Coping With Being Left Behind

[roxie]

How do you guys deal with feeling like everyone else is moving on with their life, having great things happen, and you're stuck at home sick and in a rut?

I try really hard to be happy with anything I can do and any improvement I see but its sooo hard being homebound and seeing people my age get to graduate from college, get married, move to awesome cities for jobs and I can't do anything.

I"ve had POTS since I was 12 and it has always been severe. I didn't get to go to school and have a normal life and the few friends I"ve had are all moving on when I'm stuck at home with my parents unsure if I'll ever be able to be independant.

Do you guys have these feelings? How do you deal with them?

[sue1234]

I do totally understand what you are feeling. I, on the other hand, am on the opposite spectrum of life from you--I am 50, have just-grown kids, and am pretty much homebound 95% of the time. I do miss all the things that people my age do, now that their kids are grown. My husband works alot and I spend alot of my day alone with the tv and computer. It is so isolating to be home all the time. I really don't have any friends anymore, as they just get busy with their own lives. The only new friends I have are online friends on forums like this.

I TRULY keep going contently everyday as I TRULY think my POTS will get figured out. I really do! I just don't think I have yet met the one doctor that is going to put two and two together. I think there is someone out there that is going to find some common factors in POTS patients and think, think, think on what some of the causes could be. From there, they can then backtrack and fix from there. For instance, I've been reading that people with celiac disease can have soooo many symptoms that their doctors might not think celiac. Alot of people with celiac quit gluten, and things go away that they thought was a disease of its own, like persistent anemia, lactose intolerance, and many more.

Which brings me to ask--do they know why you have small red blood cells and not enough of them?

[roxie]

I do totally understand what you are feeling. I, on the other hand, am on the opposite spectrum of life from you--I am 50, have just-grown kids, and am pretty much homebound 95% of the time. I do miss all the things that people my age do, now that their kids are grown. My husband works alot and I spend alot of my day alone with the tv and computer. It is so isolating to be home all the time. I really don't have any friends anymore, as they just get busy with their own lives. The only new friends I have are online friends on forums like this.

I TRULY keep going contently everyday as I TRULY think my POTS will get figured out. I really do! I just don't think I have yet met the one doctor that is going to put two and two together. I think there is someone out there that is going to find some common factors in POTS patients and think, think, think on what some of the causes could be. From there, they can then backtrack and fix from there. For instance, I've been reading that people with celiac disease can have soooo many symptoms that their doctors might not think celiac. Alot of people with celiac quit gluten, and things go away that they thought was a disease of its own, like persistent anemia, lactose intolerance, and many more.

Which brings me to ask--do they know why you have small red blood cells and not enough of them?

I don't know the exact reason, I believe it has to do with hypocolemic POTS. I had a red blood cell mass study about 9 yts ago and that's what it showed. Two years ago I had an upper gi scope dne with a biopsy of my stomach, wouldn't it have shown in that?

I'm sorry you have to go through the same things I do. It's very hard to see everyone moving on and any age. I am constantly fighting boredom bc I don't have the energy to do much and when I see other people being "normal" it just hurts. I don't know if there is any way to deal with it besides feeling the pain and the refocusing on the positive.

Anybody else have other ideas?

[lieze]

Just trying to find things that you can do that you feel happy about and that you kind of get lost in.

This happened to me the other night when I was helping the kids with a puzzle on the floor.

I totally got lost in that puzzle and it was very relaxing to me.

I don't get those feelings very often and thought wow I need to do more things that give me this feeling.

You could initiate emailing those friends and checking in with them since they will probably be busy.

Maybe there are things we can do and we just need to find them myself included.

[scarfgirl]

I don't think I've ever really learned to deal with it.

[sue1234]

If you had a biopsy done during the upper gi, make sure they got biopsies of the small intestine, not just the stomach. Celiac causes damage to the villi of the small intestine.

Small red blood cells does not sound normal--sounds like anemia to me. Also, with not enough RBC really sounds like it. IF I were you, I would go to a hematologist and ask about it. Because of the severity of your symptoms, it wouldn't hurt to have it re-addressed. If it is a kind of anemia, it is fixable. That might help some of your symptoms.

[roxie]

Sue, I will look into it and ask some questions. It never hurts to check eventhough I've been checked and checked for things. I've had POTS for 12 1/2 yes every couple years I get a good workup of things so nothing sneaks through

[firewatcher]

I take it one day at a time. Some days I can deal with it, and other days I'm frustrated beyond belief. It is a constant circle of acceptance, frustration, denial and self-pity. If you can find anything productive to do, that you enjoy within your limited capacity, you will be happier. It isn't easy, but that's why most of us are here on the forum!

[roxie]

Thanks, today's a better day than last night. I do have a few things I like to do. I just can't do them as much as I'd like... Maybe one day though!

[hensor]

Is there anything you can do to achieve something for yourself? develope in your own ways? creative writing, art-y stuff, something internet based, crafts, design?

Since getting badly affected by PoTS I started drawing cartoons, which I then showed to a few people and now I have done 2 cartoon books (one on HMS/EDS and one on PoTS) which I sell to raise awareness and funds for relevant charities. (sold more than 200 in just over 1 year) So other 28 yr olds might have kids or careers, and their own homes (I live with older sister), but I have written 2 books!

Your life might run differently, but it is no less valuable. Your path might be unusual, but it is equally precious - perhaps more so because the challenges you face will give you depth of character and perspective that few ever achieve.

Hope you find something that you enjoy

[ladyt]

hi..

I see u allready have gotten many good advices. All people have their own challenges, but for people most feeling left on the side line i think is very hard. When peole say they like to be diffrent is mostly in the meaning a bitt better or somthing like that. Being ill is not somthing one whant to be.

but once one have an illnes, well u have to deal whit it. I used to be very very in to denail and positiv thinking. Mind over matter. If I kept thinking i was healthy my bodie would cathc up. i found out they work togetter , positive thinking is improtan but it is ust that. For me when i realised that the positive thinking was not going to make me heatly and all the other stuff i also tryed. I whent trhou some grieving.

Now i am still in to positive thinking, and some short time grieving and getting anger etc out. Whit an unheatly bodie I need to keep my mind as healty as posible.

And i have realised that many things i will not necesary work all the way trhou, it will continue. Somethimes i will feel badly about it other times its sort of okey. Like not working, being so depentent on others, losing friends, lonliness and all the pots stuff of it self. Dealing whit painetc etc.

Feeling left behaind is a bigg part of that. when i planed this response in my head it was much more fluient. Bitt foggy to day. But I gess all i really whant to say is u are not alone. Here online we are many on the sideline. So many that we are not standing alone. Even that it might feel so in everyday living.

So internett is one thing to be so ever gratefull for. Its a life saver bigg time. And i am greatfull for tv, and my large dvd collection. And like others have mentioned finding somthings u can do , how ever small, is great. I have difrent leavels of crafting. I was never any god at stuff like that, but i have had years to learn. i do some small knitting, scarfs and hats only. I do some embroiding, very slow and not much a year but still.

i have a plan to learn quilting, and bought a sewingmaskin. But troble whit does are u have to sit whit legs down. i dont have much time to that. And i have other crafting stuff laying around. So days i feel better i have lots of things to do. Problem is there is all this other stuff to do in that limited time.

sorry this was probably not the most coherent reply but still..

[poppetkazutaka]

Well, that happened to me even before POTS!

But I understand how it feels. Sometimes you wonder if you're ever going to be well enough to be independant. You see people around you well and complaining about things like their cellphone or computer and you want to thwap them because, 'you think you have problems?' XD

I don't think there's any one way to cope with being left behind. Just trying to keep up works for some. Staying back with the other slow runners works for others. Resting on a bench until your able to zoom ahead of everyone just to scream, "HA! I kicked all your butts!" is sometimes what a few do.

It also depends on how much energy you have, how much you're willing to expend, and how much you're willing to let what has you, get you down. How much are your friends taking from you, and how much are the people around you, your friends? Sometimes they're just people you grew up with, and they're not the kind of people who would really be there for you if you really needed them. They're aquaintances, not friends. This part of your life you need to find the ones who are going to want to go through the messy stuff. The painful stuff. The ugly stuff.

They're the ones who are not going to worry about being at the end with you, holding your sweaty hand. They don't care about keeping up. Or winning, for that matter. They just want to be with you no matter what. So it really depends on both ends of the spectrum. Not so much on your ability to keep up, but their ability as well to slow down and wait for you.

[hugs] Good luck to you either way! :3