JaneEyre9 Posted November 4, 2005 Report Share Posted November 4, 2005 I know some of you have had a sudden/unexplained onset of POTS like I did, and somedays I look back on how busy and active I was...constantly on the go, driving everywhere, working hard to meet needs, not sleeping... I start to wonder: If I had slowed down and not pushed myself so much, would this crash still have happened to me? Is this my fault? I know it may seem silly to think like that, but I just wondered if anyone else here feels/has felt the same way...Thanks for the input and support,Kristen Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted November 4, 2005 Report Share Posted November 4, 2005 hi kristen...good question....I sometimes wonder had I not worked 70-80 hours aweek.. and had not been going to college full time..( i was working all them hours to pay for college!!).. and had not just totally shot down my system..if I would be feeling differently today...then I think well.. I have had some degree of pots since well forever... and I just think that that is the way that I was born.. with a wacky ANS system....I think that when you are dealing w/ pots and stuff that the weirdest things can casue a crash or flare.. and that though we can try to manage our pots the best that we can.. and do all that we know how to do to treat it and manage it.. considering that not a whole lot is know about dysautonomia... we need to try and live our lives as much as we can... but also be aware of our limitation.. which I know can be hard and is at times areal learning experience... and we can be feeling good one minute.. and think Oh i'll be allright to do this.. and find that maybe an hour later.. Hmm...try not to be hard on yourself.. trust your intuition so to speak.. if your gut is saying HEY!! but your head is saying "GO AHEAD!"listen to your gut... its usually right..but yes i have felt the way you have and are feeling...hang in there! Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted November 4, 2005 Report Share Posted November 4, 2005 yeah- I actually do blame myself. I've had symptoms of ANS dysfunction for as long as I can remember, so I think that I was predisposed to POTS.. but then I started having issues with food and my weight.. and so on and so forth, and I developed an eating disorder. I still have issues, but I've been OK with it for a few years now, and my POTS has gotten worse in the last year. It's kind of ironic, because when I was 17 I lost about 40 pounds, going from being actually overweight to a healthy 120 lbs on my very muscular frame.. now, I haven't been able to exercise regularly and have gained most of it back just in the past year and few months. I hate my body, but I'm healthy enough to know that I can't do anything dumb, so I feel stuck in limbo and am just waiting until I feel well enough to go for long walks or start even going to the gym again. Anyway, that's my story and why I feel completely responsible. You can hate me now, but I didn't do it on purpose.At any rate, last spring when I was definitely getting worse, I blame that on the fact that I was taking 6 classes and working full-time. That's why I got worse over the summer. Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted November 4, 2005 Report Share Posted November 4, 2005 I fight the feeling all of the time. I had not been sick or been to the Dr for illnesses in over 20 years. I often wonder if my go go go attitude and not having regular checkups brought this on. My Dr keeps asking me if anyone in my family ever had nerological problems, and I keep telling him the same thing. NO! no one in my family as far back as I can remember ever had problems like this. So I often wonder if I did something to bring this about. But I guess I will never know. I just keep trying to put one foot in front of the other. VanessaI know some of you have had a sudden/unexplained onset of POTS like I did, and somedays I look back on how busy and active I was...constantly on the go, driving everywhere, working hard to meet needs, not sleeping... I start to wonder: If I had slowed down and not pushed myself so much, would this crash still have happened to me? Is this my fault? I know it may seem silly to think like that, but I just wondered if anyone else here feels/has felt the same way...Thanks for the input and support,Kristen<{POST_SNAPBACK}> Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted November 4, 2005 Report Share Posted November 4, 2005 I try not to because you cannot change the past. I just try and look toward the future. Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted November 4, 2005 Report Share Posted November 4, 2005 You know, at times of course I do wonder all kinds of things. Like, did I stand too close to the microwave too much, did I walk between someone changing the tv with the remote and the tv too much, did I use a tanning bed too much and fry my insides? You know, what did I do? Then , I look externally- are my parents really siblings? Are all doctors just ego-tistical quacks? Then, I calm down and realize that this would have happened regardless of any of the above. This is the way I was made and how I deal with it will be whether or not I win or the disease wins in the end. So, acceptance is something that we all struggle with at some point. Even if I do learn why this happened it would not change anything. So, I just try to do the best I can and not stand so close to my microwave just in case! PS My parents are not siblings (as far as I know!) and I LOVE my doctor!Carmen Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 4, 2005 Report Share Posted November 4, 2005 Hi,I am angry at doctors and myself because it took 30 years to finally get a diagnoses and by that time I was completely bedridden.I try to focus on getting some health back and staying within my limits. Quote Link to comment Share on other sites More sharing options...
yogini Posted November 4, 2005 Report Share Posted November 4, 2005 Great topic. I don't necessarily blame myself, but I'm certain that my busy and stressful lifestyle was a big factor in getting POTS. Stress by itself doesn't cause POTS, but it definitely adds to things. I don't blame myself because I believe in fate and think that everything happens for a reason. POTS made me wake up and smell the coffee. I have learned lots of important lessons because of this illness, including to slow down, appreciate life and take care of myself. Health and happiness are so much more important than many of the things people measure themselves by: money, success, etc. POTS is bad enough, but if I would have kept going, I might have had even more serious health issues in the future. And it has made me realize even moreso how much my family cares about me. So, in a strange way, I think my life in the long run will actually better because of POTS. Quote Link to comment Share on other sites More sharing options...
mom4cem Posted November 4, 2005 Report Share Posted November 4, 2005 I have to agree with so much already posted. Sometimes I feel yes, I brought it on by trying to be supermom, superfriend, superwife etc. Run here, run there, yes everyone,,never saying no then BAM!.. But, I still do a lot of things, I have to and for me it's good it forces me to move and to go. I still overdo it at times and pay the price. I do think that by having some form of dysautonomia(I don't really know which yet) that it does help me to focus more on taking care of myself, saying no when I can't do something and not feeling bad for doing so. It has helped me to appreciate things, people etc..more. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted November 4, 2005 Report Share Posted November 4, 2005 I blame myself too sometimes. In reality though, I don't know what brought on my POTS. I always (now that I look back) had symptoms, but this year, sheep hit the fan. I never worked too hard though, I'm a full-time student, but don't have a job, I was poor but relatively stress free. That's what honestly boggles my mind the most...one moment I was fine; the next, I could barely walk. It's like some invisible train ran me over and no one saw it happen. It would be one thing for me to have contracted a disease, but the Dysautonomia has been so sudden and stealthy, it makes it doubly hard to deal with. Ok, sounding gloomy... Sorry to be such a downer. Great post though, it's nice to see I'm not alone in the blame game Quote Link to comment Share on other sites More sharing options...
futurehope Posted November 4, 2005 Report Share Posted November 4, 2005 Kristen,I don't try to figure out what happened and why. I think I'll never know for sure.As to being very busy and overextending myself, I know for a fact that there are MANY people out there who overextend every day of their lives AND THEY'RE NOT SICK. So, I do not subscribe to the fact that it's being overly active that made me sick. I think it's a defect in my makeup that caused my medical problems.Again, even if I had been exposed to a virus or something that triggered the onset, OTHER people have been exposed to the same and have have not gotten sick.I feel comfortable in saying all this because I am in the middle of reading a biography of the actress Lauren Bacall. Now, if anyone should be sick, or even dead by now, it's her. She's had a VERY active life a good part of which included cigarette smoking. I'm exhausted just reading about how active HER life is and has been. Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted November 6, 2005 Author Report Share Posted November 6, 2005 Thank you all so much for encouraging me and helping me to feel not-so-alone. There are so many complex emotional issues that go along with having POTS, and I am slowly sorting through them. I will definitely come back to this thread often and reread your comments. It's true that other people overextend themselves constantly and have no significant health effects. It's also true that POTS helps you to appreciate the simple things in life a lot more. And i have definitely had to squeeze the word "no" out of my mouth a whole lot more. That's a hard word to say for those of us to who like to be everything to everyone...and POTS gives me a lot of opportunities to practice...."nnn....nnn...no" None of us could have prevented this or seen it coming. I like what dizzy dame said...it felt like was i was hit with an invisible truck too. Thanks for the reassurance and empathy. You guys are the best!Kristen Quote Link to comment Share on other sites More sharing options...
Evie Posted November 6, 2005 Report Share Posted November 6, 2005 You are right that emotions are so complicated, I sometimes blame myself for pushing too hard then other times I sometimes blame myself for not pushing harder. I always wonder if i thought more positively maybe i would 'heal' myself, or if i forced myself to get out of bed and walk despite any pain/weakness i may fix myself.... it just seems so hard at the time and i know im about to faint ... Sometimes you have to forgive yourself for pushing hard and other times allow yourself to rest. Try to not let those pesky emotions confuse matters ....You are in no way alone Its sad that guilt is so tied up with chronic illness ... Im not sure why but society tends to push it on us as from so many differnet angles. Quote Link to comment Share on other sites More sharing options...
persephone Posted November 6, 2005 Report Share Posted November 6, 2005 Frequently. I know that mine was exacerbated by the flu last year, but I've been like this in some form since I was 12, and I've always wondered if I did something wrong as I was growing up- or was it the stretching I used to do as a competitive gymnast when I was a little girl? I even wonder if it was the dieting I did during my teenage years as I was down to about 94 lbs (I'm currently 140lbs, but don't tell anyone! I swear each boob weighs 1 stone and a half! )I pushed myself really hard at St Andrews, too- ran the Literary Society, worked for Student support helping students in distress, and ironically enough, disabled students! (ha ha! now I *am* one!) , helped organise the biggest poetry festival in Scotland, used to swim regularly, use the gym, dance and ceilidh like a mad woman...And all of a sudden, I can't do any of it now. It's taking me all my time just to get to my classes. I love English and especially medieval english, my tutors are great but my life is the mirror opposite of what it used to be.At St Andrews, the more I did, the more I achieved because I thrived from having lots of different things to do, from socialising and contacting people--I love people and am really a very outgoing person who is always the life and soul. But now I've been forced to live like a recluse because it takes me so long to do my work--so where does that leave me?! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 7, 2005 Report Share Posted November 7, 2005 Sometimes I feel like a failure now, but as far as my life, I did what I had to do for my family and myself. No regrets about that...morgan Quote Link to comment Share on other sites More sharing options...
hopeful-girl Posted November 8, 2005 Report Share Posted November 8, 2005 I was perfectly fine until I over dosed on cocaine in 1986. Yes I was the bad party girl. But my life was NOT so pretty growing up. I never touched drugs after that. How ever it was after that I started having POTS episodes and they also told me I had a heart mur mur which I never had grwoing up. Took them basically from 1987 aproz 2001 to diagnose me and even with diagnosis doctors are still not always willing to listen. So I don't neccassrilly blame it on my self. I guess I kinda also look at it like what did I do to deserve this!? Did I do some thing so horrible that my karma should come back on me 10 fold! But then again I would never wish this upon anyone. And I think I am correct on saying I think all of us would never wish this upon any one. We are so connected mind, body, spirit. One falls apart and the others seems to go with it. It is so hard to keep a positive outlook and not look for reasons and answers and the what ifs? But I am learning from my son and from me that we can what if all we want and it still does not change any thing. My son has crohns disease also. He has had it since 2001. Talk about what if's and why's? Whew I was SO mad. I almost lost him last year twice. He spent 4 months in the hospitol and lost 2/3rds of his colon. I remeber thinking GOD why? WHAT did my son do? He is a good kid he would never do any thing to hurt anyone! So with these experiences i have given up with the what if's. I just dwell with the I can't do this anymore, I do not want to live like this any more, and I just want to give up. But I CAN'T. So I am here with everyone trying to get threw each day the best I can.Just my 2 cents ;-)Corina Quote Link to comment Share on other sites More sharing options...
Evie Posted November 8, 2005 Report Share Posted November 8, 2005 Corina im really sorry to hear about your son...there is no way a child ever deserves to be sick. I dont know anything about chrohnes disease so sorry if its incureable, however if its not i hope he recovers xo Quote Link to comment Share on other sites More sharing options...
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