ladyt

so sorry for u, and the rest of u fining out that not all stick throu the sicknes part.. Hope u all find happines els where ..

so sorry.. hang inn there...

hi.. this is a hard one... my boyfriend is luckly not expeting me to to half the house work.. Well half and half, he is not very happy about cleaning.. So now we are gonig to get some one to do the floores and bathroom every 14 day..My boyfriend was a bitt worried about the cost of it.. But even thou I have lowered my exepetation, well some housework needs to be done.. And there is so much my boyfriend has to do when his home, he do the shopping, cooking ( I am a terible cook even on good days, so he refuse to eat my food, and I dont blame him ), and there is a lot to do around the house a lot.. And when his gone working (he travells), its loonng days.. but somethimes he feels there is moore work at home then at work... .... And I feel bad, but as many has said, including kayjai, if we had a choise we would be healthy... But the dys influense my relationship, I feel that i should be always graetfull for having a great boyfriend that stays whit weak weak me.. And yes one should be greatfull for great people in ones life.. but this is a bitt unbalanse.. i feel he gives up so much for being whit me somethimes... But I am also a great woman I am generly in a much better mood then him.. i dont know, relattionships needs work even for healthy people... I gess one ust have to keep trying.. Comunicating is important, but not always easy.. Mine lovly boyfriend is the no talk is nessesary type but so fare we are still togetter, and i hope it stays that way, intill we are a old couple holding hands in public.. No we are not, because he push me around in the wheelcair.. But maby when we are old, we whil be in wheelchairs side by side, and nurses pushing us... When it comes to understanding dys, its hard.. I have tryed to gett my boyfriend to read some stuff, but no luck (not whit anyone els for that matter).. But he is very understanding, and somthimes knows my limits much better than me... he is the best thing that ever happend to me..

hi.. dont know about the rest, but garlic make me very ill indeed.. And not only me but my mother and brother (and as fare as I know the dont have dys, but my mother has always had low bloodpressure..).. And the sad thing is, i love garlic... And they put garlic in everything, ust like cowmilk (and a also dont tolerate)..

hi everyone.. u are all so strong.. stronger than u think... And the think about life treatning or not.. I am so sick of it.. For some of u it is very very life treatning and some of us , well more than the heatly ones out there... And life althering, yes. like one of u wrote, have forgotten how it was to be heatlty... And I am going to my gp tomorrow, if i could change i would, she is in the not life threatning type.. I am blessed to have some (if not always) that try to understand, and admitts that they cant.. then there is the other ones, its so hard somthimes, spessaly when u cant ust shout them out of our life.. Ust have to keep hoping them will se me for what i am , like i try to them... They Are for the most part not cruel, ust ignorant... but somthimes it hurt the same on this end... best of luck to u all

Hi My first ttt was a waste of time.. they had never done it before.. And luckly abrode I got in contact whit a doc that whanted to do the tests over to be sure they had been done rigth (he also orded my journals , well my mother got them for me).. And during my second ttt whitin a very sort time i had a diagnose.. And he sayd what i then knew, the first one was done whery wrong.. best of luck

Hi.. i have always been hit hard by travel sickness, even as a baby.. I prefer sitting in front (dont driwe)..

hi.. it might be a small comfort, but u are not alone in beeing more or less bed/sofa/house bound.. I have been so more and less for more years than i whant to remember... I have severel whelchairs and someother stuff, it helps me on god days and bad.. on god days it makes it me abel to leave the house somethimes.. And being abel to leave my house is essensial for my mind...=) Staying indoors for weeks whitout being abel to get out is not fun.. But still my time is mostly spent in front of tv.. And my dvd collection is growing qouite bigg,,,=) I hope u all have some nice time this summer...

hi...=) So great for u..=) wow.. And great for the rest of us to, there is hope.. there is docs that lisen and care... Ust wounderfull...

hi.. So sorry that u had to meet such an irgnorant doc... And it seems like lots of us here have meet docs like that... If any doc has diagnosed me whit munch i dont know, but far to many have told me that it all in my head, I am ust to sensitive, etc etc.. i hoped when i got my diagnose that i would meet some more understanding, and some i did.. But also much the same.. one doc ones told me that he didnt understand why i was not working, my condition was not a problem unless i was climbing a leather ( ledder? u know the one whit many steps u put to gett up on the roof etc..=)). And as befor writen in a post, munch is a very very serios mental illness that docs should take very serious if the really suspect that in a person.. Lets hope there are getting more curios, understanding and serious docs out there...

hi..=) I think my cardio is the one that knows the most (where i live), and he does go on conferences on this topic.. Whit out him I would be totaly lost... But i have so many questions, and very few answers. And even whit dealing whit symtoms docs are not really helpfull.. But i gess all i can do is keep trying.. And maby hope for some of the info on line will stick to my brain... And i would really like to know why.. because it seems like there is a lot of reasons why people have pots/dys.. And if I know why maby it will be easyer to treat.. or maby not i gess... ... So many of u that know why..?

hi every one..=) hope u all have a nice day... My boyfriend have tryed to make me talk about me illnes for yrs. And i am more open. How is people to understand if one dont tell, but at the same time people dont understand.. So i try to make it a rule to answer if people aske, and if its natrual in the convesation.. But i dont like it when people i dont know start asking intimit question about my health, even befor knowing my name.. Ore maby being friends of my parents and probly hearing about it from them.. I am more than my illnes.. But my illnes form my life also.. thats ust the way it is.. I have come to terms that working is a long way of for me, and that there is a lot I whant to acomlis befor that.. Like a more stabel health, a sosial life of sort etc, being abel to take a shower etc.. Now i do stuff whit litle or no time limit, like knitting and stuff.. People seem to have a hard time understanding that i can do some stuff like that and not work.. But they dont se me the days I cant even think a litle.. that was a bitt funny, latly some have given me advise about controling a running mind (like people whit tendensie to worie or anxsieti has), and I have to tell them that i dont have that problem , a really have the opisitt problem, my mind dissipear.. and its happening right now.. so so long u all..=)

hi.. it is not easy for others to understand.. And even for us whit the same stuff will have difrent experiens of how living whit dys is.. Even for my its diffrent all the time, ust not the symptoms but how i deal whit it.. Some times I am very sensitive about comments, it depens on diffrent stuff and people.. I am a bitt sensitiv about comments from some people, like my in-laws (i am not married but have a boyfriend)... Like when instaling blinds my mother inlaw comented ower and ower again that i did not need the remote controll because i needed the exercise.. ore tha many many people asking what do i do whit all my time, and acts like my time is not so importen because I have so much of it bein disabeld. Well ther is areason for it.. i try to ignore and have in mind that people are mostly ust ignorant and not cruel .and that they might try to understand, its ust dificult for them to do so.. but i am only human, and somthimes being around others takes more than it gives.. And then there is all the advices, i gess kind given, but not always recived like that.. like me whit my insomnia, ust exersise then u sleep like a baby. well being exersise intolerant it doesent work like that.. i try to find the balanse between telling and not about my illnes.. Not easy.. Some i gess try to understand, others not so much.. But some comments are funny, like u are to cute to be sick...!!! ore u are to smart/resorsfull to be ill (so only so called weak people gett ill??) Life is life my mother inlaw ones sayd that we should be glad we had our health (her an me that was, yeah right..)

hi.. its not easy being cronicall ill.. Somethimes i ust whant to scream, i ust dont have the shtrengt... hope it helped to wine some.. it helps me..

hi.. to the north of u..=) we are suposed to have the best healt care, and for some we do.. but not for me.. i am so tierd of being my own doc.. I know i know my health best, but i am not a doc.. i dont know maby i should ust surrender..But i do have a plan to get my overworked gp more involved.. So far all she whant is to gett me out of the office as fast as possible..

Hi every one..=) I am ust so frustreded whit this dysautonomia stuff. had it for yrs and yrs.. And know so litle about it when it come down to it.. And the doc even less.. I was ust woundering what test have u taken..? an wich test are essential to pots/dysautonomia.? I had the tilt a couple of times, thats how i got the diagnose.. But i dont know why, and a understnd that there is difrent types.. I try to read up on tha nett, but my brain is teflon, and i gett so very confused.. I have a nice cardio doc that i se once a year (somthing like that), he is the one that have actually tryed to help me, and but me on gutron.. But he only know and can do stuff for my hart and blodpressure.. he says the reason is probly in nerolygi (sorry missspelled)... So He told me to se a nerodoc. So i did, the first time she felt she had to litle info.. This time sha said right away that there where nothing she could do for me.. that cardio was the right doc for me.. And that she saw no indication for parkinson dissise, (neither do i, but something is very wrong).. And then she asked if i had queastions etc.. but i was a bitt put of by the start of the converastion.. I am gratfull that she read my journal etc.. But i know that there is lots of wrongs in it.. Docs are very bad listners, even the nice onse.. I skiped a hollyday to go on this appointment, she could ust have called me on the phone.. I feel so frustrated right know... Is there not anything to be don..? no way to find the reason why..? So no its back to my gp, how coudnt care less.. My plan is to write down test I havnt done that are usefull and ask here to do them.. i am so sick of being my own doc... so sick of it...

hi.. i used to love going to the movies.. but very seldom no.. Actuelly diceided not to go for a while.. The noise is not to much of a problem 8and if it is, i av speasial earplugs.. My bladder is, i go on meds , but still.. and then the movie theater, to many stears, and i use wheelchair so.. but are planning a cinama room..=)

hi.. i think the docs all ower the world need an update.. live in europe (not uk). Was told it was so seldom. but now my cardio says its not so seldom as they belived.. i think there is some white me/cfs that have pots or something like that.. And i have seen many pots people from uk online.. best of luck..

hi.. my doc has told me that I cant take migrain meds as long as i use midodrin.. But i have found other ways to lower my migrains (still there but so much better).. I have stoped using cow milk.. And also using honny every day in my te has helped.. weird but ..

hi ... sleep is wounderfull and so undervalued by people getting it... Mine is bad, and somthimes worse.. I use meds somthimes, to gett some rest (but seldom slep the night trhuo on them also)... And is varies, somthimes i sleep rather quikly ( after 30-60 ) min , other nigths it takes all nigth... .. i ust had a sleepstudie, and got my results to day.. No sleepapn (didn think so , i dont snoore), and no narcoepl (i have no ide about the spelling).. Ust very bad sleep, and no indications on why... (nothing new) so acording to the doc i have inital, medial and terminal insomni... i had 8 % rem sleep and 17 deep sleep... But i have no idee about what that meen.. I have looked around the internett to find info.. But not much usefull.. I have been to another sleep doc, He whants me to do the less hours in bed thing.. and i try, but my pots getts worse... And the last couple of days I have had very dificult to gett awak in the morning.. I periods its very easy.. And its not influesed by the amount of sleep i gett.. And of course i am always tierd..=) I dont know what to do.. the sleepmeds i can only use somethimes (they stop working).. Painkillers helps a lot too (from no sleep to some, I have been takeing them half a yr..) I dream of a nice night of sleep.. But so fare its mostly a dream..

thanx all ..=) I will see what I will find on-line.. Doubt they have it in the libery, but u never know..=)...

hi.. yeah on the nett there seems to be a lot of mvp books.. I ust whant to know all I can gett my poor brain to absorb.. =) Well the one grubb book I learn more then from any doc..

Hi.. Ust whanted to know if and what books folks inn here have found usefull when dealing whit dys.. I have one of dr grubbs.. and stumbled owe this one (have not yet bought it), physical manoevers to prevent vasovagal syncope and initial orth. hyp. by Paul Krediet.. Have any of u this one.? and is it any god.?

hi.. I gett sick when gett my hair colored at the hair dresser.. And most colors for home use make me ill too.. But I use an organic now, its the only one that I can use.. i by it at a organic store.. I dont know how its around u, but some hair dressers have organic colores... Even loreal have one out now i think.. becouse of the hand above head thing i gett help or do it on a very lilte potsy day...=) best of luck

hi.. I understand where u come from.. i got my first wheelchair yrs ago.. i tryed to use it as litle as possible, and it limited my life.. Now I have a indoor el.chair a el.outside chair and a normal one.. And some other stuff.. it makes my life more of a life.. i still somthimes feel consiuos about using it, spessially when meeting people that i sort of know .. So when i dont think about what others are thinking and feeling bad for my self for being ill.... well i love my wheelchairs too..