ladyt

Hi.. I hope u gett a great time ower there...=) So many wounderfull places to go, and nice people to meet..

Hi.. last years i have tryed diffrent forms for exercise and no luck. But the one form i do toltrate is in a heated pool.. I dont swim much yet. But i find it esyer to stand and move in the water than on land. Its hard to gett out, really feel the gravity. I use wheelchair on land so. for me the water helps..

hi.. I gess its hard for any person to stay positive at all times, healty ore not... it is somthing one have to work on, and not feeling like giving up on when its the darkest. When its the darkest in the nigth u se the stars more easy. (ofcourse not on a claouded nigth..) Its many ways to live one life and we all have to find the right road .. Yaeh its sounds klisje, but that doesnt make it less tru.. For me i know that happines can only come from inside of me. I am the one to choise how to react. I know people haveing it all and still so unhappy.. Somthimes a god cry, a bitt of anger and realising frustration is the way to gett to that better mind stat. In periods its takes litle to gett there or stay there. Ore maby one live there full time.. Other times its more of a strugle. And we are glued diffrent togetter. I have my blue moments my darkes times. But i gett trhou them. Some times quik somtimes it takes time. But i gett in to the sunshine again=) I gess i am lucky to have easy mood genes. I know that its not the case for every one. But i do also work at it. I try to she the silver lining in everything. And know i exept when i have to dive in to my missery. If i need a day to griev or somthing.. Now I have had to lovly mnths mind wise. But I have been very potsy and spent most of my time in bed ore infront of the tv.. I have my favorit dvds for diffrent mods etc. I have lots of knitting projrct laying around me. So if i can i can do some. If i cant well, sooner than later i will be abel again. if only for a litle time.. If i havnt been abel to shower for some days etc I love the feeling of water down my bodie. I love the smile of my dear dear boyfriend (its ofcourse easyer to be happy when his around).. well eleanor roosvelt said: its better to light a candle than curse the darkness.. and viktor frankl said; when we are no longer abel to change a situation, we are challenged to change ourself... (how the frankl person was , no clue...) and this one I have been saying since lilte girl, but here in the form of another persons q; Ive decided that the key to happines is low expectations.. laura Monur (dont know here either) And somthimes u have to griev and gett ridd of some bad bags on on shoulders and aoround ones hart to gett rom for the happines.. =) I,ve

when i was singel i had a teddy dog in bed. And once i was in the hospital my boyfriend had to pic up some clothes and stuff for me. He tok litle of use, but hi did bring the teddy. I didnt ask for it. It was so cute of him to do it . But i got really embarised at the time. Mostly because of the nurses. But now i see i am not alone... Now the teddy is on a shelf, exept for when my niese is here. But I do have a living teddy dog now. I today is new years eve. He is really frigthen by fireworks so.. Lukly they are stricter on when u can fire it now.. So I havent heard one yet to day. This time last year hi was a nervous reck. later we will be in the basement (it freezing cold out side so ..) and see a noisy movie. have a better sound system and a large sreen down there. A sort of mini cinnema , ust borrowed some stuff. But its sort of adictive. i think i would like to have it premanent..=) when it comes to other silly stuff dont know.. i gess some find me silly so i migth be my own silly thing.. Maby my new year relositon shuold be to be even more silly, lett the silly out, not hide it show it of...

i have a litle one .. its faded so.. i Whant another one, have for a long time. i know what motive i whant but havent found the perfect one yet so...

congrat.. so cute..

hi.. tammy i did feel like u for a long time.. But i love my wheelchair.. Whit out it i would be totaly homebound, and chair bound.. my litle indoors and out doors wheeling wonders makes life more easy. Still i am mostly in my recaliner, but not all the time like before. So yeah people can be rud and lack understanding, but life befor and after my wheeling aids are to diffrent things. i prefer the rud looks..

hi.. It depends for me.. It can have a pain reliving effect for me (but somethimes i gett more pain becuse of it so). And at night it either makes me sleepy ore quite the oppesite so... But i prefer quikes and litle forplay now.. i gess my partner should be happy about that, the no forplay thing... I am very position limited so that is a bitt boring. i have fainted during sex, its not a turn on I gess a litle limited is better than non at all... But i miss being a bitt more active in the act....

hi.. poppet jupp alot of people gett nervous around visible disabeled people, i did somthimes before and somthimes now also.. So when people flicker etc that doesent bother me, i know its unsertendy. peolpe givning me the sort of evil stare i try to ignore or stare back as strong as i can. Yesterday (finaly, after been homebound most of des) i whent whit famlily to do gift ecahnging. In my chair ofcourse, my lovlye easy wheeling wounder. I whent to this dvd store to do some echanging. But the only place i could get to was the caounter. I entered the shopp alone. There was few people there. the two people working there ust looked, didtn ask to help or any thing. Then my friend come and we tryed again to gett to the dvds, no luck. So i asked to gett a giftcard for the amunt. And i told them i couldnt gett around even a litle in there store. they dud ust said yeah, thats ust the way it is. and now hi had a kid in a stroler hi know how anoing that was... yeah rigth.. They could have moved one of the selfs a litle and one could have entered a bitt of the store at least.. But they have a store in a nother mall, and i think i will be abel to gett to some of the dvds there. And I also got the we dont se you and snik in line yesterday.. they do so se me, since they hit thery feet on my chair. But this sweet lady was so apolegetic, she was oo u go a head of me etc etc.. she was before me, but some sniky snikers outlined both of us... .. sorry my spelling is all over the wrong to day, and the words are ust not in my brain.. thats to say, they are lost somewhere there in the for i gess...

hi.. i did gett gray hair early. I have very thick hair origanaly. My hair was my best feauture intill 19-20. Now its very very mody sort of. And i can lose a lot in periods. lucky i still have periods whit ticker hair (not as thick as it was but still). B-vit helps some..

merry xmas.. hollydays can be troblesome. To day a was suposed to go to my inlaws for 1 day meal. my partner is not home. But desember have been hard . I ust stardet to gett a bitt on the pluss side. And luckly manged to go for x-mas dinner yesterday. I was invited whit to a siblings inlaws. so nice of them to include me. Today i canseled my inlaws meal. I am really to ill. But even if i was a bitt better i wouldnt have wasted my healt on them to day. they think its ust nervs.. i am so fed up whit them not trying gett to know me. I am really easy going and relaxed. But now i am what some people acuse me of being. tensed. My neck is tight tight. I need some emosianal relase. it use to be enouf ust to coplain a bitt and gett it out. i cant lett my inlaws go on my nervs But they are the people i meet most. i dont know ehat to do. I gess ust ignore them. but esyer sad than done. Now i am waiting for them to return the dog. Soon i hope. i miss litle doggy. And i need some privat time. yeah I have been alone the hole day. but knoe they can be on my door steep any minute. i need i bigg cry. realse some stress. I dont whant to feel this way. i whant to be me, and they acsept me.. Jupp i belive in st.caluse I might write a complaining sheet and burn.. And def lisen to my sad cd, angry cd, and sweet dvd.. But i dont know what to do whit my neck and back.. I usaly dont gett so stressed out. I gett rid of it before it gett so bad.. So any advice..? how realise stress from mucels..? well have a happy x-mas every one..

hi... I know very well what u mean i think. i whis my brainfog was not so heavy, becaus your post toches on some of the things about illnes i have been strugling and goin trhou a prosses whit. And yes there are very much difrenses between illnesses and other types of dissabilitys. People can be facing death, and still being heatly in away. And then one can be severly disabeled and not dying. I also wish my first laung was english today. I am strugling to find the words and sentences to use.. i will try later.. but u are not alone.. importan subject

best w for u too..

hang in there... like it has been said the yeah i am getting better and then the rugg gett pulled under u part is not fun at all.. but the being closer to healty is cool.. but mentaly the sort of rolecoster is hard..

does wigling your toes count...? My goal this year have been getting to a hot swimming pool and do some movements standing in the water. I was abel to go 3-4 times.. Not having any one to take me a bigg reason for not more.. This year my goal is 12 times, but would love 1 time a week. ore every 14 day.. I have tryed yoga and have recumbent bike. But havent made it work yet. even did the yoga laying down. so my goal is to keep using my arms by wheeling my self as much as posible when out. and every day stand and walk as much as i can whit out over doing it.

hi... I am happy u swallowed your pride and used a wheelchair. I am sad about how u was treated. I got my first one yrs ago (about 9 i gess). i was then bedridden. And the first chance i had i didnt use it. But it limited my life gratly. And when i got worse again i started to use it somthimes. My first one was very heavy and nor easy for me to handel. And it looked like the one in hospitals. About 2 yrs ago i got a new one. Actually i now have 3 difrent, one indoors, one el, and one manuell. The new manuell is easy to handel, and in malls i am abel to wheel my self around a lot. And that is ust so great. And the wheelchair looks better than my old one. i got more steared at in my old. I had to be pushed around in that one. Now i gess many people think i have been in an acsident. People have weird idees about what sort of people use wheelchairs. My wheelchairs are aids, that make it posible to do something and have some life outside my reclainer/bed. And i have grown to sort of love them. But others people reactions is somthimes very rud and anoing. And i dont think about children staring, that i think is funny, spesaly when the parents gett embarrest...=) But getting in to a store and they turn to the one whit me and ignoring me. When I am feeling rater ok i ust make a point of catching peoples eyes so they have to talk to me, and talk desievly. In some stores i gett a lot of help others non at all. Mostly I have some one whit me, so i gett the help from them. But if i am on my own (mostly when tha person whit me is in a nother store etc), i mostly gett totaly ignored. I have notic this, and found it weird. because thats when i need help getting stuff from shelfs etc. I gess i somthimes is harder to see since i am lower, but.. And there are people that are very helpfull and understanding. But u do gett treated difrent, both negatvie and positive way.. And the staring i deal whit by staring back (when feeling to potsy i gess i ust sitt there..) The ting i dont totalrat is people asking in a rud tone why are U in a wheelchair.. ust happy most people are not that rud.. they ust ignore me insteed.. But i have actually been puched away by strangers, that is rud rud..

hi.. this is an intresting tread.. and i wish i could read and respond better to it.. but i have had an awfull total potsy time latly.. started whit my period and it ust would lett go.. (i never gett e 0 potsy day) but latly i have been abel to do litle some days... Were i live its counsiderd very inpolite to ask questions about others healt and why u are in wheelcair.. so very few do.. some people asking i ratter like, but some i dont.. its all in the way an how the do it.. Like i hop i are going to ditch that chair soon, ust figth harder etcetc.. i had lots on my mind about it.. but i have to stopp now.. wish u best...

hi.. i was told ower and ower by my docs that i ust had to ignore my symtoms and fainting.. so that was what i did. And exept for the fainting (a bitt hard to hide, but posible if no one sees u go down, then u can say u fell if u are not fainted for a long time ). Last couple of years i have tryed to be more open. Tryed is the word here. I use mostly wheelcair when out, and i have one for indoors too. But when some pepole visit, well i use to hide it. now i ust dont use it when they see. Not very wise. So i try to be more open. So if people ask question i mosly answer. But not always. I ust dont whant to defend my self, and this illnes is so hard to explain. This is one of the areaes i try to change, to find ways to deal whit it better. Find i way to make friends and inlaws to understand. But illnes is not an easy topic.

always blue under my eyes. the more they spread around and the darker they gett, well is one indicator for my close ones to know that i better ust sitt/lay still...=)

i know many pots people have to strugle whit being to hot . for me the cold have always been the worse.ofcourse hot summers days har hard for me, but we dont have to many really hot days. So i am greatfull for my heat blanket in bed etc etc.. And if i gett to cold, that is very bad pots wise..

hi.. my parter and me have diffrent standers.. His are way to low really, but since i can do so very litle i feel i cant complain. we have a washing lady every 14 days, she only do a few rooms, bathroom and the floors of the living,kithchen and bedroom. It cost a bit, but worth it. When i gett around to it my plan is to gett a privat person to do it, so the hole living floor will be cleaned. Now i have trhou the county, and they have very very strick and narrow rules of what they do. my boyfriend is gone a lot. And more often than not i have it cleaner when he is not here. i cant really do much, but i do what i can when i can. if only for a minute. it can take me a couple of days to emty the dishwasher etc etc. He makes bigg messes and preffer to push all houswork in front of him til it growe big big. That dont work for me. He hate house work, but i cant really say anything to him since i cant do much my self. But i figured out that i actually did more than him at times.. But hi is great at shopping all the croseries and making food. and that hi do very well. And i am very graetfull for it. and i try to rise his standers slightly. I dont need clean windows etc (as long as i can look out of my livivng room one ) But a bit cleaner kitschen and such could be nice. ust so one dont drown in the mess... ... But living whit cronic illnes also meen getting one head around life is well u cant always do thing the way one whant.. lowering my standers what a very very smart move for me. .. but lower than what they are now is not an option... and if u can affrod it, a cleaning lady can take the pressure of bigg time.. even when its a few floors only...

i am so feed up whit oo thats becuse of our syndrom, here they dont even use pots diagnose, because it doesnt exist.. And the docs har so happy that i have a syndrom they can blame everything one. But helping me finding out why (i am in my 30is and have it since litle girl), thats of no importanse. My life quality is of no importanse it seems.. I should ust be lucky to have some sort of diagnose... it can gett a bitt old, and very very frustrationg.. I think docs whit couriosity is very very fare between, and i have not incountered any yet. but e few nice one, i gess better then non. the nice ones u can force some sort of help out .. best of luck to u all

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

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.

hi.. I have dys/pots. And for the last couple of mnths i have gone to acu. I have tryed a lot of difrent alt,treatments during the years, like healing (from difrent people), homopathic stuff, cranio sarcal terapi etc etc etc. They only sort i have had some effect from is ostiopathi and acupuncture.. the acu i didnt notise much in the beginning. But my period is better. And my pain in lower stomac is generall lower now. My goal whit acu is pain controll, better sleep and a period that is not so hard. I am not all there yet, but the effect have been positiv enoufh to continue whit the treatment. last time i did gett the best effect pain wise. The time before, i got the worse effect. I think the treatment lowerd my bp etc, and my pots was worse for more than a couple of days. U are supposed to be tierd after the treatment and can feel bad the day of the treatment and maby the day after. last time i was very very tierd and pre magrain after the treatment. the day after was better (i had to take sleeping aids and strong pain killers the day of the treatment). and the days after that pain wise very nice. But not pain free. i will continoue going, and hope i will gett even better resoult. Ust keeping mey peroid in a better place i gess is worth it. Even thou it dificult getting there and back. If u try acu i would take my time to find a competent acu.terapist. And maby go very easy whit a few neddels in the begining ust to se how u react to them. i whanted to gett full value for my money (and a bitt impation), so as many needels she could use. I dont think that was the wises thing. last time she used fewer needels, and i got the best resoult actually. It migth ust be a coinsident, but.. Dont no if this reply is of any halp to u but... best of luck