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someonewhocares

how to help her understand?

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A really good friend of mine has been diagnosed with POTS and I am trying to help her fight this illness and win. I have been understanding about the illness, but my family has always been the 'walk it off' and 'fight throught it' types. My way of understanding has often been to tell her that she can make it through if she tries hard enough and pushes through with bad doctors and bad experiences. At first, things were going very well and we have made some positive changes in her medication and attitude about the problems.

Lately, I think she has started to feel helpless against this overwhelming problem and has started to resent my positive attutude - thinking that I don't believe her and that I think she is just making excuses for not doing things or getting work etc..

I have some questions for the forum -

1) how do I make her understand that I do believe her 100% and that I just want to see her own personal strenth and ablity yo overcome this in the long run without making her feel like I am downplaying or minimizing the problem?

2) How can I help her overcome this and live as well as possible? I've been to doctors and to the hospital with her and done as much research as possible.

3) How can I get involved in this community more and make the medical field aware of this for her and others?

4) What am I doing wrong in making it clear that while some others don't believe her, that I believe her and just don't want her to give up on herself?

This is very hard for me and her, and I appreciate any feedback that anybody can give me to help me understand something that I know I will never truly understand. Any stories about your own experiences are very welcome. I know you've all tried to maintain relationships in the face of this disease and I want to know what you've run into so that I don't make the same mistakes that some of your spouses/boyfriends/girlfriends have.

Thanks for all you help! This forum is so uselful for her!

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I think you should show her this website and your post. You can lead a horse to water but you can?t make them drink. But she would be foolish not to see how much you care and how concerned you are.

Does she have a doctor that she sees for her POTS? Have you been to an appointment with her?

She has to be able to care for herself, your support is a large comfort I?m sure. I find it most helpful for someone that knows my illness to help me when I?m very symptomatic by guiding me through my brain fog. Reminding me to try certain medications, etc.

What makes you think that she doesn?t believe your sincerity? (I can?t believe I?m about to suggest this but have you two considered going to counseling for her chronic illness?)

3) WOW, Cool! I wish I had an immediate answer. Maybe someone else will be able to tell you where to start. We certainly need all the help we can get.

The best piece of advice I can give you in general is to keep a clear open channel of communication. Never try to guess what someone else is thinking, just ask them or tell them what your thinking.

I suggest you go back through the forum here and the NDRF reading some past stories.

You sound like a wonderful person and anyone would love to have a friend like you!

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She's already seen the website, and I'm not sure if she would appreciate me posting this. It seems like no matter what I try to do to help, I'm going about it the wrong way.

I've been to her doctors with her and in the hospital with her several times. I've advised nurses and doctors on her mdicines and history when she wasn't capable of doing so while in the hospital.

She gets very angry with me when I tell her to stay in fluids or take medication or not drink alcohol. Sometimes when she doesn't listen it lands her in the hospital or not feeling well, and it interferes with our relationship. I guess part of my caring and trying to help is selfish - I know she can be a more responsible member of the relationship if she takes care of herself. She just feels so helpless sometimes and I don't know how to help because I know what she can do to better take care of herself, and sometimes she just doesn't do it.

How do I tell her that I think she could take better care of herself without offending her? She gets angry when I just suggest that she could drink more fluids, etc..

How do I get her to accept that this is not going to go away and that she needs to be vigilant when it comes to medication and fluids?

Whenever I tell her that her not taking care of herself is interfering with our relationship and with her life, all she hears is that I think she's using her illness as an excuse. Maybe I'm not communicating in the right way - can anybody help me with their experiences?

Thanks!

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Guest tearose

Dear someone, you obviously more than care, you love her! I can feel your love in your words. That means maybe you are trying to help your love because you want her strong and healthy and able to hang around a long time with you. That may be part of the problem. She is "human and normal" and once in a while will "fall from grace" and have a drink or miss her vigilant schedule of "proper" dysautonomia behavior modifications...maybe she just needs you to listen and be there when she is having a wild and crazily "denial" period. She may need a dozen more trips to the doctor before she "owns" the desire to be vigilant. You can't change her, just accept her for all her challenges and all those wonderful qualities that drew you to her. If you can love her for who she is in this moment then let go and relax. If your worry is too great or if she is really causing permanant damage to herself, than confront her and ask her exactly what she wishes from you. Tell her that you want what is best for her and you hope that it includes you! Good luck, keep communicating, tearose

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Dear Someone,

I agree with the other posts as well. Though I do want to add that you shouldn't give up. When I was first diagnosed with POTS I was angry and needed someone to be at fault or to blame. My Mom is a nurse, and tried to help me understand it, and to get me to do what I needed to so that I felt ok, though she had my best interests in mind, it was just easier for me to push her away. Sometimes it just seems like too much to deal with, nobody including your doctor seems to understand, and you hear things like "it's all in your head." Just hang in there, your friend needs your support now, even though she doesn't seem like she appreciates it. My Dad still doesn't seem to think that there is anything wrong with me, we don't live together so he doesn't witness my everyday struggles, he like everyone else just sees me when i'm feeling ok, so in his mind there isn't anything wrong. It really helped when I found information on the internet to send him, and he's started going with me to the doctor and to the hospital when i'm really sick. When you get sick you really figure out who your true friends are, they stick by you no matter what. Your friend will come to accept her illness, and to want to do what she needs to so that she feels well.

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Wow...how amazing that she has a friend like you in her world. I was thinking what Tearose wrote as I was reading your post:

Maybe what she needs the most is for you to listen. From personal experience, I can say that there are times when advice or critique was not wanted by me...I just needed to have the freedom to be honest without feeling dismissed. Perhaps that's the best gift one can give? For me, it is those friends of mine who listen without judgement who've stuck with me the longest.

I commend you for being so dedicated and I'm sure your support for your friend is crucial, even if she may not act like it, or ever say it. Nina

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wow, to have a few friends like you!!! i think it is a real struggle not only for the person with the chronic illness, but the ripple effect it has on everyone is enormous. i also think that as a person struggling with this, i frustrate very easily. it's part of the whole picture of the illness. we don't have great control over our emotions most of the time. my hubby is always saying i am not hearing what he's saying, i'm hearing what i only think he's saying. i'm not sure if that makes sense, but after hearing that you are crazy about a million times, you start to think everyone, including the people that love you, don't believe you. you even start to think you are crazy. so we get very defensive. and sometimes so tired of doing everything we're supposed to and still feeling lousy makes us rebellious at times. i agree with every one else here. just ask her what she needs from you and let her know you are there for her. and i really think she needs to see these posts. no one that loves me would think to come on here and ask advice. she needs to know how lucky she is. best of luck. morgan

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First of all, I applaud your concern and interest. You are a friend indeed.

You repeated a couple of times the point where suggesting that your friend drink fluids is causing friction. I'm a caregiver of a 17-yr old POTS daughter, and sometimes "good morning" can be a friction point.

Understand that a "normal" person should be drinking 64oz fluids daily, and a POTS patient needs a lot more than that! You might like chocolate. But if you had just finished off the entire Whitman's Sampler box in one sitting, and someone suggested that you need to eat more chocolate, it might be a source of irritation.

My daughter and I have an agreement. I quit verbally mentioning the fluids issue. However, if I noticed she wasn't drinking, she was obliged to quietly accept my "gift" of a drink without protest if I handed it to her. We also try to keep a good variety of fluids available so that one might always be sufficiently inviting (or at least tolerable) to consume. Maybe you should quit talking about the fluids and simply hand her a drink and continue on with whatever the two of you were talking about.

Hang in there!

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Hey there everyone!

I am this girl that someone who cares was asking about. I am a co-moderator on the Va. forum with my friend Pam. I feel kinda funny saying that I am a co-moderator now that my weaknesses have kinda been revealed.

I am not upset with him for posting this at all. I am impressed that he made the effort to join this web site and ask for people's advice b/c my marriage was definitely affected by my illness and that is one of the main reasons it failed in the end.

Frustration is probably the main word I can use to describe what's going through my entire body at this point. Dr.s either don't believe me or don't know what to do. Different dr.s tell me conflicting information with other dr.s. Some dr.s doubt my sincerity in how much it affects my daily life. For example, I was hospitalized this weekend and asked the dr. about disability b/c it has caused me to not be able to work for almost a year now and his response was, " Yeah, your cardiologist should fill the papers out for you b/c some people are TRULY disabled from this." Felt like a backhanded slap in the face.

A lot of times when I feel like the dr.s are being harsh on me, "Someone" is like I liked him! And I'm scared to tell him that he made me feel tiny b/c I don't want him to think I am looking for pity. That is my main concern. Communicating exactly how bad I feel b/c I don't want people to think I am just seeking attn.

I have had a LONG history with health issues. A life-threatening heart problem that was mis-diagnosed as being "psychosomatic" for four years until they caught it on a night that they told me I would've died if I wouldn't have called an ambulance. So I am very sensitive when I feel people don't believe me.

I do try to keep myself hydrated, but b/c I'm being forced I literally feel like I am drowning when I drink. I don't drink alcohol all the time. When I do, it's just b/c I feel like being a normal person for a few hours.

I know this "someone" loves me and I appreciate him more than he knows. I just feel like he's coming down on me when he's really trying to say he cares. I guess my reccomendation for him would be to choose different words.

I love him very much.

Frances

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