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I'm sorry your husband is not supportive--mine is very supportive. But, I can see he gets overwhelmed at times and that makes me feel guilty. But, what can we do? I can't magically make myself function or be better. It is what it is.

And, I hear you on the being left behind. Being out of group functions doesn't so much bother me as much as being made to feel like I am not participating. Did that make sense? I wish I could participate, but with the way I feel, I don't feel like it. But, others in my family group look at me like I choose not to participate. I just do what I have to do to maintain my low level of functioning.

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Things improved for me when I got too weak to drive and hubby sat in on my doctor appointments. That's when he started to get a clue. Now he is one of my best advocates. But I truly suffered alone for two years before that happened.

I was the one who ran the house and managed everything and he was used to it. Let me tell you, it was a big learning curve for him, but it did happen. So there's always hope.

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Yes there is always hope. I think my significant other (been together 12 years... i've been sick on and off for 10)...... at first, I would have relapses of periods of no function and many symptoms, then long periods of function..... hubbs would throw out nasty remarks that i was lazy and stayed in bed all the time, etc. He wasn't too bad with it, but it was hurtful. He also made me feel low down and good for nothing due to his remarks at first.

As he watched me be admitted to the er several times and once he started going to the docs with me, and once they actually (after 9 years) diagnosed me with something..... then he was like...... 'oh... i had no idea'..... and see, he had congestive heart failure, was in intensive care for 2 weeks about 9 years ago..... so, when vanderbilt said that this disease is like living with congestive heart failure every moment.... i think it kicked in for him.

He's been very very supportive, but we also work well as a team together too. He takes care of me, pretty much, never makes me feel bad about being sick and bedridden alot (80% of the time really)..... and although he doesn't understand how bad im sick, he tries to remember how he felt when he had congestive heart failure. He's laid off of me with the house, cooking, laundry, etc...... as he knows i just can't do it very often here anymore, and he very very very rarely says anything negative..... although he does get aggravated just as much as i do about this disease and all of my limitations.

Hang in there..... if you have or get a diagnosis, it would/could help if the spouse went to some doc appts to hear from the doctors themselves......

i've been there.... i have felt like a huge burden on everybody.... my teenage kids, my parents, my sister and brother and my hubbs.... but i think i've gotten past that, although i still feel that way from time to time.... as it's only natural im sure.

hang in there and let's hope he comes around soon for you!!

best wishes :)

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I'm 15 (not married :)) and my own family does the same thing sometimes. "you're POTS is ruining our life", "it's all about you", " we all know you feel sooo bad, now come go iceskating with us". At the beginning this upset me so much and I was looking for any way to make them understand because I was hurt and frustrated. But I've learned you can't make them understand. Now I just take it with a grain of salt and try to put myself in their position. My POTS has taken over their life, it is basically about me all time, and they are upset that I I'm not myself anymore. But over time they are starting to realize that there is nothing I can do about it(besides striving to do what I can to help myself get better) and giving me a hard time about it isn't going to help anyone. I'm really sorry, it's the worse feeling I know. (((hugs)))

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sonya Hi.

I definitely feel like that I am and he confirmed that I am a burden just this week as a matter of fact. I'm still feeling very down and depressed about. It's kinda a catch 22 because he's very helpful taking care of both me and the kids but at the same time, hates his own life because he can't do what he wants because he's always taking care of me/us. We had a talk the other day and says his life is no fun and i asked what I could do to help and he said "Get Better" :(

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sonya Hi.

I definitely feel like that I am and he confirmed that I am a burden just this week as a matter of fact. I'm still feeling very down and depressed about. It's kinda a catch 22 because he's very helpful taking care of both me and the kids but at the same time, hates his own life because he can't do what he wants because he's always taking care of me/us. We had a talk the other day and says his life is no fun and i asked what I could do to help and he said "Get Better" :(

Oh my misstraci ~ reading your post just made me melt in sadness. Im so sorry.... im not even sure what to say other than huge hugs to you and you will def be in my thoughts and prayers.... and so will that hubby. Maybe he needs some leisure time here and there??? but then, i understand there are sooooo many issues within a marriage in dealing with how sick we are. :( Big hugs to you my dear :) hang in there :)

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Dear Soniasmith 12,

you touched a sensitive issue! I have been with my husband for 12 years, unlike me, he is very healthy which is good but you uderstand what i mean!

Only one time he came with me to my cardiologist (EP) who told me: (I don't see anything wrong with you physically, try to occupy yourself and I advise you to join a Yoga class or something). Since that time (11 years a go) I am not only can't talk about my POTS problems and sufferings, I also have to hide any expression of pain otherwise my husband will make an ugly remark about the Yoga classes. I am not denying the benefits of Yoga, but I am obviously under a lot of pressure if not abuse!

That cardiologist knew about my positve TTT, NMH, MVP, severe migraines, SVT and my very narrow pulse pressure (1 or 2).

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