Need Some Encouragement!!!!!!

[issie]

Since I'm new to where I live, and making new friends, you can only hide your illness for so long and then the people get to see the full effect of what POTS does to your life.

I had a REALLLLLLY bad week, and just now feel like talking about it. I Couldn't get out of bed or even raise my head off the pillow. One of my supposedly best friends, decided that she couldn't deal with having a friend who had illness. She had her husband tell my husband the reason why she had quite coming over or calling or anything. This happened right before I had the horrible accident and broke my foot off my leg. She came to visit once after my accident -her husband made her - and she told me I would be just fine, I could take care of myself, when my husband would be gone all day for work. (Mind you, my foot is broken off my leg, with pins and plates and screws. And on top of it POTS.) I realized then that she didn't intend to help or be there for me AT ALL. I said, I guess I would be fine. And that's the last time she came over.

I did however, have another friend who stayed with me and helped me until I could do for myself. When you're ill, your true friends shine, and those that aren't split.

DON'T WE WISH FOR PURPLE POLKA DOTS!!!!!!!!!! Right now === MY HEART IS HURT!!!!!!!

It takes allot to expose yourself and try to be a friend and be there for others, when we feel so bad. But, then when we need them ----they leave. They can't deal with the magnitude of our illness. Goodness knows===WE CAN'T DEAL WITH THE MAGNITUDE OF OUR ILLNESS!!!!!! Just needed to tell some people who understand. Got the Booo Hooos. Tomorrows another day.

\\ Hope the SUN is out.//

[emadden514]

Hi Issie,

This is my first post (I've been lurking), but I just wanted to acknowledge that you are hurting. I'm so sorry that someone who was supposed to be your friend abandoned you when you needed them. I guess that shows she wasn't the right friend for you. It sounds like her husband is actually a better person than she is. He showed concern. I'm happy that you did have a friend step in to help you during this though. I've been through a lot over the years and I know who my true friends are. I don't waste any time on the ones that aren't. When you don't have a lot of energy, it can be tough to deal with any extra aggravation. Try to put her out of your mind and move on a bit. I know it's hard, but she's not worth your energy. Passing well wishes along. Take care of yourself.

Elizabeth

[potsgirl]

Issie~

My heart is aching for you. I'm sorry there are people in this world who just can't deal with things when they get tough. As emadden514 wrote, she wasn't a good friend for you anyway. There are so many caring people out there who ARE with your time and energy. And you're such a good friend to others, including me. Try to think of it as taking a negative out of your life, and eventually you'll replace it with a positive. I wished we lived closer - I'd drive right over and give you a nice, big ((((hug)))).

Take care of you, and know that you're worth more than how that woman treated you. I wish I could take some of the pain away, and that so many of us didn't have to go through these losses.

Best wishes,

Jana

[lieze]

Wow I'm feeling the same thing here on a different level.

I'm not sure if sharing another story would help.

But I am a group leader of a support group that is not POTS related.

I tried to share a don't give up. A how about reinventing yourself post starting with something new each day that you want your life to be?

Something those of us with POTS can relate to.

One of the other members posted she hates positive people and positive people can just stick it.

Umm?

Issie you've got what it takes honey. You keep on going despite all of your problems.

You are a strong women and it seems evident to me that some people just can't hack it.

That doesn't mean that some times we won't need an extra hand to get through the day-part of our strength is in knowing when we need that help-or when maybe it isn't best to tackle certain things. Just as prePOTS we might not choose to wrestle a bear--might not be in our best interest.

I am sorry that you lost a friend. Maybe in some way you will touch her and it will slowly open her up to "real" life situations and she will eventually get it.

She just isn't there yet.

I don't equate what I did with what your friend did by telling a person they can make it.

It's two very different situations. you can heal but yeah you needed help for a while there.

Thank goodness for the friend that could see that and gave you a hand.

I guess we can't let what one person says or does get us so bad.

I was in tears and it makes me want to stay away from the whole group just because one person had to be such a sourpuss.

Be kind to yourself for a while.

Stay around people that do help you and I don't know what to say about the others.

Maybe they will come around in time. Maybe it is totally about them and we shouldn't take it so personal?

I'm not sure I just know at the time it can really hurt.

I'm sorry you experienced this and I hope things go better for you.

[issie]

Well, the SUN IS OUT -- all your comments brightend my day. We've all had similiar issues but it's really hard until the pain goes away. You just realize that there are some people where friendship is only a one way street. The way they are going. Thanks for the encouragement!!!! We all need some of that from time to time.

You are all right --- I'm not going to let one person --take MY "JOY" away. ONWARD INTO THE FUTURE!!!!

emadden514 - I feel so priveledged that you choose to make your first post on my behalf, and such a good and encouraging one at that. Welcome to our little family here. I think you will get allot of information and guidance in your journey with us here.

potsgirl - Hugs back at ya!!! You've had your plate full lately too. I'm looking forward to actually meeting you.

lieze - ya know there are some people who want to stay sick and drown in there pessimessitic ways. Consider the source. She is probably allot more miserable than she made you. Can't imagine someone not appreciating an optomistic outlook even in adversity. You hang in there. There's others in that group that need the "positive".

[TXPOTS]

Issie,

Thanks for bringing up this topic. I lost one of my best friends and several other after my diagnosis. I could no longer keep up with these other moms who lived a very fast paced, overbooked lifestyles. I was left in the dust. To my amazement, other people I barely knew came out of the wood work to help and offer words of encouragement. Funny how people's true spirits are revealed in times of trouble.

[shanying418]

Hi Issie,

I'm glad you are feeling better emotionally I just want to acknowledge your pain. It is hard to deal with illness and keep loosing friends--if any even stick around. Please remember there are always people out there who will be willing to listen and give you a hand when possible. I hope you'll always have great friends surrounding you and help you whenever you need.

[jem15]

First, Issie, sorry you had to experience that. It's gonna hurt and stink, but like the others said, no one really wants friends like that anyway, and her behavior is reflective of her flaws, not yours. Of course it hurts when we think people are good friends, and then true colors show, but unfortunately there's nothing we can do about it. We are what we are whether people want to accept it or deal with it. I see how being ill for so long wears on people around me and it's hard, but I'm starting to learn who can handle hearing about it, who cant, who I can depend on more, etc.. and hopefully all of us can at least hang onto or find some "good ones" and find comfort in that.

Lieze- "One of the other members posted she hates positive people and positive people can just stick it."..

I just wanted to comment on that. It's funny, that's a big subject amongst the young adult cancer community too, as I'd imagine it is with other health issues as well. I'm sorry that member made you feel bad and wasnt so eloquent or respectful in how she phrased her comment. But, I just wanted to say I can understand the other side and see where she's coming from, though ha, i wouldnt have phrased it in a hurtful way.

When I was diagnosed with cancer and going thru treatment, all people had to say was "Be positive" and it used to drive me crazy! And it wasnt that I wanted to be negative or even pessimistic. In fact I was quite hopeful, and persevered, and wanted to believe things would work out. But sometimes the way it's said to people that are sick, no matter what the illness, it implies you can just think yourself well, if you just click your ruby red heels , all would be better. It sometimes, though not always intended to, implies if the person was just "positive" all would be better, and it's their fault they're sick. Or at least sometimes that's how people interpret it. Often others just dont know what to say and offer that up to console someone, but sometimes people get pushy with it, and really try to act like that's all it takes. Also, if someone needs/wants to vent about what they're going thru, and someone tries to suggest positive stuff, it can be invalidating to that person's experience, and cause the person to feel bad.

Now, not saying that is what you were doing or trying to do at all. You were trying to encourage hopefulness and help people find a way to deal with what they're going thru. But since we dont know what others have experienced, maybe that person has heard and keeps hearing "just be positive" , and so the next person that says anything remotely like that, gets told off. You don't know, or ha, that person can just be a not so nice person. Anyway, my point is, try not to take it too personally, there could be alot of other issues surrounding that statement and where that person is in dealing with her illness. And I know for me, eventhough overall I try to be hopeful and cope well, and not give up, etc... if I'm having a bad day and someone is like, oh just look on the bright side, or do this, etc.. i might not want to hear it at that time. Again, not that you were saying those things, but it could've been what the other person heard. And not to justify how she said things, she didnt have to be rude even if those were her feelings.. but I just wanted to give you another perspective on it, in case that helps you feel better bout the situation.

[issie]

catterpilly15,

I understand what you're saying -- sometimes people are of the opinion to "pick yourself up, dust yourself off and put a smile on your face and life goes on." Even though that is impossible to do in a chronic illness. They know it's impossible when they say it, but ---at least they are saying something, anything. Allot of times people don't KNOW what to say. So that is what comes out of their mouths in an uncomfortable situtation.

But, in lieze's case, it sounds like she is going through whatever group she is in same situation and trial. She is just trying to encourage fellow sisters/brothers in the illness. So, in this case, I can understand why she was hurt and felt rejected. When your own kind rejects your encouragement, when you are in the same boat together --- it doesn't make sense. We can all disagree with each other, at times, but we stay united in the fact that we're in the same boat -- although, all unique in our own ways and symptoms. None of us are in the same place as far as severity or complexities, that varies. That's true of any chronic illness. We have to have compassion for each other -- because we understand each other better than any one else possibly could or will, UNLESS -- they have to get in the boat with us. Then, the story changes and then realization sets in. We have to look at others with the understanding that they don't understand and can never REALLY understand. So, we can cut them some slack because basically it's IGNORANCE on their part. JUST NOT KNOWING!

But, at least they acknowledge our pain and TRY (although, sometimes not to well) to say something, anything to us. It's those that do TRY to say something -- that care.

Shan,

Thank you for your kind words of encouragment and well wishes --- those wishes extend to you too!!!!!

TXPOTS,

Sorry you experienced it too. I'm sure many have. But it sure does hurt. Glad you found true friends to help.

[houswoea]

Issie,

How did you break your foot?

Sometimes I want to tell the people who "can't handle" our illness, "Huh... I'm handling every single day. You don't think I know it's hard?"

But sometimes, the best thing to do is love the one who abandoned you anyways. It's hard, but it helps!

[tinkerbella]

(((((((((((((((((((((LONG DISTANCE HUGS TO YOU))))))))))))))))))))))))))))))))))))

I am so sorry for you sweet one..OUCH, that must hurt bad!... I know just how you feel. How can we except friends to understand when half of us can't get family to understand. That is why we are here FOR EACH OTHER! AND LIKE JANA SAID...DITTO!

IF you ever need someone I'm almost always here or answer people back if you need to vent. I'm laid up with a torn meniscus of the knee we'd make a great pair. Are you able to get able help through your insurance company. I get 7 hours a week of a homemaker, it helps take the burden off my children from all the help I need....as they also have a life...Hang in there. : ) Friends left me also, because they think you'll use up all there time... I say there loss!!!!

Those who have stuck by me are my true blue friends, and my online friends here are where I can come for great support.

<3 u all. bellamia~*

[jem15]

Issie- yeah, youre right, it's sometimes easier to cut some slack to those outside of our situation, cause they don't know what else to say, and you know they're just trying to say something "helpful". So yes, it does make it more surprising and hurtful that it was a fellow group member. And I'm totally not saying that person was right in how she said things, there's no need to be hurtful when Leize was just clearly trying to help and offer support, and did nothing wrong. Everyone should be able to express differing opinions without feeling chastized. So yea, I totally get why Lieze felt bad about it. And I felt bad when she said it makes her not want to participate in the group anymore, so I was just trying to make her feel a bit better and maybe not take it as personally, cause eventhough we are all in the same boat, obviously we handle things/cope differently, and a comment like that person made, can reflect a lot more about them and where they are in there coping process.

Or ha, like I said before, the person can just be a mean person, and then yea, the person shouldnt bother being in a support group, if they're just there to criticize others. And of course I wasnt there, and I dont know if that person has a pattern of being insensitive or not, so the person couldve totally meant to be hurtful, but just my initial impression reading the comment for some reason, and maybe my frame of reference was skewed due to my own experiences with it, it struck me as someone not necessarily trying to come off mean, but based on the subject matter of the comment, was more trying to express frustration over hearing postive advice when she's hurting, of course the person just did so in a really inappropriate way. I hope the other group members appreciated Lieze's advice and that the experience was just an isolated incident. It's a shame and defeats the purpose when a "support" group becomes an unsupportive place.

[issie]

But sometimes, the best thing to do is love the one who abandoned you anyways. It's hard, but it helps!

Good advice!!! I've learned that it hurts the person alot more if they hold on to their anger or hurt. The other person really doesn't know the extent of your pain, only you do. If you can forgive and then forget, it makes your heart feel better. Of course, you are more cautious with that person. But, letting go of the negative aspects of the situation is a healing for you. But............that's gonna take a little time.

Broke my foot with a fall over a parking curb. Still not sure if it was POTS related or not. Was having the dizzies, but didn't see the curb. My foot stayed planted as my leg and body wrapped over and around it. It was like slow motion as I realized my foot was up on my calf. Uggghhhhh, I think I have a little post traumatic stress over it, keep having flash backs. I'm better now, got a really good surgeon ---Thanks to God! I'm using a walker to walk some now. It will be a looooonnnng recovery they tell me. They said I may have to have more surgery in a few months. They are waiting to see if cartlidge damage shows up. Has to come from the inside out. Thanks for asking.

[issie]

(((((((((((((((((((((LONG DISTANCE HUGS TO YOU))))))))))))))))))))))))))))))))))))

I am so sorry for you sweet one..OUCH, that must hurt bad!... I know just how you feel. How can we except friends to understand when half of us can't get family to understand. That is why we are here FOR EACH OTHER!

<3 u all. bellamia~*

Thanks Bellamia,

You are a sweetheart. Always there to send a hug. Hope you get better soon with your injury. We would make a pair.

Issie

[lieze]

Ouch!

That had to hurt.

And yeah I'm learning to just detach and not let the drama get me and just keep going.

We have to connect where we can and save our energy for that and try to overlook the rest.

Give us updates and let us know how you're doing!!!!

[princessmk]

Hi Issie,

I know this is coming a day late, but just wanted to say I'm sorry that you are going through such a tough time. Our chronic illness/pain can make daily life such a challenge and then our *friends* dump coals on our heads! I too have lost many friends (and gained a few unexpected ones) along this POTS road and understand how hurtful and lonely it can be. ((Hugs)) And you'll be in my thoughts and prayers!

Mary

[Kujiforo]

Most of my friends are wonderful. My family, not so much... So I can sort of understand. I just try to not listen to all they say that just hurts me on the subject of my illness. I've enough problems just trying to survive feeling like I am dying each day. So sometimes we just have to learn to shut everyone else's opinions of us out and learn who really supports us and keep them closer.

[comfortzone]

Glad you wrote - sometimes venting about the awful injustices we endure while we're struggling - is really healthy....... Just getting it out there and out of the inside of you hopefully will be healing. As to what happened - you're right it stinks. Big time. Sometimes it's the kind and generous souls that seem to get trounced on. People cringe and shy away when they see all we deal with and that we keep on going - we keep managing a smile now and again and we still are generous and as helpful as we can be - in our pain. They on the other hand are likely not so uncomfortable about your discomfort and pain (they are too selfish for that) they are uncomfortable in their stinking guilty conscience - yet they are too dull to know. You remind them of everything they are not perhaps. Well good on you and shame on them. May your light out shine any darkness they exude.......may your good example bring healing - You are one strong person - this we know........ Be at peace ~ you did nothing whatsoever wrong to incur this.... You deserve supportive, wonderful, like-minded, compassionate friends to travel life with ~ may they continue to filter your way!

[issie]

Glad you wrote - sometimes venting about the awful injustices we endure while we're struggling - is really healthy....... Just getting it out there and out of the inside of you hopefully will be healing. As to what happened - you're right it stinks. Big time. Sometimes it's the kind and generous souls that seem to get trounced on. People cringe and shy away when they see all we deal with and that we keep on going - we keep managing a smile now and again and we still are generous and as helpful as we can be - in our pain. They on the other hand are likely not so uncomfortable about your discomfort and pain (they are too selfish for that) they are uncomfortable in their stinking guilty conscience - yet they are too dull to know. You remind them of everything they are not perhaps. Well good on you and shame on them. May your light out shine any darkness they exude.......may your good example bring healing - You are one strong person - this we know........ Be at peace ~ you did nothing whatsoever wrong to incur this.... You deserve supportive, wonderful, like-minded, compassionate friends to travel life with ~ may they continue to filter your way!

Written so beautifully, thank you for your encouragement!!!!

[issie]

Thanks to everyone who has responded, it sure has brightened my week. It's so nice to have understanding and support.