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Okay, so i was just talking to a guy i work with and i dont even know how we got on the topic....we started talking about "the eyes being the window of the soul" and how you can tell a lot about someone just from looking at their eyes....so i was joking around with him, asking him what he saw in my eyes or what he percieved my overall "being" to be like..............he hit everything on the mark but then he started talking about "my condition" and how i'm actually a little obsessed with it????? i was kinda mad that he said that, i didnt tell him that, but seriously, when something pretty much dominates a huge aspect of LIFE and how you would ultimately live your life, i'm sorry but one of the top things on your list is to find ways/ideas to get AROUND what it is that almost seemingly controls you or to find better answers/treatments to work around it....??? i cant help it that i talk about it probably more than i should because i probably WORK more than i should and do MORE things than i probably should, and then pay for it at the end of the day == and the people i work with have the honor of being around me AT the END of the day.....

just makes me mad that he thinks i'm "obsessed" with it, like i'm some full blown hypochondriac or something?? i personally am not concerned with death and would could potentially kill me, we're all going to die some day, and i know that THAT is the hypochondriac's mentality, that they are scared they have something that will "do them in".........and likewise are probably OBSESSED with those thoughts.....i'd hate to be categorized like that in the minds of people because I AM FAR FROM THAT, but I DO have to live with a debilitating condition, SO IT IS on my mind a lot, because i have to change my life around, to MODIFY my daily activites/plans/schedule FOR IT...

also, i think i have a whole TWO TIMES actually gone into our E.R. over the past three years i have worked at the hospital i'm at for help for symptoms....i dont think THAT is being obsessed!??

anyone been told they are "obsessed" with "their condition"?? argh! :)

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Guest tearose

I feel your frustration. Especially after you were having a friendly conversation and were enjoying the friendly banter.

I recently had a conversation with a cardiologist who upon seeing my new heart rate monitor on my wrist remarked "oh, now you are going to become fixed on your heart rate".

I was so frustrated to hear him say this! I said, I use to wear a heart rate monitor every day all day, except for sleep and it was SO FREEING!!! I never thought about my heart then. If my rate went over 145 it beeped and I would sit down. If it beeped below 40, I stood up! It was a great "learning tool" and it NEVER produced anxiety!!! I was just told by an EP cardiologist to start wearing the heartrate monitor again. Finally, after I went through this long explanation, I said "you have got to understand, this is freeing not anxiety producing....do you realize this???" He finally said, "oh, alright then, it may be good to see what is happening...can you download the information to a PC? Maybe we can understand what is happening then." After all that he saw the value...it was tiring and the challenge to my self understanding was not needed. I hate it when people make us feel like we are adding to our problems or focused on them too much!!!!!!!

I get sooo upset that the first thing some "small minded" / " anally-analytical" people assume is that we have nothing better to do with our time than to worry about ourself!!

Let this ordeal go and chalk it up to another person who thinks they "have the answer". Like we can just "will ourselves well" and that if we only calmed down or meditated or exercised a little more....blah blah blah!....gosh, I really got upset for you! Can you tell it pressed a button of mine!!!!

Anyway, you are doing the best you can. Also, don't share with these kinds of people anymore.

take care,

tearose

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That is frustrating. I can certainly tell from your posts that you are dealing with your condition as rationally as the most normal, rational person I can imagine. As you say, obviously when something daily intrudes in your life and sense of well-being it is going to be on your mind, as you work to manage it, physically and emotionally.

I think with this condition, or any condition that can be so disabling--and on top of that, mysterious--it can challenge even the healthiest of minds.

My ob/gyn told me I was obsessed. This was prior to diagnosis when I had so many symptoms and high heart rates and bp all over the place. I would check my hr and bp and bring the readings in. My husband tells me at times that I am obsessed. Well, when I feel horrible and it comes on so randomly and have days where nothing I know to do works, it is distressing. People who have never experienced chronic, disabling illness truly do not understand, unfortunately, how it pervades our lives.

That said, there are things that have helped me to some extent, such as meditation, yoga, breathing exercises. But some days that only helps so much.

Like tearose said, this may be someone you just can't share your experience with.

Katherine

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Hi friends,

Some things cannot be ignored. They are hard-wired into our nervous systems. One is the heartbeat. Last year my therapist tried to say something about perhaps my being fixated, and so I explained it by using an analogy. (I had thought a lot about this from the comments of other people.)

I asked her if she ever had an bad itch and tried to ignore it. It almost gets more of your attention until you finally scratch it. (Itches disperse toxins so the bloodstream can move them out and therefore they perform a function.)

I asked her if her eye ever twitched when she was tired and if she could ever just decide not to be aware of it. Or had the hiccups. Or a tickle which makes you want to a cough. Etc.

I explained that feeling every heartbeat unless I am distracted by most anything is like the itch or the twitch. It doesn't hurt and I may not be worried about it unless it is fast or skipping, but I cannot NOT feel it. All I can do is not talk about it, but that doesn't change the reality of my awareness. And when things last for months and years, it might come up in conversation...

These judgment people have just never experienced what you have experienced. Unless they are prepared to accept that what you feel is different from what they feel, maybe it is better to not discuss it.

There is a book entitled Do Not Think of an Elephant, which is entitled that because you cannot NOT think of an elephant when you hear the word. Some things are out of our control.

Anyway, that is my two pennies.

OLL

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I have been told I was obsessed with my illness, and if you recall I JUST got a diagnoses. Of course I was upset, frustrated, confused and so on trying to find the answers. I understand how upset you are with your co-worker for saying this. We are the only ones who understand how consuming this illness can be, no matter how hard we try to ignore it. We have faced the fact that we are not NORMAL and have to adjust to our symptoms everyday, every hour, ect.......

I can see how others feel that I'm obsessed, I try not to let it bother me. I have no control of what others think, and you know what? It's ok.....if they care about you then they would do the research and know how hard it is for you to live and work and should if anything, admire your strength. You are a smart, hard working person who is trying to do everything in your power to go even higher. Don't let someone who doesn't understand get to you. (((HUGS)))

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awww, amby your message made me cry....in a GOOD way! :blink: you're so sweet! thanks for recognizing my strength in working and even trying to go higher. it is tough, but i will keep going at it, with ALL my might, and NO GUY with his comments will stop me! :angry:)

you all are such an inspiration to me. let's all keep walking forward with this, and fight as best we can, to accomplish things we never thought we could in dealing with chronic illness....

lots of love and ****HUGS***** to you all.

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Guest dionna

B) i read this yesterday and it upset me too much to reply at that time. yes i have been told that i am obsessed. i was asked why i only talked about feeling POTS/NCS. i didn't realize that i did and honestly i didn't think i did. the times i talked about it were when i was explaining why i couldn't do something or i was just saying that i needed to sit or something like that. but then when i thought about it... i was always needing to sit or lay down. i was always needing to slow down the pace. i was always needing to eat based on my symptoms. i was always needing to take my medication or more pain killers. it wasn't that i was trying to talk about nothing but POTS/NCS... it was just that it affects every decison that i make all day long. when i eat, when i use the restroom, when i take a shower, when i have to rest, when i can stand up, when i can go some where, when i can watch tv, when i CAN do ANYTHING or when i CAN'T do SOMETHING.

since then i have tried to not even mention it... i try to just do instead of say that i am going to do something. if someone asks me if i am feeling bad... i have again started to say that i am just fine. but then they get upset when i pass out in the next second.

we are not obsessed! we are adapting how ever we can and how ever we know best to do so!

dionna ;)

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I don't want to be unsupportive....but I'd like to add something just to kind of advise against sharing too much about the POTS with non-POTSers. It's not like an US vs. THEM thing....but they just don't understand, and they come away from the conversation with a tag on you in their minds. Even doctors sometimes don't understand how it FEELS.

I think it helps to ID ppl who can understand and ppl who can't. To me, basically, I know that almost everyone around me, no matter how supportive they are, cannot understand. For the ones who just don't care, they actually seem pleased if I express suffering. I guess it makes them feel lucky for their small problems...but I hate that look on their faces. For the ones who care, it upsets them to hear how much I go through. So I have a general policy that when I'm down about it, I come to this forum and just feel normal for half hour or so, reading everybody's posts and commenting where I can find a relevant thing to add. I try to check myself from verbalizing anything else about the pots to healthy ppl. It's just like that.

But inside, I think I do get obsessed...at least there are days like that. Before I knew what I had, I tried harder to block it out bc of thinking that it might be conversion disorder. Now that I know what I have, I am trying hard to get a grip on it, and to figure out what my prognosis will be like in the long term, what meds might help get me back into normal activities, what steps I should take to better care for my child and protect her from psychological effects of seeing me sick her whole life...etc. So, yes, I am obsessed....and it doesn't help much that I don't have enough energy to do much else for distraction.

I don't like the obsessed days. I get annoyed from myself....I would like a break from my own mind sometimes. I don't like the constant nag in the back of my head that says, "You're only 25 and you'll be sick for the rest of your life....Your 80 year old grandmother does more than you....Get up and try harder....Just one more day..." and so forth. That's why prayer is the best outlet in the end. Praising God and His perfection, thanking Him for His every day blessings....it just transforms me. So, I guess I'm obsessed, but working on it behaviorally by checking myself verbally and inside too by trying to switch off the negative and just remember God more.

Hmmm..rereading this, I'm starting to doubt that any of it makes sense. Guess I'll post it anyways...

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masumeh...I can see your point,

However, I think it's unfair for people to judge us. We shouldn't have to watch what we say, although I find myself doing just that many times. It takes a lot of energy trying to act like everything is ok. We shouldn't have to pretend....it makes me angry that people are too selfish to have compassion. But that's ok too....it's their life and I can't FEEL for them. It just hurts when someone says things that maybe they shouldn't. We can't help how we feel.

I too try to save the "sick" talk for the forums or to people who are like me, but sometimes it can't be helped. My own husband tends to be pretty cold sometimes.....how fair is that? I resent that fact I have to push myself, and "pretend" to him that I'm better then I am. I'm glad you have GOD to turn to....that makes a great deal of difference.

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Hi, Amby:

I can relate to the husband issues. Mine wasn't so much cold as skeptical, which was so frustrating. He gets it now, though! There's hope. Now he is always watching and tries to help. If I take the last sip of my salty concoction, he jumps up and asks, "Do you want more 'juice' (as he calls it, lol)?" He's so much more supportive now, walks a little more slowly when I am with him, and tries to anticipate my needs.

Here's what I did... and it worked!

I learned as much as I could about POTS/dysautonomia and its mechanisms. Then, when I was symptomatic I tried to blend in a little of the "why" with the "how" I was feeling when I talked to my husband. That way he could understand why I looked fine but felt so awful.

I also related stories in the news to him and explained how they were similar to what I am going through. Two examples:

1. The Wiggles, lead singer/dancer quit the group because of orthostatic intolerance, much like if not exactly POTS. It helped him to understand that if someone successful and motivated could be knocked down with this, then I could still be the motivated person I was in spirit and yet struggle to work because of illness.

2. My Dad related a story from the Kennedy Space Center (where he worked until retirement) where a man, harnessed for safety, fell off the Vehicle Assembly Building (the HUGE grey building with the American flag and NASA symbol painted on the side, shown in all the shuttle coverage). When they finally reached the man, dangling about 150 feet off the ground, they found him unconscious, which was not supposed to happen. They later had a volunteer test the harness, and sure enough, he fell unconscious as well. They determined that the harness around his leg was cutting off his blood flow to his brain. I used this story to explain how the blood pooling in POTS reduces blood flow to the brain. It helped him (and my Dad) to have this physical accident related to what is happening (invisible to the outside world) inside of me.

I didn't hit him over the head with it... just small doses. Over time he came to understand and empathize more and more.

Something I always reminded myself during our transition stage (from happy, healthy couple to a couple living with POTS) is that he was experiencing a real loss, too. He might not have the illness, but he was now living with someone who did. That meant a lot of changes were happening in his life, and he needed time to adjust.

Your husband may just need some time, too, and he will probably become more empathetic as he understands more. B) If he doesn't, you'll always have your POTSy-go-lucky family here to help you through. ;)

Hang in there - it gets better! Sorry to ramble on...

Deucykub

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I think this falls along the same lines as being told we have "anxiety".... in the "before diagnosis" time. Well... let's see... any logical person who faints for no reason - and has fatigue and dizziness - is going to be "anxious" until the reason is found!

Certainly, I was taken to the point of tears - and when I started crying from the frustration my first doctor jumped up like he NOW had "proof" that the only thing wrong with me was anxiety - and he told me that!

Obsessed.... well, when you realize that if you don't stay constantly vigilant you could die from a head injury from falling if you don't watch where a pre-sync hits you, then, yeah, we - or at least I get obsessed!

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well ,I'll jump in here after reading masumeh's post. I thought my ways were odd, but it echos how she explained that ppl don't understand. I don't waste my breath. ppl have no clue. If I "make a scene" by collaspeing I tell folks to relax its no big deal I have abnormaly low BP but its not dangerous. While they are paceing around with the urge to call 911- I get up and go on my merry way. WHO"S overreacting now?

I do not tell my family- except my husband, any details. It makes one look stoic.

:P

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Masumeh,I have had POTS for 4 years,and have a wonderful family and some really close friends,(I am grateful for this) Butttttttttttttttttt I really believe, even after 4 yrs. none of them "get it". I think that besides all physical problems we have related to POTS, The frustration in trying to explain myself is the worst, so I try not to do it much anymore. Thanks to all of you who do "get it" P

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Sorry that your co-worker was so inconsiderate. What we really need is support and not judgment. I am thankful for my friends and family that understand that some days I am desperate to feel better, and yes a little obsessed. We need to be a little obsessed because we are fighting for a better quality of life. As you mentioned, it is not something any of us can walk away from. I think it is admirable to fight this disease with everything you have. You are a valuable source of information on this web-site, and many of us have benefited from your tenacity!!

When I was younger, I ran into this kind of issue much more. As I am getting older (now 40) more people my age have seen chronic illness in themselves and their close family members. It seems that more compassion surrounds me each year.

I also used to wish we could make our illness into a game of tag, and give the offending person as taste of our illness for a week. Maybe they would become more compassionate.

Rhonda

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I just had to chime in again,I guess this is not really about obsession,but frustration. Rhonda said as she gets older,some people are more understanding. I did not get POTS til I was 55,now 59. Until then I worked full time ,helped care for my ill mother,and had a social life. I was an incharge kind of person and pretty healthy and happy. Now I cannot do any of things and am ,like most of us totally different person. Whine whine whine. My point is that be older ,in my case, makes no difference to people understanding or being more tolerant. I am really sorry if this sounds negative,just trying to explain my situation. I am however grateful, that I had 55 good years. My heart goes out to all of you,whatever your situation,but especially all the youngsters.

P

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Pat,

You may be right, I have had 16 years to filter out the bad eggs and surround myself with the better ones. I lost many friends in the first 5 years of my illness. They could not accept that I was no longer the life of the party with lots of energy. It has taken me many years to find friends that could understand.

I have found more support as the years go by. It took a long time for my family to accept that I was ill. I have a brother who still thinks I am faking it.

Maybe I am just hopeful that we become more compassionate as we age.

Rhonda

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Cardiactech,

Don't you work in the healthcare field? I think I remember that or something. I could be wrong.

I work in the healthcare field as a nurse and my co-workers act the same way and it makes me sick. For one thing, you would think they would have a little more sympathy/compassion considering they work with sick people all day and know that it really exists and I'm not some crazy person. I totally understand your frustration!!!!!!!!!!!! That person would be the same way if they were in your shoes. You know the old saying about "don't judge a person until you have walked a mile in their shoes". Those kind of people should think about that.

Susan

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hi susan,

yep i do work in the healthcare field and you are 100% correct - people in medicine are FAR LESS compassionate than those that arent in the field....at least that is what it feels like. generally i do not bring up my symptoms or how i'm feeling most days because i dont want to hear people say "oh get over it" or "you LOOK fine" (it drives me nuts when they say "you look great" after you have just said you feel like crap, it is like they arent acknowledging your feelings or something -- it's some new age way of thinking i guess, that if you expell positive energy than it'll take away the bad energy - i work with a lot of people who think like that and it drives me insane - "if you think well, you'll be well", oh if i ONLY wish that were so!......there IS a power behind positive thinking, i completely believe that, but positive thinking doesnt cure a person of a PATHOLOGIC problem.

.......the thing that bothers me about this whole situation with my guy friend that works with me at the hospital is, i think i have a whole 2 times mentioned something to him about how i didnt feel well from two years working with him, and at the time of our conversation about "the eyes and how much you can tell about a person just by looking in their eyes" i hadnt even mentioned anything to him, for weeks, about feeling sick or POTS or any of it -- and out of NOWHERE, when i asked him what he thought about me/my personality when he looked into my eyes, the majority of everything he said was centered around this "your obsessed with your condition"........it hurts a lot to hear that because i really dont think i'm obsessed with my condition, but my condition really dictates a lot of what i do/dont do in a given day, so it is difficult not to simply be AWARE of "my condition" because of the limitations/restrictions that come with it....ya know? argh!

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