POTS ruined my weekend

[shannon]

I've had a really crappy weekend because of POTS. I keep trying to think of people to call and talk to about it, but there's nobody. My mom is who I talk to about this, and she is out of town. So I'm just going to let some things out on here.

Lately, when the weekend comes all I want to do is rest. I am just physically exhausted, and I look forward to the weekend so that I can let my body take a break. I know that I don't sound like the typical 20 year old, but that's probably because I'm not. I've learned that I shouldn't have to pretend that I'm healthy. But just when I try to validate myself, some friend comes along saying, "ohhh, you're FINE!!" They just don't get it. And it's like they don't even want to get it.

On Friday night I stayed home. On Saturday, some friends wanted me to go this all day concert. I honestly didn't feel well, but I went anyways. This part of me felt like they would think I was a wimp if I didn't go. Sometimes I feel like they think I just stay home for sympathy or something. So I went, and I felt like crap.

I hate going out when I don't feel well, because I know I'm not much fun. It makes me lightheaded to laugh. I can't concentrate that well on conversation. I just can't have fun, and there is all this pressure around me to be happy and fun. Then I wonder what they think about me, because I know that I don't "look" sick, so they don't really know why I'm not acting like my usual self. I hate it.

I threw up after supper and really felt horrible, so I asked a friend to take me home.

I don't want to feel sorry for myself. And most days I don't. I know that I've learned a lot and grown as a person through having this illness. But some days, it is really hard to think that way. Really hard. And today is one of those days. I just want to fit in with my friends. I know that sounds superficial. But I think it's natural. There are so many little things that make me different from them. And it feels like those little things pile up and pile up. I want my friends to believe that I am sick.

Ahhhhh, sorry for writing so much. I think I just needed to get that out. Thanks

[Poohbear]

Check this site out http://www.cafepress.com/idastuff/

I found some books, T-shirts etc that helped me through some of what you are going through. I also found the T-shirts a comforting yet gentle way to remind those around me that I am sick even though I may look "fine".

It is natural to want to do things that your friends are doing and it is very hard when you are so young to have your friends understand. I think the older we get the closer we can come to understanding (although still not close enough unless you have experienced a long term illness of some kind).

I'm not feeling well myself at the moment so I will keep this short but my wish for you is that you plan a "just for me" evening and try to do what you need to do and do some things that will re-energize you. Pamper yourself in whatever way(s) you can that will help you feel better and don't feel guilty about it!!!!!

[shannon]

Thanks, Poohbear

[morgan617]

I'm really sorry, but can certainly relate. I had a friend call me this morning to tell me she doesn't feel well. She probably needs to go to the ER as she is on some pretty toxic drugs, but does she call her daughter, no. She has an adult woman living with her and does she ask her? Nope, she thinks I'm the only one up to sitting in an ER with her for 4-5 hours, because she doesn't want to put them out.

Doing this will pass me out, but she just will not get this. I do not call her when I have family perfectly capable of taking me. So I have to tell her she needs to go and she needs to find someone to go with her. So she says in her passive way, well she guesses she will just go to bed and see what happens. So I have to say okay. This does not make me feel good, but the reality is, most people refuse to believe I am really sick, even my closest friends. They have watched me go from 160 to 100 pounds, have seen me faint, have seen my bp at major stroke levels, and still will not listen when I tell them I am too sick.

But I am putting my foot down. I am not giving up my health for people who refuse to acknowledge my illness. I do really understand your desire to want to fit in, because I wasn't healthy when I was young, but these are toxic friends.

My son is a couple years older than you and NONE of his friends ever pressure him about stuff. He is very ill, and it's invisible, but he has true friends, not toxic ones. I guess you need to do some weeding, and decide who your real friends are and aren't. When it all comes down to it, you have to take care of you, before you can take care of anyone else.

You have to decide if it's really worth how it makes you feel, both physically and emotionally. You may find yourself with less friends, but they will at least be good ones...quality, not quantity sweetie. morgan

[JaneEyre9]

Hey Shannon,

I know from experience what you are talking about. I am 24 and some of my friends came into town both last weekend and this weekend. I was too sick to hang out with them. It is very difficult to deal with missing out emotionally, but even harder if you push yourself to do something you know you can't do physically. It makes you mad at yourself and mad at your friends and you don't even enjoy what you tried to do.

I just want to say that it's not worth it to make yourself sick over trying to fit in. There are people out there who will take you as you are...maybe even come over to your place and watch a movie with you....take you on your terms. It doesn't replace the fact that you can't do "normal things," but it does help with feeling more included socially. Sometimes on a good day I'm able to put my feet up at a movie theater...that's a good social activity if you can handle it...plus it means you will only be "out" for about 2 hours. All-day activities like a concert, I know I could not handle. I give you a lot of points for trying ;-) Sorry you felt so sick. I'm surprised that your vomiting would not clue in some of your friends that things aren't quite right!!

Really, Morgan is right...when it comes to this illness, quality friends make all the difference. If you have one or two that can kind of get it and work around your obstacles, then you are fortunate. At this age it is very hard to find people that can relate. Most 20 year olds don't even get colds much less chronic illness.

What you are feeling is really hard to deal with. I hear you!

Kristen

[Wufflebear]

I too have been sick since I was little. It is very hard, I know. I have made myself very sick before trying to fit in and be normal. But I found it was easier to think of normal as "just a setting on a dryer." For a long time I hated thinking of myself as 'sick' becasue it implies I can not have a good day, or have fun, or anything but lay in bed and moan (or at least that is how I saw it.) So I eventually decided that 'i was normal even if my body sometimes was not.' Eventually you will find people who are willing to take you as you are...and in the mean time accept yourself...the rest will come.