becky

Hi Kate, I love singing, i didn't realise pots would affect it until i passed out at kareoke last year!! hmmm, hardly my best performance. the bloke who was the compere at the kareoke (one of my mum and dad's friends) was not impressed cos he thought i'd broken his microphone, i love people who have their priorites in order! i have been quite a lot better recently so i have been doing some singing but it took me over a year to get back up their and do it, and it's a lot harder than it used to be, i get really breathless and my heart goes mad which sometimes causes me chest pains and sometimes doesn't, luck of the draw. but hey, it may not have been my best performance but it was certainly the most memorable and if i goto kareoke now everyone shuts up and watches, i know it's cos they are waiting for me to hit the deck, but not to worry i feel like a star!! At the end of the day you can only do as much a your body allows you to, having been singing for so long any breathing tips? good luck singing and playing becks x x x

hiya, i know exactly how you feel and i agree with everyone on here, you are doing great getting out of bed every day! i sometimes feel so left behind when i see people from school and they have their degrees and their good jobs, and you all know, invisible disability everyone looks at me like i'm just lazy and i can't be bothered to get a job, if only they knew the struggle i have getting up in the morning, i find it so difficult to wake up and i have to have naps and i'm feeling the best i have in years!!! Don't worry about education and jobs though, you are still young and you sound very determined so i'm sure you'll work as hard as your body will allow to get what you want (ask persepherone, she is my biggest inspiration!) last year i went back to a training school and took three months to do an i.t qualification i was so proud of myself and then i had another dip and got sick again, but when i feel down i look at my certificate,you should do that with your high school certificate. Good luck with everything you take on. love and hugs becks x x x

AARRGH, i hate spoiled people!! i know what you mean about friends who have everything and still moan. i admit that i am quite spoiled myself, in that i'm really lucky with my parents that they do help me out, but i don't ask for their help and i don't expect it, i am so grateful to them, they took me in when my relationship failed and decorated my old room so i'd feel comfortable there. they are wonderful parents and they look after me really well. Anyway, sorry went off on a tangent, waiting for disability descion is horrid. i live in the uk and i now have disability living allowance and incapacity benefit, the DLA is for ten years that gets paid no matter what but the incapacity benefit gets renewed every year. i had to fill in the new forms a couple of months ago and then i had to have a medical assesment, i'm not good with paperwork! so anyway i had the assesment and had to wait three weeks for the descision, which felt like three years! i've been so much better recently and i had hoped that it would say that i had passed and i could go back to work but they said that i failed and so i'm still not working. but i figure this just gives me time to find out exactly what i want to do. i know i'm not ready for work yet, i am still sleeping fourteen hours a night and then i need a nap, hmm can't see an office that'll let me dribble on the keyboard whilst i have a nap!! good luck with your decision and don't let your friend get you down, she probably doesn't even realise that she is so spoiled, they kind of get used to it. becks x x x

Oh my god! congratulations!!! Will you let me know how you get on being pregnant? my boyfriend and i have been discussing children as i really want kids, at the moment though he says that he wouldn't have a child with me because he doesn't think i'll be able to cope because i sleep so much at the moment and i'm always tired and i don't have a job. This upset me because i am soo much better than i was last year, like i've had over a month without a collapse!! so please let me know how you get on, i am so broody at the moment! luv becks x x x

I've got my ICE numbers in, so have the rest of my family, same as perse, after the july bombings my mum made me and my sister put them in our phones just in case. becks x x x

Hi, i'm not allowed to drive at all, i was in the middle of sitting my tests when i first got ill, back in 2002 and the first doctor i saw told me no more driving!! so now i'm doing a bit better but i have to have six months without a collapse before i'm allowed to drive again. oh well, one down five to go!! hope everyone is ok becks x x x

thanks everyone, yeah i do think i have a broken heart, but i do react really badly to emotions, i passed out when i was jhaving an argument with someone and i passedout when i heard that we had our house. i just think that all of the emotions on top on my pots isn't helping. and now cos i've moved i have to change my docs again, you all know how difficult it is to find a new doctor who understands pots, i already had to change docs once this year cos my doctor told me to be more careful when i pass out! anyway, think i might go eat my own weight in ice cream, that'll make me feel better! becks x x x

hi all, erm, has anyone else had it when they cry that your heart races and your heart hurts, like spasms not like palps? i split up with my fiancee last week and have moved back in with my parents (not only upsetting but very stressful) i've been quite well recently but now i feel awful, my chest hurts really badlyand no matter how much i try to drink i'm still dehydrated. My doctor say's that this is part of having depression and that it is anxiety attacks, but i know my body and when i'm anxious i get stomach problems. Anyone got any ideas? i'm just trying to let myself get used to the situation, me and adam were together for five years and lived together for three, even though it was my decision it really hurts. thanks for reading. becks x x x

HI Zoe, ican't even begin to imagine how heartbreaking this is for you but you made the right decision with all of the information that you had. it's ok to still grieve (sp?) we're all here for you, if you need to talk give me a call. lots of love and big hugs becks x x x

hi love, so proud of you yesterday, well done!! ok so now you are feeling not good, so rest up! if you aren't too bothered about this meal tonight, don't go, just let your body get a bit of rest, you did a **** of a lot yesterday and without any of your aids. I just wanted to post that i think you are doing fantastically and after seeing that photo of the library yesterday i can so understand you being there. (did that make any sense?) Anyway love, i'm not making much sense today (a little dizzy), have a good nights sleep tonight and then tomorrow you'll be able to get lots of work done! lots of love and big hugs becky x x x

Hi kim, welcome to the forum, i'm sorry that you are so ill but glad that you have found this forum with lots of people just like you. i have the same kind of problems with vertigo, i'm being referred to a ear nose and throat specialist but i'm not sure it's my ears - anyway sorry going off track. If you don't feel safe enough to drive, if it's causing you to be dizzy or anxiety attacks then you shouldn't do it, is there anyone else who can take your kids to school? I'm not allowed to drive because of my condition, i have to go six months without passing out before i can drive again. Don't let people who say you should go back to work bug you, they don't know what's going on in your body, this unfortunately is like an invisable disability, unless you are white as a ghost people can't tell that you are ill. hope that's some help anyway! lots of love and hugs becks x x x

Hi Sue, i don't have EDS but i am from the u.k! i have similar bp and pulse problems, chest pain palps etc. i'm 24 as well and i think that hormones must have something to do with our illnesses cos i get much much worse around period time, even on medication. Hope you are feeling well at the moment though. big hugs becks x x x

Howdy, my cardio told me to get the flu shot as he said it couldn't do any harm and i would feel a little rough for a few days so i had it about a month ago and i've been ok ish! i had the normal sore arm but i've had kind of flu like symptoms and complete exhaustion since, been sleeping soo much more, i think next time i'll do more research! becks x x x

Hi, we don't have thanksgiving in the uk but i like the thought of being thankful for things so here goes, 1) this forum, saved my life when i found it. 2) Persephone, my first potsy friend, acest person to talk to when i'm feeling down, and possibly the only person i know who swears as much as me! 3) my wonderful family, even if they do annoy me at times, they are always there for me no matter what. 4) Brad Pitt, hey a girl can dream! 5) Ben and Jerry's ice cream! 6) finally my wonderful gorgeous cardiologist, thanks to him i know i'm not mad! And probably a billion more little things that make me happy, like the weather at the moment, it looks like it's going to snow, and i love snow! becks x x x

Hi Daniel, I agree with everyoe else that you sound like a good person with a conscience (sp?) for you to post what really happened to you, and i agree with pers nothing better than a man in akilt who doesn't have to resort to violence to solve things. Good luck in court, i know it can be scary, i was in court a couple of weeks ago in a disability case and even though i wasn't on trial or anything i was terrified!! If the judge has any sense they'll throw the case out, or at least take into consideration all that you went through. we are all thinking of you. good luck, chill out (well, try) big hugs becks x x x

Hey Katie, i knit too, got a really ace scarf that i made last year, it's over six foot long! now that my case is over i'm going back to college to do my NVQ in I.T. and generally try to get more active. in the house i love cooking hate cleaning and will watch paint dry if it means i don't have to move sometimes! Baby boy, i'm doing my course at a training centre for older unemployed people, have you thought about trying something like that? i know when i used to suffer from anxiety the more i stayed in the worse it got. phone your local job centre then you can get the qualification (possibly even online through learn direct?)and work from home on web design. need any help with who to call etc PM me ok? Becks x x x

Hi Pam, i don't have asthma so i can't really help you wioth that but sorry to hear you've got broncitis, get well soon love, that's not very nice illness. about the bit at the bottom if you go to my Controls at the top of the page you can add a signature there. hope that helps love becky x x x

Hi all, First of all, thank you so much for all of the lovely replies and encouraging words, i thought of all of you yesterday as my lawyer and i (i gave him the questions!) cross examined my ex employers, i couldn't believe that they both got up on the stand took the oath and then lied. Luckily for me in tribunals there are also three judges who can stop you and ask you questions at any time and they pulled their statements to pieces. Needless to say at the end of yesterday afternoon i won my case for disability discrimination and was awarded ?4000 for my hurt feelings, i know that the money isn't a great deal but i was completely honest with the judges and explained that i have now picked my life back up from out of the gutter even though i'm still not well enough for work yet, but the fact that i won and can tell people that means so much more to me than any amount of money. My ex employers had not heard of the Disability Discrimination Act and even though they are quite a big company they did not know anything about employment tribunals, i researched them before i decided that i was going to for it, as you lot know taking on something like this is huge with our restrictions. After the verdict my ex employers left the court very quickly without even looking at me but their lawyer said good luck with the future well done and shook my hand. i think even he believed me more than his client! Sorry i've gone on for so long but i am absolutely over the moon at the moment, i've waited for this for a year and a half and i finally did it. Thanks again for all your support, i'm hoping that now i will be able to get some publicity about this and show more people over here about our condition and the Disibility Act. Lots of big hugs to everyone and loads of sloppy kisses! love becky x x x

hi all, thanks for the really encouraging words, today was quite hellish. i had to go first and i wasn't prepared for that, but i just kept calm read my statement and explained to the judges everything that happened during my employment, i had to ask for a couple of unschelduled (sp?) breaks as i kind of started to slur - a sure sign i'm going down hill and my sentences weren't making sense! anyway i could see my dad and my fiancee waving to me to stop so i asked for a break and the court were really nice. The opposing lawyer was really tough and kept on saying that i was lying and trying to make me sound less credible but i kept to my guns didn't get upset and more importantly didn't get angry at the short bald man!! Anyway, apparently tomorrow will be easier as it's their turn and i don't have to speak but i think thats just as bad. right i now have a banging headache as i have only just got home and i left this morning at seven, so i'm going to bed. Bring on round two!! lots of love and hugs (especially to pers, thanks mate) becks x x x

HI all, sorry i haven't been posting much recently but i am going to court tomorrow against my ex employer for disability discrimination for sacking me whilst i was ill and not making any adjustments. I will admit that i am absolutely terrified, i have to get up and speak, i'm scared i'll pass out and then i'll never be able to tell everyone what they did to me. I'm not sure what's worse though all of the letters that i have from them and my doctors telling me that i'm stressed and not fit for work or the fact that all of the people that are there tomorrow have seen all of my medical records dating back to when i was born, there is some really private stuff in there about the counselling that i received a few years ago for depression and all of the tests that i have had to go through to finally get to a diagnosis - i have to say that at the weekend i just thought, i can't do this, i was so upset by all of the things that i had read and i did not want my private life dragged through the courts and made public knowledge, but then i thought about how i don't have anything to hide from them and there are so many people out there who are discriminated against and don't do anything about it because they are sick, so i decided that i'm going to be strong and stand up and say that's not right, i may be sick but i've still got a voice and i'm going to use it. please wish me luck, and keep me in your thoughts, and thanks for all the help over the past few months. sorry this was a bit longer than originally planned. i'll keep you all updated, should be all over by thursday. big hugs and lots of love becks x x x

hiya, i'm in the uk, i'm from chester. feel free to email me if you need anything. becks x x x

hey dizzygirl, i have the same type of problem with my period but only this past year before that i was on the pill and then the depo provera injection (that made me soo ill) but now my periods are so irregular and heavy and last for weeks, i've been on my period now for the past ten days and i'm hoping it stops soon cos i feel like ****! docs w2on't put me on the pill because i take florinef and they are worried about side effects and cardio says that i have to wait until the next round of tests on my adrenal glands, but i've had my hormones tested and they are all fine, hope you get further with your docs crampygrumpybecks x x

congratulations ling thats wonderful news, please keep us posted on how you are doing, my fiancee and i would love children one day and i'd love to know how pots people do pregnancy. big hugs becks x x x

hi morgan's husband, please tell morgan to get better soon, and that i hope that she gets lots of rest and starts to feel more like herself. i have had similar paralysis attacks all thru last year i couldn't speak but i could hear and it scared the life out of me, it used to take me about an hour to come round. i'm really glad that morgan has such a supportive husband and family to help her thru this difficult time. please tell her that we love her very much and send her big hugs and we look forward to hearing from her soon, i know that thru some of my deepest pots holes reading some of morgans posts have really cheered me up and made me feel a lot better, i hope that we can do that for her now. lots of love and big hugs becks x x x

hi, i love this thread. i am at college part time at the moment studying nvq in i.t. just finiished my ecdl, i'm hoping to set up some kind of charity with my new found i.t skills although i'm still finding it quite difficult to get to college everyday. i love knitting, i took it up last year after i lost my job as i could only really move my hands without getting too tired. in my previous life i was an admin assistant, which is kind of one of the reasons i found out i had pots, my office was always too hot (in the 30's) and i'd regularly headbutt the computer or fall off my chair whilst eating lunch i don't think i could go back to another office job yet even after a year and a half that company scarred me! hopefully when i get a bit better i'm going to set up a group for teenagers with mental health problems, just make sure none of them have germs! becks x x x