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This Can't Be Happening


FarKry
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Just to say, I am 19 and male (Hi). I was diagnosed with POTS around age 13 and at the time it was okay with me. sure, i have less endurance and i get tired easily, no big deal. I was wrong. I used to play hockey very cometitivly and i had to give it up when i reached the age of 15. I was a very active person, i loved to move and stay moving, i had to give that up. these days my life is dull. while i do have friends i can spend very little time outside of school with them. i don't have the energy to go out and be able to get up the next day. infact if i don't get to bed by 11 i probably won't wake up the next morning until sometime after 11am. all i really have energy for nowadays is to sit, watch TV, read, eat and sleep. thats a typical day for me. Because of this disease i have to have a shortened scedule at school, and because of that i am still a Senior in high school. I'm supposed to go to college next year. how am i supposed to deal with college when i can barely handle what i have? our family is having trouble with money because i'm on 19 pills a day just to keep me going, and i can't even get a job to help because i won't have any energy for school or anything else. I have kept praying that this is just a nightmare and that i'll wake up. and the possibility that i may be like this the rest of my life is a taboo; i simply don't even want to think about it. I have given up my active lifestyle, but i used to be an active guy, and i still love being active. just sitting drives me crazy. you'd think i'd be over this by now, and as it turns out as i get older and more options open up to me, i can't do anything more because i don't have the energy to do anything else. Dr. Grubb has been a godsend, he has helped me understand my disease and what is possible and what is not (he also taught me how i'm now extremely vulnerable to high elevations, long story short, don't try to cross any continental divides). And as nice of a guy he really is, i wish i never had to meet him. I know we all do but this is getting to be to much for me. I grow more distant from my friends and ever closer to seclusion, i just want it to end!

EDIT: I'm starting to feel a bit better, i just really needed to get that out of my system.

Edited by Shivvr
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Get it out of your system as much as you need.!!!!!!!!!!!!!!!! Definately better than the alternative. There are people checking out the site often. Writing or journaling is really helpful. Miriam

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I agree with Miriam.

I want you to know that we've probably all felt like you are right now. A few years ago I was ready to quit my job, send my kids to my ex-husband, sell the house and move into moms or live under a bridge B)

Six years ago I was a part time student, full time employee and most import fulltime mom. Well I haven't been back to school. I still push myself to work, sometimes with every ounce of my being and I think I'm a pretty good mom.

Having a Chronic Illness changes your life. I know it's not what we imagined and it dashes some of our dreams. But it also teaches you something and opens your eyes to so many others that struggle with their problems. I have a new found realization of other people?s struggles, whether it is with Chronic Illness or just tragedies of life.

I?m glad that you?re seeing Dr. Grubb. He?s an incredible individual and the best doctor I?ve ever had the pleasure to meet, even if it wasn?t ideal circumstances.

Has he sent you to see Ken (can?t remember the last name) or the other counselor that he works with. It might be extremely helpful if you could see one of the counselors that he recommends or find your own but make sure they deal with Chronic Illness.

I know you feel like a burden on your family but they love you very much and it sounds like you guys have been in this for awhile so they?ve found a way to manage the finances. This is hard for me to say but I want you to know that I?m a single mom of 6 kids and my gosh it?s hard sometimes, the bills are staggering and my house payment is nearly impossible to meet anymore. I?m not even sure if I can get my kids anything for Christmas this year but we sat down and talked about it and they are alright, they?re just happy that we are all together. We are having a tough time right now but I know that it will pass, it always does. As a mother, I would rather scrape by or find other alternatives as long as my children are happy and as healthy as they could be and my kids haven?t always been healthy (but we?ll save that for another time.)

If you?ve known your friends this long, I?m sure they have an understanding by now of what you?re going through. Try to have your friends over more. Maybe play some board games, watch movies together or just hang out.

I know it?s tough but hang in there. You can always come to this forum too; there are many good people and advice here. 

Take care

Steph

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Hi Shivvr,

OMG! It sounds like you've been reading my diary! Since I was diagnosed, I've had to give up lots and lots of things, and know what it feels like to not have the energy to hang out with friends etc.

I tried to take up things that I can physically do. I used to lift weights everyday, but had a few too many faints at the gym and was banned - and am too scared to go it alone at home.

If you're interested in music, maybe try learning an instrument (that's what I did), although it doesn't replace sports etc, it gives you a sense of accomplishment, and something to keep you occupied, and most importantly for me, something to look forward to.

I try not to dwell on the fact that I have POTS (even though it effects every area of my life), and concentrate on the things that I can do, and strive to do them well.

I really do hope things pick up for you soon.

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Shivvr

My daughter Rachel has been ill since 13 ( and she is 18 today!!!). I am glad that you have been able to maintain some friends - must be a guy thing. Seems like most girls have friends that disappear. It is a nightmare at times. Rachel and I use to hike up mountains, she studied both violin and piano, was constantly moving. Now - just works on schoolwork through online classes. During the school year, she really does not even have time for TV. It completely *****. :wub: I am a single mom and the bills are tough.

Have you thought of applying for SSI? You are old enough that yourfamily's income is not a factor and it would give you a little money. We will start that process within the month. Are you taking classes at the HS or at home? Good luck - how you feel is normal for a bad situation.

Louise

i

Edited by cnm1
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I'm glad you feel better after you got to vent alittle. I just vented yesterday and it helps. Well I don't have much advise seeing I'm having ALOT of the same feelings as you are but I just wanted to say your not alone and we just have to hope the future will be brighter.....for all of us facing this life altering illness. Try not to isolate yourself, if anything family becomes your only real friends through all of this.

Hang in there

Dayna

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I feel so comfortable here. i only registered 3 days ago and i feel like i've been here for years. the welcome and personnal experiences helped me see that i'm not in this by myself, that thee are others out there.

briarrose- yeah, Ken Davis? I've been to see him. He's a great guy and a great doctor. seems to work as well with the mind as Grubb does with the body. and 6 children!? my parents have a hard time with 3 and they don't have POTS. You have earned my respect for sure, my hat is off to you.

cnm1- i take class at the HS. when i get home though i usually sit at the computer for a while to keep busy as my body rests a little. I still can't stand to do nothing, even when i'm tired (ironic isn't it?). whats SSI btw? our family income is stable, its just the fact that a lot of things have come up, a bunch have things have broken down and need replacing, so we're extremely tight.

d4g7- I keep myself busy. i usually find that sense of accomplishment through excersizing my brain instead of my body. I do have a guitar and play a little every now and then.

everyone else thanks again, i feel i can come here and not be judged. and thats extremely relieving

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shivvr -

i know it's late in responding & i'm glad that you're feeling a bit better after getting it all out....we all take our turns!....but i did at least want to chime in to say welcome. i'm sorry that you have reason to be here but am glad you found the forum. i just turned 26 & have had varying degrees of autonomic craziness for years now so can relate to some of your frustrations. it's definitely not easy.

hang in there,

:) melissa

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