Anyone feel left out??

[Jacquie802]

Hi, so I guess I am having a bad night. I feel left out all the time by my friends. My aunts always do things with my sister, I'm lucky if they ever call me.... How do you guys deal with it? I'm 21 and I sit in my house half the time. If I have a good day I can go to 1 store for a half hour and that is my day. I know that is alot more than some people here can do, and I feel bad for complaining, I really do. This is just the only place I can go where someone understands.

Today at my doc apptmt, my cardio said that this whole POTS thing comes in waves. So for a while I could feel okay, then get worse, then be okay again. Why doesn't it just get better like the flu or something like that?! So, my whole life I am going to be watching reruns, eating, and feeling even more left out. I am never going to feel normal again..? While all my friends are working or going to school, I lay down or sit and do nothing. I just feel like I am soo far behind where I should be....if that makes any sense...Sorry if I put a damper on anyone's mood. That is the last thing I mean to do. I'm just aggravated, sad, and upset.... Thanks for listening/reading.

Time for a bowl of ice cream!

[dawn]

Jacquie,

Yes, I know how you feel. I was always very social. Now my contact with friends is usually by phone and sometimes I'm in my PJ's for days.

Occasionally I will go out with a group of my friends for supper, really occasionally, and when I do I just don't feel connected anymore. They all have so much going on in their lives and they are so full of energy. I sit there and can't eat much or I'll get sick and wish I was home again.

You are still young, hopefully you will have a remission. I had a break from POTS for about 7 years once.

Stay positive and make sure you do lower body strengthening exercises if you are able. It helped me alot when I was younger.

Dawn

[Jacquie802]

Dawn,

Thank you for the reply. When you were in the remission for 7 years did your symptoms completely go away or were they milder? I can't even imagine feeling fine for that long. It stinks that it came back, though. There's soo much that I want to do. I want to go to school and be able to make it through classes and not worry about getting sick while I am there; I want to have a job and make money to get my own house and have a family....there is just soo much out there that I want to do. I know I could be alot worse off and that's why I hate feeling sorry for myself.... My time is up now, I only give myself a half hour to feel upset about this. In some weird way after the half hour is up, I tend to be better (emotionally, of course!). Go figure! Thanks again!

Jacquie

[Lukkychrm42]

I definitely know what you mean. The few friends I have who are still in my hometown are seniors in college and really super busy (like I should be!). The rest call, check my websites, but often they're afraid to make the first move, especially if they know I'm not doing well, because they don't want to get in the way of treatment or sleeping or things like that. When really, the opposite would be better! When the sick person calls it feels like you're being a burden or you want something even if it's just company or someone to actually ask "How are you doing?" and mean it! Whereas when the healthy friend calls it's thoughtful and can really make a bad day so much better!

Also, being in our early 20s means that a lot of our friends are out drinking and partying a lot, and they know we can't so they don't bother asking.

My host mom here in Italy told me last night that one part of my brain told the healthy part of my brain that I'm sick, and that even if I feel bad, I'm actually OK. I got confused and thought she was trying to tell me that it was all in my head and I'm really in good health. But I misunderstood, and she was really trying to compliment my intelligence, saying that even though I'm sick, I'll still 'succeed' because I have too much going for me.... which was COMPLETELY from the point of view from a healthy person who doesn't really understand the idea of being fx completely bedbound (which I'm not, thankfully), and the idea of success being linked only to determination, but she just wants me to be optimistic about the future.

So clearly people in general don't know what to say, nor what they mean by it, and especially not how you'll take it. Anyway, try talking to your friends and tell them that since you can't go out with them, it would mean a lot to you if they would stop by once in a while or have a movie night at your place or something. Chances are they're not doing it to hurt you. maybe they're feeling hurt, too, because they don't know what to do, so help them understand.

And for now, enjoy the ice cream!

[Poohbear]

I can relate to what all of you are saying.

I do agree that sharing how you feel with your Aunts and other relatives and friends may help.

The other thing I've done a couple of times is invited people over for a "low key" evening. I either plan ahead and cook something really easy that can be made a couple of days ahead of time (like a pot of chili or spaghetti sauce...both of these can be done in a crockpot as well) and then have them over for dinner and a movie. You can buy paper cups and bowls to make clean up easier.

You could order pizza instead if you aren't able to cook.

Sometimes I've even told my friends that I don't have the money to feed all of them but want to see them so how about everyone coming to my house and chipping in $3-4 a piece for pizza and we'll watch a movie or play a game or something like that.

I still find that sometimes when I do this I'm completely wiped out the next day but it's worth it to me to see my friends and have some sense of normalcy and connection with them.

[Jacquie802]

Hi Guys,

I would try and talk to my aunt's about it, but since they think nothing is wrong with me I don't think I am going to get too far with that... Thanks for all the ideas you gave though. It's tough figuring out a day because most of my friends are away at school and they will only meet up on Thursday nights to go to Boston, so who knows?! Thanks again f or all the advice!

Jacquie

[DSM3KIDZ]

I'm so sorry your feeling so lonely today. Well your not alone in that. I'm a 28yr mother of 3 young ones and never have imagined this for my life. For the last 26yrs I was completely and actively involved in friends, family and the community. Than BAM!!!! out of nowhere my life took a stand still. It ***** it really does.

I'm in a church group and I'm by far the youngest with the most children and I sit there and wonder "why?" I feel like the older ones should be having issues (not that I want them to) and yet they are extremely healthy and active and sometimes it really tuggs at my heart.

But than I realize it is beyond my control and it's time to just accept this for now and hope for a healthier future.

Alot of my friends dissappeared when I got sick and I was actually thankful for that as weird as it sounds. Because through that I learned who my true friends are. Now the ones who stayed connected to me are truley the ones who care and are the ones who are going to see me through this. I no longer have to waste my energy keeping up with the ones who couldn't look beyond themselves for one minute to pick up the phone to see how I was.

I would express to your aunts or friend that you are hurt and need them and if they don't respond....make new friends. Ones that accept you for your strenghts and also your weaknesses.

I hope you have a better day.........and keep hoping for a better tomorrow. Even if you can't hope today keep it tucked in your heart for tommorrow.

Dayna

[Babettegall]

I sure do understand your frustration! I too am going through the same thing. Unfortunately, I can't offer any profound words of wisdom to help you through this, as I'm seeking the same! Ice cream sure sounds good....... I think I'll join you in a scoop or two!

Chin up!

[Ernie]

Hi,

I lost all my friends except one when I became disabled. I am now rebuilding a new group of friends. They are all disabled themselves so we can relate to each other in some ways. We try to do things that all of us can do together, ie go to the movies or have supper.

[JaneEyre9]

I often feel the same way. It's very hard to know "the spirit's willing, but the flesh is weak." I had to tell that to my boss, who asked me if i wanted to continue in my academic program. I have such a strong desire to be active and doing "normal things," but my body can't do what is required right now.

As far as friends go, I invite a few for quiet activities at home when i'm up to it. There are only a few sepcial people who can come over and lie next to me and watch a movie, but i hang on tight to those few. They are precious because they take me as i am. That's an important part of having POTS, realizing who your true friends are, and realizing that your worth and value aren't based in what you "do." These are hard concepts that I fight daily to come to grips with emotionally. Just want you to know you're not alone.

Kristen

[AJVDK]

I feel left out alot. I think that unfortunly most of my friends and family have gone on with there lives as the should, but I feel as though I am standing still, so now when I go out, there is always inside jokes I don't understand and so on. I get down about it some times but I only hope someday I will be feeling good enohg to keep up with them.

[Mrs. Glass]

I know exactly what you are talking about. It doesnt seem fair. Our lives are so different now that it is unreal. I am lucky if I get anything done during the day. I never liked tv before, but now thats all I have. My husband is always working and I cant do anything anyway. I havent even been out to dinner in over a year, because I dont know when the dizzy spell will hit me and send us home. So we dont go out anymore. I wish that I knew the answer for everyone, but I dont. All I can say is to hang in there. Try to find some kind of a craft that you can do. I am still looking. I havent found anything as of yet. My hands dont work so well anymore.

Do you like to read? If you do try reading some good books. I know its not much but thats all I can think of right now. I dream of being outside so much, but it is just too much for me. Hang in there. Vanessa