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About Evie

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  1. I find myself gasping at night and being woken up by it ... Apart from that the stranges thing i find is a sudden pain in my chest ... like all the muscles have tightend and its suddenly hard to breath .. its kind of like a choking feeling in the upper section of my chest. I have found massaging knots out from between the ribs can really help this (but i usually need a actual massage therapist to do this and while some can manage it many have no idea how to do it). I suppose those symptoms are not really related to yours ... sorry Check with the dr that you dont have asthma or something like that (my great advice!) Hope you find an answer
  2. Yes they have been big in Australia for quite some time... i think they were in a rock band called the cocoroaches or something before they were the wiggles Yeh i realise it could be many things, i just thought since he would have top dr's they would have picked up most of the common illnesses by now. Maybe i am wrong... time shall tell i suppose.
  3. I dont know if the wiggles are known in america or not but they are a childrens band who is quite famous in australia. One of them has had to stop touring as he has a 'mystery illness', and i thought it sounded quite a lot like POTS or CFS. I hope for his sake they find out its something more treatable but maybe there will be a famous person with POTS after all! http://news.ninemsn.com.au/article.aspx?id=61825 Yellow Wiggle out indefinitely Wednesday Nov 1 18:48 AEDT Yellow Wiggle Greg Page will be out of action indefinitely, as the children's entertainer continues to undergo tests for a mystery illness. Page, 34, has been undergoing medical examinations since June, when he pulled out of the group's tour of the US after experiencing symptoms such as fainting and lethargy. With Page still sick and the group touring the United States again, he has been replaced by understudy Sam Moran. "It is not something that we can put a time limit on. "Tests are ongoing but they have been for a while and we have to just be patient and wait until they find the root cause of these episodes." Mr Field said Page was simply not fit enough to perform the rigorous routines required for a Wiggles stage show. "It is a pretty full-on workout, the Wiggles shows. You need to be 100 per cent fit and he's not," said Field "Greg's condition is that he is fairly tired and he's had some fainting episodes. He's able to walk around and do stuff but he's literally not fit enough to tour." Following the US tour, the Wiggles will conduct a tour of Australia with their Race To The Rainbow stage show. The Wiggles formed 15 years ago and have won countless awards in Australia and overseas.
  4. Thanks so much for all your sweet responses! My major is American history and i am about to go on exchange to boston college. I sort of threw myself in the deep end when applying as i had to start the application a year ago and i was not really certain if i would actaully be able to go through with it. I had a crash in jan that lasted a month but since then i have been quite strong. Although since i finished 3 days ago i have crashed a little but i think that even healthy people do that after exams? Lauren and Angela, believe me there were many tears along the way but hopefully in time you can do it. I had almost got to the stage where i did not want to try full time anymore as i didnt think i could handle the heartbreak of having to drop out again, thank goodness i 'felt the fear and did it anyway'. Its so tough to know when to be 'sensible' and when to push, and i wish i could give advice on how to help recovery but i have come to the conclusion its basically luck, or at least things that are tough for us to control. I wish you both the best and hope that you are able to do it too someday (although with this condition i realise one semester does not mean forever ... i am quite scared i will have a bad turn.. but i suppose thats a fear we all have to deal with that from time to time). Nadine i also wish the best to your daughter, supportive parents help SO SO much so its wonderful you are on a forum for her. When i had to drop out of high school my parents were understanding but i cant get over how many parents just could not understand... turns out it was one of the best things i ever did and i got where i want to go anyway (maybe a few more tears and less parties along the way). I hope your daughter gets where she wants to be eventually and my heart goes out to her during the horrible uncertain period when your half there but still no where close to being 'normal'. (i hope that makes sense.. i just woke up)
  5. I am so excited... i have tried at least 4 times to manage full time study and each time i had to drop out from not been able to handle it. However, i finally managed it! I know people sometimes feel that there is no much news of recovery on this forum as many times once people recover they dont vist anymore. So while i would not say i have completely recoverd i would say i have made vast improvements. I Just wanted to share the good news with people who know how much these little steps forward can mean It was devestating when i use to try to manage full time but had to drop out, it is so disheartening and upsetting and it happend year after year.. but there is hope! Good luck to those who are attempting to regain 'normal' activity levels, my thoughts are with you all Now i have to see if i can do another semester full time while overseas ... eeek! It was a dream for so long and due to illness appeard it would remain a dream. I cant believe i am actually going to attempt it at long last.
  6. I will be living in New England (boston) the second half of this year (aug 16-dec 25) so if you do it some time then let me know and i may be able to make it to NY one weekend. As i am from Australia i have no idea of the logistics though eek.
  7. If i am held upright when i faint i have fit like shakes and my head rolls down and stuff ... i dont know about permanent damage but it is a horrible feeling. Ask your doc. Just explain the the portor how thankful you are that he helped you (get him at ease) then just mention in the future its best if you lay down strait away if you faint. Have they still got you living upstairs after all this? Hope you feel better soon xo
  8. This use to happen to me too .... then over time i can drink again .. sometimes it helps me as it takes away body pain and makes movement much easier ... other times i just fall asleep like you mention .. its annoyingly hit and miss
  9. I get this too. I found the lower the room temp the better for me. (unfortunately this makes everyone else freeze in my house)
  10. I am so happy for you! It is really exciting when you feel yourself comming out of the hole... Who did you explain your difficulties to? are they doing anything to support you now? Let us know how it all goes
  11. Yeh, that is such wonderful news! Let us know how your weekend goes
  12. ok thanks, great to know. I hope you are able to get a single and a car space! best of luck
  13. Kate i hope you find a way to continue your music. We loose so much when we lose our health let alone losing our passions too. I have heard singing can be bad for people with POTs but what is the issue with piano? (i realise some people find concentrating, coordinating, sitting and moving tough) Maybe we can work out a way around them! Amy, can you bowl using a metal incline? i have no idea of the correct name for it but here we have like a metal slide that you put the ball on the top of and then it rolls down and then down the ally. I realise it would not be the same but maybe you could still get a bit of the feeling. I use to love skiiing but now i shake so much i cant control myself and i tire quickly so i have to stay on the beginners slopes which is sad when i know i use to do jumps and black diamond runs. However i have to admit the first time i was able to ski again i was SO excited. mixed feelings indeed.
  14. Oh yeh i did not think of bunk beds! I dont think they use them but i will definately check. I was going to apply to georgetown but they only accepted third years and i am in the second half of my second year. What a shame we could have hung out heh. I will get my disabilities office to contact thiers... thats all sorted. I dont think i am bad enough to be seeking them to supply me with benches or in room aircon and as i am not paying fees to attend i think i may be asking a bit much. I will definately ask about air conditioning, no bunk beds, less stairs if possible and single if possible. Thanks so much for your advice! It really did help alot. If anyone else has any more suggestions let me know Gah my dad keeps making jokes about how me asking for a non enclosed bathroom is like my eccentric aunt wanting a house with a big laundery. Obviously he has never shared a shower with me so i guess he wouldnt understand how it can effect me when weak. I just wish he didnt have to joke about it and make me feel like i am asking for utterly petty things.
  15. haha spooky i just rememberd about A/c and was about to post about it. I am going to Boston for fall semester so will it be very hot at the beginning of fall? I have read that all freshman dorms dont have a/c but it did not mentioned the rest of the dorms. I live in australia so air con saves me! Thats a good idea about a single room. I guess i dont want to be anti social but it may put out a roommate if i did happen to get sick. I try really hard not to nap in the day but i do find i sleep in when i am weak (although dont most college students sleep in anyway? heh). I guess i could say its not a nessecity but may be better for my roommates sake. Thanks so much for replying ... i need to write them a response soon so dont want to forget anything and appear all nitpicky later if i keep adding things. No thank you it was of great help melissa! I have not ever lived on campus before so i really am not too sure what to expect (although i am assuming its kind of similar to boarding but it also has boys hah). I am pretty ok most of the time these days... i can do stairs ok and everything, i am just preparing for worst case senario i suppose. As you all know, when your health does mess up the little things really add up. As i have never been there and can only look online i am not certain about types of housing, although i understand its very mixed. Singles, 2s and 3 per room plus some apartments. I think there is a shortage for students so i guess i should be grateful that i can get on campus at all.
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