Evie

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

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.

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 With Page still sick and the group touring the United States again, he has been replaced by understudy Sam Moran.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.

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)

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.

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.

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

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

I get this too. I found the lower the room temp the better for me. (unfortunately this makes everyone else freeze in my house)

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

Yeh, that is such wonderful news! Let us know how your weekend goes

ok thanks, great to know. I hope you are able to get a single and a car space! best of luck

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.

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.

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.

Hun you are accomplished as a human being as from this experience you would have learnt so much! however i realise this does not always seem relevent to the outside world. I had to leave high school too, and i use to be kind of ashamed of it as it felt like all my friends were off doing exciting things and i was struggeling to just get outside the house. I guess you cant compare yourself to 'normal' people and in truth the fact that you managed to get your GED is a HUGE accomplishment! Like others have said those sorts of sites only state the kind of lives that people want you to know about, they dont mention the amount of debt or jobs people got fired from etc. Your true friends will respect your accomplishments and know how hard you worked for them and there is always us here who are completely proud of your achievements and in no way will ever try to diminish them! I think we all struggle with this concept of 'lack of achievement' from time to time. You have brough up a great point. I personally hate that i have to lie or embellish on my resume as i have 0 work experience and the volunteer stuff i was able to do was before i got sick. I was applying for exchange and actually lost my first preference as the interview kept comming back to my health and as a result my lack of 'independence and life experience'. I cried after the interview. So here i am being all oh its not so bad but in reality i realise how hurtfull and depressing it can seem. You are not alone xo Ps: by some twist of fate i actually am really happy i missed my first preference now.

Hi Kate, It can be unsettling at first not knowing how your body will react. Try not to get too emotionally worried about it as sometimes that can actually trigger a physcial response. When i fly i always take drinks like powerade and salty food like crackers or potato chips. Just be aware that your body may take a few days to recover so you may be more dizzy than usual for the first day or so after arriving so dont freak out it most likely will pass ps: massage does wonders for me as it gets my blood flowing again and helps my body recover from the flight

Those symptoms sound like me when i was really bad with CFS. Most of them continued for a few years excpet thankfully i could move out of bed to the bathroom without extreme effort after the first 4months or so. I think you did a good job of explaining them Although i guess i am biased from personaly experiencing similar. good luck! xo

Hi Everyone, As i have mentioned before i am giong on exchange for the Fall 2006 semester. Although its rare that exchange students get on campus housing the college is allowing me to stay on campus due to my health situation. They have asked me what accomidations i may need. I am lucky that lately most days i am pretty good and my blood pressure is under control at the moment (have not fainted in at least 3 months and am physically MUCH stronger) but i suppose i should prepare just in case something triggers it to return. So far I think i will ask for only one or two flights of stairs or an elevator. That makes sense to people. However i admit i am a little worried about the bathroom/showers and steam as when i have showers i have the door or curtin open so the steam does not cause my bp to drop. Obviously i wont shower in public bathrooms with the door open so how would i best explain through email a non steamy bathroom? It sounds like such a eccentric request! My parents are saying not to ask for them as it sounds like i would be too much trouble or a risk. I am not sure that they fully understand how much steam can effect me, i guess you guys understand. Is this a stupid fussy request? I guess i can just rinse myself without using much hot water but the hot water really helps my sore muscles which makes getting around each day much easier. I feel like family/friends think i am a bit demanding here and being inflexable but it actually does impact on my ability to function 'normaly'. I realise i could get a chair but that does not stop the nasesea *VENTING* heh. When i was at boarding school we had really high celings so the steam was no problem as it had room to move outside the actual cubicle (that was before i had POTS though but i know that that kind of public bathroom would be fine). I suppose i just need to know that it has ventilation or windows? If anyone could advise me on a good way to word that i would really appreciate it! Is there a special american lingo to explain it? Or should i just scratch the question altogether. Can anyone think of other things i may need to request? thanks so much

yay thats HUGE! Its a big effort for those who are healthy and double the effort for us who are not... I am so happy for you! What are you going to do to celebrate? What is your next move? (ok i should let you celebrate some more before you have to face that question shouldnt i? hehe)

Im so sorry that people close to you are saying such hurtful things! it truely is heart breaking. I have noticed that now i am able to go to university and am happier (as i am not in as much physical pain) people tend to say mean things less. When i was stuck at home for months on end i use to sit on my computer as it was a way for me to communicate with friends without having to physcially move, i overheard my dad say to my mum who i was turning into a loser. That was possibly the most hurtful thing i have had said to me in my life. I could not understand how someone who had seen me fight for years to be able to study and be 'normal' could actually put the blame on to me and say such a cruel thing. Loved ones are strange in longterm uncertain circumstance and unforunately they are the ones who are best able to rip into our heart. I cannot imagine the pain of being so severley impaird for such a long period of time. I think its amazing that you have not given up already! despite what people may put on us, i think those who suffer handicaps are some of the toughest people around. xoxox

Hi, Originally i moved from full time school to part time college (eqivilent to community college) and took one term on one term off (gosh that took forever). Now i am at university and have done part time for the past year and a half and this semester is the first time i have done full time study (although i have tried many times before). Can you try part time to see how it goes for you? I have notetakers and computers in exams. I also get extentions sometimes when my health gets really bad. This is through my disabiltiy unit. Get all the help you can!

It is funny you say that as i use to try to help anyone and everyone but overtime with this illness i became more selfish. I help my friends but would not go out of my way otherwise. Only recently have i had the energy to reach out to strangers again. I hope your energy returns so you are able to do this without suffering for it. Unfortunately helping people can be quite a drain!

I have given up trying to work out how this illness works ... sometimes i do more and feel great because of it sometimes i do more and suffer for a month after. Now i just take it hour by hour and if i feel shakey i dont push it. I just make sure that i dont have too much planned for any one week or weekend so then i can do what i am supposed to do (or postpone things rarely) and rest if i need to. It can be annoying as i think due to my limiting my activites i may actually achieve less than i am really capable of but i know when i really push it i can really pay for it. It is mighty frustrating. In years past i use to go out twice a week but the whole time i was in pain. I would appear normal to the outside world and people would kind of comment that i was not at school but i could still go out and see my friends but emotionally i HAD to, i was so depressed being stuck at home and not seeing anyone my own age (friends lived over a hour away and i am a only child). Emotionally i think sometimes you need to push it, i am glad my mother understood that, my father found it a little tougher to understand (he thought if i could go to the movies i could go to school).

yeh melatonin makes me feel sick. Not strait away but if i use it for a few nights in a row it does.... but by all means try it and see how it makes you feel