't understand or try to be supportive... I just don't have the energy for them anyway

That's where I'm at. There's just a lot of people I've found I'm much happier not being around. Why spend time with those you really don't care for? And if anyone asks, these days I'm putting it down to "getting old and set in my ways".

The real kicker is that those who were the first to exit out of my life were the ones who had always expected me to listen to their problems on a regular basis. Over and over. I suppose they just didn't have any room in their lives for anyone who just might need a little something from them now and again. Obviously, they were much more interested in taking than in giving. Good riddance.