extern14 Posted November 29, 2009 Report Share Posted November 29, 2009 Hello, all. Just needing to vent as I am feeling very frustrated right now with my POTS. Since my diagnosis in April, I have not had a good year. I have not been able to work since June and have been fighting for disability. I'm 30 years old and I am struggling with the fact that I can't live the normal life that everyone else seems to be able to do with such ease. I know there are many of you, if not all, that will understand so I am turning to y'all for help and guidance. I feel like my medicine isn't doing anything. Exercising seems to make things worse. Due to financial difficulties, it's hard to eat healthy when you can barely afford food. My family thinks I am just being lazy and I feel guilty for not working. Any suggestions as to what you have done to help you through these times would be greatly appreciated. Thank youSigned,Sick & Tired Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 29, 2009 Report Share Posted November 29, 2009 Hey Kari-I'm sorry....many here can relate. Is fatigue your biggest issue? I notice you are taking both Wellbutrin & Lexapro- I assume that's on purpose, not precribed by two different docs to treat the same issues? Both can make you sleepy.So can Reglan! There are other meds, that act as a GI prokinetic and don't cross the blood/brain barrier. Reglan can have nasty neurological side effects, some of which can be permanent. My son took it for 6 months before we realized IT was causing anxiety and restlessness. Lawyers here in GA are regularly appearing on TV, looking for clients whose docs prescribe reglan. Trust me, there are better alternatives.Just a few ideas of things that might be contributing... Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted November 29, 2009 Report Share Posted November 29, 2009 Hang in there Kari!It is normal to have times of frustration, we all have those days, weeks, years of moving forward two steps and then back two and then falling down. We are with you on this journey so do vent. You are not alone. Some people do improve. Maybe you just need to work on a new treatment plan. Rethink the meds? Upgrade compression? Hydrate with electrolytes? Take a nap?As for what I do that may help you a bit.... listen to music, read, write your thoughts down, come here and share. This syndrome will wear you down faster unless you take time to recharge.The worst thing use to do when I was in a potshole/rough time, was to stop and compare how much "others" were doing and how much I had "lost". Please try to learn from me and don't do this to yourself. Try to take what gifts you have and can use and maximize those!On another thread "Maisie", posted a link to a song her brother suggested we listen to, the song is "War of My Life" by John Mayer. I think you may just find this a healing song to listen to. It is my Theme Song for now.I'm sending you virtual hugs and sitting next to you while you are figuring this out. You will survive!Best regards,tearose Quote Link to comment Share on other sites More sharing options...
scarfgirl Posted November 29, 2009 Report Share Posted November 29, 2009 ((((HUGS))))I can relate. I'm 31 and I'm currently off all meds because nothing was working for me. Going in Monday for a complete reevaluation.You haven't been diagnosed long, so don't give up hope. It takes a long time to figure out which meds work. If what you're on now isn't making you feel better, try something different. Accept things are gonna be majorly sucky right now, but do know that things will get better. Until then grasp whatever happiness you can and feel free to come here and vent. Your family may not understand, but people here will. ....yeah I'm not good with advice. Points for trying I hope. Quote Link to comment Share on other sites More sharing options...
ladyt Posted November 29, 2009 Report Share Posted November 29, 2009 hi...jupp one getts really sick and tierd of being ust that. But dealing whit life i gess is a chalenge for most of us, healthy ore not. And dealing whit life demands diffrent ways at diffrent times. i am in my eraly 30is, when i was in my early 20 i belived i would grow out of this stuff. So i thouth my plans would be able to go in to actions then. That didnt happen. I am still sick. And somthimes very sick and tierd of being ust that.The symtoms it self i deal pretty well whit, i am very used to them. But the side effect of them on my abilety to live my life i still strugle whit. how much depends.Not being abel to leave the house much, end when having some one whit me. the strugle to try to keep some sort of sosial life. etc.trying not to compear one self to others. because that is not very healthy to do, but i still do it in some ways somethimes. But i have found somethimg out, healhy people are unhappy too.. Sinsce stress is not god whit pots i try to avoid it. And mostly i do. The types of stress people around me have, i mostly dont have. being on welfare i dont have to worrie about climbing the coporate ledder, a bad boss ore stuff like that:)We are all human, so try to give your self some slack. I use to think if i ust stayed positive all the time and fought (fight) hard i would gett healty. Because its all in the power of the mind. i have learned its not. U cant concer everything, U cant gett every where and be everything in the world. And u know what it doesnt matter because u can still be happy and content whit our life. Dispite being ill etc. And being in constent war is not away to be happy. In our sosaitey we are so focused on being winners, that we forgett that in a contest, well there is only on that winn. Ther rest are losers. So my coal is to be as healthy and happy/content as i can be. To find ways to gett the best i can out of the life i have now. Living whit the illnes, not fighting it, acsepting it. is it easy? no, but hey esy come easy go...I think its importan to grive, to be a bitt sad when needed. To rent and complain a bitt. ust gett the negative flow trhou and out of the system. So that one have room for the positive to grow. And to know that there will be blue hours and dark days. The thing is to find away in that darknes ore twilight.And crying is a great stress reliver actually. So since stress is bad for us whit dys, its medicin..The thing is not to drown in ones sorrow or grow bitter. The one person u can never escape is our self. So i griev and are sad by rules. Somthimes i have to change the rules thou...Somethimes it workes to remined one self that others in the world are much much worse of. But i must admitt that others saying that stuff to me often anoys me. it feels like they dont understand what i am dealing whit (and they probaply dont). i feel belitled actually. But for me to reminde my self of it is difrent.=)One allways hear the klisje of apritation the litle stuff. But its a reason it is ust that. I have my prozac stuff, like diffrent types of movies i love or tv-seris. Since that often all i can manged to do, its importan to have does for me. And if i need to cry i have a cd for that;)I have a book case full of books, i dont often have the consentration to read them, but they are there. Ready for me. And i have started to read easy read books, not bothering about remeber what i read.I have learned to do some crafting i can to from my recaliner, like knitting. i dont do it fast, and a really not that god at it, but i am getting better. And i have somthing to be proud of..When i started to write this i had a clear ide how what and how to write an answer. But my funny brainfog have interupted my plans so..it might be imposible to read or gett somthing senible out if it. But i are not alone. And this site have been very helpfull for me. so hang in there, life might not bee what u dreamed of ore planned. that doesnt mean your life wont be wounderfull etc. Quote Link to comment Share on other sites More sharing options...
pat57 Posted November 29, 2009 Report Share Posted November 29, 2009 casper,thankyou,Very well said ,and helpfull to me- also Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted November 30, 2009 Report Share Posted November 30, 2009 Helped to me too. .....it is so normal to be sick and tired of sick and tired...I do belive we just hang in there...live thru this and it does change...thanks for your post...we can all relate.Erika Quote Link to comment Share on other sites More sharing options...
extern14 Posted November 30, 2009 Author Report Share Posted November 30, 2009 Thank you so much. I will definitely listen to the song. I do write a lot more and I try to read but it doesn't always work out. And you are right, I have been thinking about what others can do and what I can no longer do. It's very frustrating so I will take your advice and not do it. I think we can all use one less frustrating event in our life. I will cherish the moments more! Thank you for your virtual hugs and for sitting next to me. Know that I am accepting your virtual hug and sending one right back to ya! KariHang in there Kari!It is normal to have times of frustration, we all have those days, weeks, years of moving forward two steps and then back two and then falling down. We are with you on this journey so do vent. You are not alone. Some people do improve. Maybe you just need to work on a new treatment plan. Rethink the meds? Upgrade compression? Hydrate with electrolytes? Take a nap?As for what I do that may help you a bit.... listen to music, read, write your thoughts down, come here and share. This syndrome will wear you down faster unless you take time to recharge.The worst thing use to do when I was in a potshole/rough time, was to stop and compare how much "others" were doing and how much I had "lost". Please try to learn from me and don't do this to yourself. Try to take what gifts you have and can use and maximize those!On another thread "Maisie", posted a link to a song her brother suggested we listen to, the song is "War of My Life" by John Mayer. I think you may just find this a healing song to listen to. It is my Theme Song for now.I'm sending you virtual hugs and sitting next to you while you are figuring this out. You will survive!Best regards,tearose Quote Link to comment Share on other sites More sharing options...
extern14 Posted November 30, 2009 Author Report Share Posted November 30, 2009 Exactly what I need to hear. THANK YOU!hi...jupp one getts really sick and tierd of being ust that. But dealing whit life i gess is a chalenge for most of us, healthy ore not. And dealing whit life demands diffrent ways at diffrent times. i am in my eraly 30is, when i was in my early 20 i belived i would grow out of this stuff. So i thouth my plans would be able to go in to actions then. That didnt happen. I am still sick. And somthimes very sick and tierd of being ust that.The symtoms it self i deal pretty well whit, i am very used to them. But the side effect of them on my abilety to live my life i still strugle whit. how much depends.Not being abel to leave the house much, end when having some one whit me. the strugle to try to keep some sort of sosial life. etc.trying not to compear one self to others. because that is not very healthy to do, but i still do it in some ways somethimes. But i have found somethimg out, healhy people are unhappy too.. Sinsce stress is not god whit pots i try to avoid it. And mostly i do. The types of stress people around me have, i mostly dont have. being on welfare i dont have to worrie about climbing the coporate ledder, a bad boss ore stuff like that:)We are all human, so try to give your self some slack. I use to think if i ust stayed positive all the time and fought (fight) hard i would gett healty. Because its all in the power of the mind. i have learned its not. U cant concer everything, U cant gett every where and be everything in the world. And u know what it doesnt matter because u can still be happy and content whit our life. Dispite being ill etc. And being in constent war is not away to be happy. In our sosaitey we are so focused on being winners, that we forgett that in a contest, well there is only on that winn. Ther rest are losers. So my coal is to be as healthy and happy/content as i can be. To find ways to gett the best i can out of the life i have now. Living whit the illnes, not fighting it, acsepting it. is it easy? no, but hey esy come easy go...I think its importan to grive, to be a bitt sad when needed. To rent and complain a bitt. ust gett the negative flow trhou and out of the system. So that one have room for the positive to grow. And to know that there will be blue hours and dark days. The thing is to find away in that darknes ore twilight.And crying is a great stress reliver actually. So since stress is bad for us whit dys, its medicin..The thing is not to drown in ones sorrow or grow bitter. The one person u can never escape is our self. So i griev and are sad by rules. Somthimes i have to change the rules thou...Somethimes it workes to remined one self that others in the world are much much worse of. But i must admitt that others saying that stuff to me often anoys me. it feels like they dont understand what i am dealing whit (and they probaply dont). i feel belitled actually. But for me to reminde my self of it is difrent.=)One allways hear the klisje of apritation the litle stuff. But its a reason it is ust that. I have my prozac stuff, like diffrent types of movies i love or tv-seris. Since that often all i can manged to do, its importan to have does for me. And if i need to cry i have a cd for that;)I have a book case full of books, i dont often have the consentration to read them, but they are there. Ready for me. And i have started to read easy read books, not bothering about remeber what i read.I have learned to do some crafting i can to from my recaliner, like knitting. i dont do it fast, and a really not that god at it, but i am getting better. And i have somthing to be proud of..When i started to write this i had a clear ide how what and how to write an answer. But my funny brainfog have interupted my plans so..it might be imposible to read or gett somthing senible out if it. But i are not alone. And this site have been very helpfull for me. so hang in there, life might not bee what u dreamed of ore planned. that doesnt mean your life wont be wounderfull etc. Quote Link to comment Share on other sites More sharing options...
Griffin Posted December 1, 2009 Report Share Posted December 1, 2009 Sick and Tired of being Sick and TiredSums me up at present. Went through a long patch 3-4 years when I accepted it all. Not any more. I was offered some hope with treatment and and I felt over the moon, then the consultant changed his mind and then I was dashed back down on the rocks again.Find keeping my expectations low allows me to feel less disappointed. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 1, 2009 Report Share Posted December 1, 2009 I was offered some hope with treatment and and I felt over the moon, then the consultant changed his mind and then I was dashed back down on the rocks again.So your treatment was stopped or never even started? Perhaps a new doctor might be a good idea. Dont give up - there may be far better treatments just around the corner. Quote Link to comment Share on other sites More sharing options...
ladyt Posted December 3, 2009 Report Share Posted December 3, 2009 hi..i hope stuff goes better now, if not keep renting..=) I am glad that my words could be of some sorts of help to some one. spesaly now when my selfestem is not to high.. i wish u all a nice week Quote Link to comment Share on other sites More sharing options...
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