New Here

[hlt4275]

Hi Everyone! I have recently been diagnosed with POTS, but have had progressing symptoms for years. I've read the board quite a bit and have found a lot of help and inspiration in everyone's posts! Thank you all!

I have a couple of questions that don't really have anything to do with treatment, just looking for some comfort I guess knowing that I'm not alone....maybe just an outlet of sorts.

1) I know that many of us hear "But you don't look sick!" I'm wondering, is there anyone else out there other than me that has gone to great lengths to make the world "see" a perfect picture, only to hide your dirty little secret at home? Outwardly I appear like any other mom, wife, etc., but what I don't let people see is that I come home from an outing and lay on the couch unable to do anything else, my house is always a pigsty even though I WANT a nice clean home, I sometimes have such bad days/weeks that I don't even answer the phone because I don't have the energy to talk, but then tell people that I "have been really busy" when they inquire why I haven't returned their call when really I've been home laying down. I really feel like a fraud sometimes, but I'm terrified to have people see how things really are.

2)And this is purely more for curiosity sake.... Does anyone else have problems both gaining and losing weight? While I'm not overweight, I have, in the past tried to shed a few pounds--it just doesn't happen no matter what I do diet-wise (I have even gone a week eating very little due to nausea, and not lost an ounce). The opposite is true too though...I can eat junk/whatever and not gain an ounce. Just wondering if it is connected to having tachy, or if this is purely my own body quirk.

I look forward to getting to know everyone!!!

[ladyt]

hi and welkcome....

I think most of us are sort of good actress/acters. I tried to hide from my self even. I do it still somewhat. i try not too. I am and have been fighting to be as healty as possible, i try not to waste to much energy on acting. But I think it somewhat hardwierd into many of us, me included.

I used to be very very skinny growin up, eating a lot, and then days i didn eat much at all. In my late 20 and now in my 30is I have gone up and down alot. And my heavyest is not nessersy when i am eating alot, often oppesit actually. I can gett to grow a size in ust a short time, like suddely looking pregant, or not getting my shoes on etc etc. My bra getting thigt, panths etc etc..

well sort of foggy my brain to day. But welkomme again. =)

[louloutinks]

Hi and welcome.

I get the opposite of losing weight then it goes back on then losing it etc etc for no reason - no change in diet. It drives me nuts and I have to keep all sizes of clothes handy!

I too hide from the phone - just do not want to speak and I say I have been busy. My house looks tidy on the surface most days but I just chuck everyhitng in cupboards etc so when you open thm they are in such a state lol Heck who cares!!

Washing up gets left for days until I need somehting or I feel better and my fingers are not working today buy the looks of my spelling but I'm sure you dont mind lol!

[HopeSprings]

Welcome! I don't discuss my situation with aquaintances, but when relationships get closer, I feel I have to let the person know that I am NOT OK. I have so many limitations -- it would become quite obvious that things are not quite right. I want the person to be aware of what the problem is, rather than think I am just weird! Most people don't get it or remember anyway, despite my efforts to explain it -- so I just give up. I have one friend whom I have known for 6 years -- I have explained to her on a number of occassions that I am sick, that I am dizzy all the time etc. and she keeps suggesting that once my 2 year old is in school I get a job. Hellllllooooo???? Other people in my life -- close family members I have told repeatedly that I am hypersensitive to perfumes, that once exposed I feel very sick-- do they remember not to wear it around me? --NOOO. So NO, I guess I am doing the opposite of trying to hide it. People are in their own little world -- I think we overestimate how much they think about us, so I guess it doesn't really matter whether we hide it or expose it 'cause they don't really care anyway! As far as trying to lose weight -- I have been trying to lose the same 5 lbs for like 2 years. I think I would have to eat close to nothing to make it happen. I don't think it's POTS related though -- I don't know your age, but for me I think it just gets harder to lose weight as I get older. Good luck with everything --hope you have a good Dr. to work with.

[Godsgal]

My health has dramatically changed so I have informed friends, family, and provided updates on facebook, etc. People need to know I'm not right. I can't just sit and have a jolly time baking myself at the beach or stand in line to order at Panera like I used to. I try to NEVER complain to anyone although I cheat a little on here

And I don't grieve or sit and ponder all the stuff I would like to do or eat. I love and appreciate my life and thank God for all of the wonderful things He has done for me.

I write notes on my FB page about my condition and try to educate people around me about it as much as possible. We all need to stop taking our lives for granted, and I used to also, and be thankful for what we have. I write on FB how vain I used to be and how silly I was to be worried about getting my hair done or the President interrupting my favorite tv show. That's just a waste of life and insulting to The Creator of it all. I have had tons of support from friends and family about my condition and that is great. The people around me legitimately want to understand me. I want to live authentically and be as genuine as possible about who I am. I am who I am. I can't hide what I have. It's all about balance. I don't go crazy with it either looking for attention or sympathy. I just educate about my condition and all the crazy weird things associated with it.....like noises and lights making my heart react. I want people to understand why I'm leaving church early or why I'm missing their kid's birthday party, or why I can't eat their super special homemade chocolate fudge cake that grandma passed down to them (and no, not even a bite). People get so offended and just to conclusions. That's why I communicate with people honestly about my situation and I don't get questioned or misunderstood TOO much although it does happen. And to those people, I give the benefit of the doubt and avoid being bitter. I mean really, who can understand this unless they have it themselves or are a doctor, and even that's not foolproof.

Love your self, sick and all, and genuinely discuss it when necessary.

[Chaos]

"Yes" to both of your questions. When people say "you look so good", my response is usually "well we all know that's all that matters. It's all about looks." And then I laugh and move on to another topic. Seriously, I work in a hospital and see a lot of VERY sick people and often the visitors who come to see them say the same thing to them. So, maybe it's just more of a cultural thing when people don't know what to say to you...kind of like talking about the weather. On the other hand, I've occasionally had people say "you don't look like you feel well today" when I actually felt relatively good and that was kind of discouraging too. Guess I'd rather hear I look good. (I may be sick but my VANITY is just fine- thank you very much.)lol

As for weight, I have the same issue. Up and down without much change to my diet. But NO change when I TRY to lose weight by increasing my exercise (to tolerance) and make a very conscious attempt to lose.

[mwise]

Welcome to the best forum!!!! I am like Godsgal, I try to educate people on my condition that I may look good on the outside, but my insides say differently:P I just want to be true to myself and others. I am thankful to be alive each day. I take it one day, one hour, one minute and one second at a time. I do a lot of praying and thank the good Lord for my life on this beautiful earth.

I do tell family, friends, co-workers and others when I am having a really bad day and when I am having a good day. It helps with love and support. To heck with the house and other daily activities. I do what I can when I am feeling good and when I am chair, couch or bed bound this is where family and friends pitch in and help me. I have become very humble and not afraid to ask for help. You would be surprised at how many people enjoy being helpful.

Again, welcome and a great big hug to you:lol:

[Noreen]

People are in their own little world -- I think we overestimate how much they think about us, so I guess it doesn't really matter whether we hide it or expose it 'cause they don't really care anyway!

that has been my experience, also

[Sarah4444]

I know exactly what you mean about the acting. Because this snuck up on me and I couldn't explain it, I just got really good at acting normal, to the point that I was even fooling myself. I blamed my symptoms on other things, like pain, and it wasn't until I literally could not stand up that I was forced to look at things again. It has helped me to be able to name things, but like many other posters here, I think I expected others to care and understand more than they do. I am lucky with people close to me that I can be honest and get support, but in the outside world, I am back to acting again - it's like a habit I can't break. It's hard on my kids, because they get to see the real me, who can barely move after going out for a short time.

I have also had the weight things you mention - for 20 years I would stay 130 lbs no matter how much I ate. Then I suddenly gained 30 lbs (and started to get migraines and had galactorrhea). I was diagnosed with a pituitary microadenoma. Since then my weight fluctuated but stayed high while I was really sick, and now seems "stuck" again around 160, even when I can barely eat or manage to exercise. I think that before, I was burning lots of calories just trying to stand up and function with POTS, but now I feel like my metabolism has been highjacked and is unfamiliar to me.

[songcanary]

I had symptoms for three years before getting diagnosed so I became very good at hiding my problem. But finally I was too ill to continue working and I was forced to call my clients and tell them that I could no longer help them. It killed me. But then something strange and wonderful happened. I got flowers, I got phone calls, I got cards. I am working for the most wonderful, understanding people in the world. After I finally got diagnosed I stayed off work for another six months so I could evaluate my treatment. I have just recently started working again and I hope I am able to continue. What I learned is that it was a tremendous relief to finally let the cat out of the bag. And to find out that people really do want to help if they can. It is not such a bad thing to ask for support, it makes us human. I mean, if someone else had this condition I would be the first one to offer help and I have done it many times in the past. So don't be afraid to air the laundry, it might even have unexpected benefits.

[Tia Koul]

Hi and welcome!! I am 41 and have been ill since I was a young child. I used to lie to everyone and hide out. I think it's a natural desire to conceal what you are going through especially when so few understand. When I finally got diagnosed in my 30's I started telling people. But mostly in the last few years I have no problem telling anyone that I have chronic health issues. I no longer schedule any morning appointments, and if they ask I tell them I have a sleep disorder and will not ruin my day to wake up for an appointment. In fact, I am now adimant about pacing myself and sticking to a comfortable schedule. I miss family events, weddings, any morning activities (which is ok by me!), and pretty much anything that I think may throw me off. I refuse to feel shame about any of this. I am very forthright now and it feels pretty good. One of my vets wanted to schedule and early appointment and I told her I never do mornings due to the sleep issue, and she was shocked. She too has major sleep problems, but always lied about it. She was liberated. I told her in no way does anyone have to be ashamed. And I will never again put myself in harms way and suffer for someone else. I have lost friends over this, but there is nothing I can do about it. And that's ok. I do what I am able to do, take it slow, rest a lot, as possible, and I am much healthier because of it. Oh, my house is a mess too. It's pretty shocking. yea, a maid would be nice!!! lol. Oh well! My friends know so I really can't get nuts about it anymore. It is what it is. But I am much happier being honest about it, and living more comfortbaly for it. It is WAY easier for me this way! I need to be happy and feel as good as I possibly can. I hope you can feel the same way. Nurture yourself and do what you are comfortable doing when possible. Anyhow, if your friends know the truth, then you wont have to feel ashamed if they pop over and see your house. And they will understand when you don't pick up the phone. It may take some pressure off of you Good luck and feel good!!!

[hlt4275]

Thank you everyone for the warm welcome, words of wisdom, and comfort. I will definitely take everyone's advice and stop the acting madness! I owe it to myself and my family to be real, but it is nice to know that I am not the only one who has put on appearances.

To answer a question that was posed, I am 35 (almost 36) years old. I should have added that to my intro.

As for those who spoke of typos...yes, I completely understand! As I looked at the description of my post it was meant to say "introduction" not "introducation." LOL Sometimes my brain takes a vacation, and my fingers do their own thing.

I'm looking forward to getting to know everyone! Thanks again for making me feel so welcome!

[lissy]

WELCOME:)

Yes I hear I look fine and many times I say OH REALLY!

I use to try to explain my condition to everyone and figured out they could care less so I quit and say I'm just fine...

I have no prob losing weight I have trouble gaining cause I barely eat:P....anxiety attacks ???

With the constant brain fog I really don't have to play an actress role most of the time everything around me seems unrealisitic (like a movie and I'm in the way)

Anyway its a great site with lots of ppl who have alot of knowledge and caring spirits, make yourself at home;)

Lissy