Old 07-03-2017, 06:59 AM #1 (permalink)
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Default So called " support team "

If I could clone myself I would!

Somewhere, somehow I learned how to lovingly and caringly support my family and friends when they are ill or sick or discover that they have a serious condition.

Here, from strangers we find HB's who know how to say the right things, to make suggestions that we can try or do.

I've also noticed that there is a pattern that I follow making excuses to those around me who seem to say or do the wrong thing most of the time.

When I feel a little tenderness and loving compassion it makes me feel safe, loved, cared for in such a way that I might even sleep better at night knowing that if the show was on the other foot I would be checking in on my loved one all night and all day to make sure they were comfortable and they needed nothing that I could get for them, or make a call for them, or speak for them, to be an ADVOCATE with a capital A.

Oddly, those who seem not to know how to support a person who can use the love and support often defend their actions or lack there-of. What's up with that?

Someone told me that people who are always making the subject about them are too self absorbed in focusing on them-self and telling anyone who will listen about their aches and pains or how hard it is to support a loved one with an ailment that results in pain and discomfort on a regular basis.

When I find myself around any HB who shows compassion and love I tear up for other reasons besides my pain. I feel happy to know that people like this exist in the world and every once in a while I imagine have one of them in my camp while I weather the storms of unexpected and unpredictable surprises that knock the wind out of my sails more often than I like to admit. That includes doctors also.

Are there doctors who know and will say: "WE WILL GET THROUGH THIS TOGETHER!" I only dream about doctors like that and must admit that I have met a few of them over my life time but they are getting heard to find "

Any similar experiences, thoughts, or feedback?
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Old 07-03-2017, 10:12 AM #2 (permalink)
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Default Re: So called " support team "

I SO totally agree with all your saying.
The World can only hold a very few choosen ones!
Your one!! So am I ! And probably everyone else who is struggling with this illness is!!
You Matter , and So do I , and all of Us!
I have learned to put up my protective barrier so I can't get hurt by other people's ignorance and unhelpfulness.
This is why this Group now means everything to me .
I have to work hard at protecting my Super kind heart!
I also stopped looking for any feedback from anyone, because after years of the insensitivity of others they Simply will NEVER get it , Docs included.
I hope that changes someday. I'm going to pray.
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Old 07-03-2017, 11:14 AM #3 (permalink)
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Default Re: So called " support team "

I'm in the super sensitive club...its true i think its why we have this illness..at least a good part of why our bodies succumb. There is definitely a mind/body link.

Thanks for the post Vangogh you are clearly a sensitive soul.

Last edited by diamond : 07-03-2017 at 11:53 AM Reason: spelling
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Old 07-03-2017, 06:26 PM #4 (permalink)
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Default Re: So called " support team "

I hear you. It's so very lonely to be ill and not supported. I'm very lucky in that my spouse and children are very supportive and I have a fibro friend that I can share the experience with. It still hurts, though, that my siblings don't acknowledge that I'm ill. It would almost be better if they acused me of faking it, because then at least I could retaliate. But, they simply don't acknowledge, don't ask, don't mention ... If I mention it, it's met with a 'hmmm' and the subject is quickly changed. It so reminds me of being a child and being accused of inventing a sickness or being 'over dramatic'. And friends - unless they're incredibly close or share the same experience - they simply don't understand and I don't want to go on about it.
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Old 07-06-2017, 05:08 AM #5 (permalink)
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Default Re: So called " support team "

Quote:
Originally Posted by Maria22 View Post
I SO totally agree with all your saying.
The World can only hold a very few choosen ones!
Your one!! So am I ! And probably everyone else who is struggling with this illness is!!
You Matter , and So do I , and all of Us!
I have learned to put up my protective barrier so I can't get hurt by other people's ignorance and unhelpfulness.
This is why this Group now means everything to me .
I have to work hard at protecting my Super kind heart!
I also stopped looking for any feedback from anyone, because after years of the insensitivity of others they Simply will NEVER get it , Docs included.
I hope that changes someday. I'm going to pray.
THANK YOU MARIA! It was a pleasure finding 3 FIBRO members RELATING to my words. At times that is all it take is a sincere: " I HEAR YOU! I FEEL YOU! I GET YOU! to put a smily face on the day.

So here's smiling back at you kid!

Thanks for the love and support!

Your Friend in PAIN!

TVG
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Old 07-06-2017, 05:10 AM #6 (permalink)
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Default Re: So called " support team "

Quote:
Originally Posted by diamond View Post
I'm in the super sensitive club...its true i think its why we have this illness..at least a good part of why our bodies succumb. There is definitely a mind/body link.

Thanks for the post Vangogh you are clearly a sensitive soul.
A BIG WARM TY Diamond for your acknowledgment!

If you can see the other comments then you will see andf know how I think and feel about all of you who JUMPED IN immediately to say: " I'm WITH YOU! "

Thanks Diamond: shine on!

Sincerely
TVG
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Old 07-06-2017, 05:22 AM #7 (permalink)
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Default Re: So called " support team "

Quote:
Originally Posted by Marvis View Post
I hear you. It's so very lonely to be ill and not supported. I'm very lucky in that my spouse and children are very supportive and I have a fibro friend that I can share the experience with. It still hurts, though, that my siblings don't acknowledge that I'm ill. It would almost be better if they acused me of faking it, because then at least I could retaliate. But, they simply don't acknowledge, don't ask, don't mention ... If I mention it, it's met with a 'hmmm' and the subject is quickly changed. It so reminds me of being a child and being accused of inventing a sickness or being 'over dramatic'. And friends - unless they're incredibly close or share the same experience - they simply don't understand and I don't want to go on about it.
Thank you Marvis for your comment and support!

It is like a booster shot seeing and reading and hearing what others have to say when they relate to words and comments about our thoughts and experiences.

The last few days I've been involved in lots of unexpected testing as an accidental siting of " area's of concern " showed up during my full spine MRI.

In the next few days I may find out just how bad things are and since I do not yet have an official DX for FIBRO whatever shows up is at least a plus on the side of actually SEEING something.

I will probably write about it some since our posts may help others who are going through similar situations.

It was smile making to find your post along with one from Diamond, and Maria.

I feel like one of the three Musketeers or actually the fourth one who I always liked and related to most anyhow. So nice to hear from you all!

1 for all and all for 1

D'artagnan aka TVG .>
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