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Does Everyone Just Push Through It?


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I am only 19, ill be 20 in july. I just feel like my life was taken away when i got POTS. So now i feel like i have to compensate by pushing myself to go out with friends no matter how sick I feel. Like last night i went to my friends house and felt horrible the whole time but just stuck it out till i felt like i was going to pass out. Then i always end up paying for it later. i know the obvious solution would be not to over do it but i just feel like im so young and i just have not accepted it yet. Then when i have my good days i am just so happy that i try to fit a whole weeks worth of missing out into one day. How do all of you guys do it? I want my life to be normal as possible but everyday i just feel like i keep loosing more and more normalcy. Its so frustrating when my friends can go out and pull all nighters or go to movies and dinners and i just cant. Did you just stop doing all of those things or just do it and pay for it later? thank you :blink:

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Hi Dani,

I am so sorry that life is becoming so difficult for you... I understand completely. I am sending you a big hug :blink:. I will be turning 27 years old on Thursday this week, and come May 2009, I will have suffered from dysautonomia for seven years. The first few years after I developed the condition, I had to decrease my activity level, but I was still able to function well enough to finish college, engage in gentle exercise, and spend time with my friends doing light activity such as going to the movies or playing games. I didn't feel well, but I could push through it. In the last three to four years my condition has become a lot worse, and I am unable to function to do even basic activities on most days no matter how hard I try. I had to drop out of graduate school in May 2007, and I can no longer drive or care for myself on a day-to-day basis. I am basically house-bound, with the exception of leaving for appointments or to ride along in the car on short errands with my family. I have to push myself more and more an can do less and less. It is scary because I don't know how I'll be a year from now, or when I am 30 for that matter!

Most of my interaction is with my immediate family, although I do talk with several friends on the phone on a regular basis. I am fortunate to have a couple of very understanding friends who come to visit me when they can, and they sit and talk with me or watch a movie or play a game, depending on whether or not I am up to any activity. I feel awful because I have had to cancel plans time and time again, have missed friends' weddings, and been unable to attend get togethers.

I wish that I could give you good advice, but unfortunately I can only offer empathy and tell you that the best thing to do is be honest with your friends and family. Push yourself, but not to the point that you are making yourself more sick. Hopefully they will be understanding and realize that you are trying the best you can.

Hang in there! We are all hanging with you... although it seems like we have all been hanging there by just the tip of our pinkies for a long time and there is no end in site! All we can do is be realistic with ourselves and others and do the best that we can. Even when "abnormal" becomes "normal", try the best you can to keep a positive mind set. Although it is not fair that many of us who should be in the "prime" of our lives can barely manage each day to get dressed, make our food, and do minimal tasks, I encourage you to modify everything you do to be broken down into little parts, like all4family's laundry posting. It might seem silly and frustrating, but it will help you feel like you can still accomplish something if you put your mind to it.

Hugs & Best Wishes, Broken_Shell :blink:

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Dani,

I'm so sorry that you have so much taken away at such a young age. Broken Shell already gave really great advice, and I can't add much. I came down with POTS when I was 32, and feel blessed to have lived to the fullest for the first 32 years. I still try to see my life as being lived to the fullest, just with different expectations. I rarely plan things because I usually don't feel like doing much anyway. Someone asked me yesterday "what are your plans tomorrow?" Such a simple question, but I couldn't answer at first. What do you say? I said "I think I'm going to go for a walk." Probably didn't sound like much, but it's a lofty goal for me!

Unfortunately, I lost most of my "friends" when I became ill. That was really okay, though, because the people who stuck around are real jewels. I know they're really there for me. And the plus side of POTS is that you have plenty of time to email and chat. :blink: I guess my one piece of advice would be to try not to live for your friends, but for yourself. Do what you can do, and be proud of yourself when you exceed your expectations. Otherwise, maybe a friend can come over and watch a movie at your house instead of going out? It's the friends who just want to be with you, in spite of your limitations, who are worth keeping anyway!

I wish I could give you a hug... Janie

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thanks guys :)

i dont know sometimes it can just be so frustrating when i want to do something but my body wont let me. I know all of you guys know what thats like..

Did most of you see improvement after a couple years of POTS or did it just get worse?

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Hi Dani,

Unfortunately I have gotten worse over the past seven years. However, I don't want to scare you because everyone has different experiences. Whatever happens though, try to stay positive. No matter what happens to your body, your outlook and attitude are things that you can still control.

~ Broken_Shell :)

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Hi Dani~

Almost every single day that I need or want to leave my house I have to push through it. Sometimes I'm successful, sometimes not. But I go through the motions, getting dressed, brushing my hair, putting my shoes on, and trying to get out the door. Some days my vision is off and I know it's not safe to drive. It's so irritating - I want to be like my old self and think nothing of running a couple of errands or heading to the gym. My early mornings are horrible, so I know better than to schedule any early appointments. After a cup of coffee and some food, I usually feel a little better.

Now, this doesn't mean it has to be the same for you, and I count myself lucky that I usually average getting out for an hour or so most days of the week. It's easier on the weekends, because my boyfriend drives me places. If I have a medical appointment that I can't miss, he takes time off to get me there. I'm very lucky that I have an extremely supportive boyfriend! (But sometimes wonder if I'm too much of a drag on him....Plus, I can't do evenings out at all).

Good luck with figuring out your high energy periods, and living your life to the fullest. I wish you all the best, my friend.

Peace,

potsgirl

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Hi Dani,

So sorry for what you are going through. Youth is a time your supposed to be having fun, and it just seems unfair that you can't! Everyone here has offered really good advice, and I don't really have much to add to that except that when I am down so bad that I can't leave my room I lay in bed, and make "plans" of things I want to do. I usually keep a notebook and pen right there, and for example I want to go camping really bad this summer, so I have been writing down all the things I will need to get together, and where I can get them cheaply...I will look at sale ads for what I want....etc.... It keeps me from getting to down, and keeps me thinking about good times to come! Also, I have improved since I first became sick. But I was on some medications that made me real sick!! But I am at least happy that even though I am pretty sick still at least I am not where I was, and that maybe that means I will get better!! I hope we all will!! Take care.

Hugs

Suzy

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everyday and all day long. i push and push and push.. i will not let dys control me and pace myself and worry about this or that. it's not life threatening for me. so i just keep going.

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