ladyt

hi.. Sorry ro hear about your momther em.. It seems like illnes/dessisess are somthing one should die of or survive and get over whit.. Keep living whit it is not an oppsion, exept if injured in a careck ore somthing, and then also the person is espexted to figth back to walking.. People are so limitet in their wiew of things, like the use of wheelchairs etc etc.. For me this thing makes my life easyer to say the least. They give me a chanse to live a litle, and ust not onlyu exisite.. The wheelchair do not define me as a person, its an aid.. My mom is trying to be understanding. And in some ways she is. She understands quiet well my limitations. But she has a hard time in letting me talk about my limitations. Somthimes one need to. But she ust cant deal whit that at all. I have tryed to make here understand that i need to vent. Its not that the inless gett the better of me or that I am turning in to a bitter person.. Is so that i will not turn in to such a person i need to vent. Ore ust talk about it, like facts, not complaining about it, but my life is very very very difrent from most folks i know. But people close to me is used to that i dont talk about my illnes ore limitations much. They know very litle about what i have. Some of them are very understanding. Because they have seen the change to the girl i was to the woman i am now. So i know they dont think me a hypocondriac ore somthing like that. So when i started using a wheelchair etc, they where happy for me. They understand that i am in very bad shape. We ust dont talk about it much. Then there is my inlaws. they are the ones living close to my (i do have a tendensie to bad luck, but in my bad luck there is always a silver lining usaly). i dont know, maby some of them is trying in their way. i dont know. They never ever ask how are u..? I would only answer okey, so dont understand why they dont ask.. When i got to know them i didnt talk about my illnes even when asked. So my boyfriend blamed me for them not understanding. Last couple of years i have changed. I have tryed, explaining, but they brush me of. so now i have stopped mostly. But it does anoy me when my mother inlaw says we shall be happy as long as we have our health in place, to me, like me and here should be happy about that. Notmaly after telling about a person she know whit health problems, like ms or canser etc etc.. i must admitt i hate it... Some wrote that nurses is more understanding.. I begg to differ.. Yes my most understanding friend is a nurse, but its mostly here personality. She admitts that being around dying people all the time can make one less ematic than more.. My mother inlaw is a nurse. And others nurses i know, well. They are often better than docs, i will give them that. Not my attension to offend any nurses here. U are probably of the understanding sort.. I wish i could talk about my life openly, and people not feeling bad about it.

hi.. i do feel like that , not as much as i used to. But the more i do the more i feel like that.. And I i look drunk somthimes to. Gett teast about that. And yes whit out the positive stuff. So maby not strange that when i still was abel to take a tripp on the town people thout i was drunk, when totaly sober...

hi.. hang in there... I have been up and down and up and down.. And even when up, i could very quikly get down.. (i am a fainter) now i have had some very bad years and I tryed to adjust to that.. And the adjustments have paid of, last couple of months i have done some improvments.. I know its a very britle balanse. that my healt is better and also not... I cant really do much more, but i feel a bitt better not doing anything , and that in its self is great.. i use wheelchair in house and out of house.. Last week was awfull pots wise, back in the total hole.. This week better, i whent out to day, in a wheelchair and someone to push..=) During the years i have tryed many many things, exesising wise, etc... And i have tryed them again in difrent ways.. now i have tryed acupuncture.. So fare the pots pots stuff isnt really better, but pain is.. And less pain meens a bitt more sleep etc ets.. So i hope it will help whit the pots side effect at least and the how know..? And maby been out today was to much for me, so if this weekend gets to potsy, well.. hopfully next week will be better maby... if u can find a way to not be afraid, not lett the anxiety gett a hold on u, that will make it easyer. But not easy.. We are all diffrent and deal whit stuff diffrent.. And know my brain is gone to a place i am not.. hope this helped, ... u are not alone.. u are not alone

hi everyone..=) i think we humans all need to complain and vent somethimes ( in aproriate portions). healthy ore not. And people are free to complain to me. But i dislike when people complain and complain and then brush of others doing the same. And i must say i am starting to resent perfectly healthy people that when i say somthing (not always as a complaint, ust as a fact, like i am very limited by my health that ust the way it is) they will tell me about some one they know of that are sick and in their oppinion eiteher sicker or dealing whit it better (thats to say sick people working etc)... I feel that is so disrespecting... I use to not talk about my health at all, now i try to find a way to be open about my limitatins so people can gett a better understanding.. And to some i do complain, maby to much, what i complain about is doctors and frustration about the health care system. and family and friends... whats going on in my bodie i talk very litle about.. i try to gett balance in my life... i gess it will take me some more years (the rest of my life i gess...)

i cant use contacts because of dry eyes.. During the day i dont usaly have to use much eyedrops (depends on the day).. But every night, i have to drop before sleep and during the night a couple of times (i wake up because of dry eyes).. So my eyes seems to be worse when laying down and nigth time, make no sence as usually...

hi.. i stay away from er... And for a long time docs.. Trying to gett help from docs again.. still the same mostly.. relax and ignore, i know that drill.. and when not around health people i am very relaxed..

Glad you found us! Sad you need us! well put mrs b... getting this stuff is confusin, and the symtoms can be overwhelming.. Many of us have similar stuff in other ways we differ.. Like some seems to whant to live in the frigde and others is cold all the time... I am very sensitive to cold and heat.. =) I am a fainter, it is not fun.. But its not that scary when u get used to it.. And laying down is a god thing, now i try to do it consosly, not unconsly (soory sppeling, but u understand i hope..)

hi... dont say sorry, everyone needs someone to "bugg"... ... I think most people feel lost somthimes, and whit the extra stuff a cronic ilnes bring, well... I have felt lost, i feel lost, and i gess i whil kep feeling it... Ust have to try keep trying to find some sort of path to follow.. I did gett my self a bacholer deegre, put all my plans for futher education fell trhou because of this fun fun illnes.. All my plans to travell, to work etc... To gett new friends etc.. Insted i have lived most of my grownup life infront of the tv and in my home... losing my friends and stuff.. But i have a great boyfriend (when he is home, not travelling:))... And even thou i have very sad moments, periods of grieving, feel frustrated, lonly (so lonly at times) etc... I am also happy and happy...=)..

hi everyone.. I am sorry but have not been abel to read the hole tread.. Here they have starded to give the swine flue v to cronicall ill.. I have asked my gp and my only spesialist, but i am not in the high risk group they say, because pots is not an organic illnes or something .. This was the same cardio that said i should stay fare fare away from 3-world countrys because of pots.. This dys/pots thing keeps me confused, and not having docs whit much knowlegd doesnt help.. And the fun part is that docs dont belive in info from internett either so... But i dont know if i would take it either.. I have gotten ill from shots in the past so... i am ust confused about well everything i gess....=)

hope it last...=)

c- vitamis work for me.. somthimes i have to take more then recomended...

have the same problem.. and no solution..

also go both.. and somthimes blue...

hi... i used to be so cold always... others would be in bikinis and i under layers of wool... When i started gutron (midodrin), i got a bitt better... Now it varies a lot, often during a day.. I try to keep an even bodytemp, but its not all that easy.. i have a heat blancket in bed (wounderfull), i find that varmweather botles and similar stuff work better than raising the temp in the room (as long as the room temp is warm already).. And there are this small heatpacs u can by and use in our shoes and mittens.. ( i use it in the winters when out somethimes)..

jupp... and now i have more ore less cronic insomnia.. very fun...

hi... It is not selfish to not have children.. But if u choose a permanent solution ore not i would use some thime to think about it.. I always whanted to be over 30 before having any children, and i whanted to adopt.. What others feel about this is not the important, its what u feel, and how long u have feelt it and why thats important.. i am over 30 now, because of pots i will not be abel to adopt.. And it seems like people think it would be very selfhis for my partner and me to have children.. adopted ore the other way.. so...

hi... i think most of has been there.. I read two book writen by a hypochodriacs doctor (yes, he treat people for that)... he whants people how are hypochondriacs to be taken serious.. he write like a doctor, and somthimes during my reading a feelt abitt frustrasjon against him.. And reading tha books a understand why we as a group fits the bill.. We have a very complex and fluxation symtom list... But i am not a hypochondriach, or something similar, and neither is the rest of u.. Docs ust have to understand somthimes hovs are sebras , not horses... We need more sort of jonny docs, nobody puts pots in the corner...

hi.. i still have it, but the worst stopped after stopping using cow milk ...

hi.. have tryed accupresure and reflexology befor whit out possitive effects.. Now I am trying acupuncture in hope that it will help whit my insomnia and pain.. time will show..

hi .. u have the same questions i have... the docs here ust say there is no more to do.. and then i se at this site, that there is... and then the doc say u cant trust internett.. i dont think i can trust them either..

funny and so so true... i made my boyfriend read it..And posted it on my facebook site... =)

i dont.. not anymore.. but some are better than others.. and some are good and really bad in one ( like when going shopping and then after being ucky, well i dont go go, i wheel wheel.. )

hi.. i have fainted sitting many times during the years.. But much more standing ..=)

hi... I dont drive, miss it, but are not allowed.. And I gess that is right, but still miss it...

hi...=) i would gett cravings for lacrish (the blackish stuff that rais bloodpressure=)).. And so will my mom, spessialy when pregnant whit me... Now not so much, but my bloodpressure is not so low either.. I would usally prefer the salty to the sweet.. I have always been a floor person, feelt more comfortebal at that level .. And preferd to have my feet up, ore curled under me.. hated waiting in line etc.. preffered to walk than wait for the bus.. ust hanging around never been fun... And I have always hated to pick stuff up from the floor, early i would use my feets insted of bending when possible...