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Posted By: ilbcrzn Thought I was over this....vent - 07/05/13 05:09 AM
Hi everyone

Well it was another family get together and I usually try to do the best I can. There are a few family members that I try to avoid because they seem to be oblivious and it is really hard to be around them. The first thing someone does is give me few friendly punches on the shoulder and asks how I am doing. I yelled out and said that really hurt. He then called me a wuss. He knows that I have AS and Fibro and I know I didn't overreact because the throbbing in my shoulder lasted for hours. My pain levels were up and the noise from everyone talking at once stressed me out so I thought I would go in the livingroom, find a comfortable chair and just chill out for awhile. After about ten minutes all the guys decided to come in the room and talk. I got up to get a drink of water and one of the guys sat down where I had been sitting. No problem...stood in the doorway for a few minutes, talked and then went in the sunroom and laid there, trying to join in the conversation from there, got up again and stood in the doorway, trying to stand in a way that wasn't painful. One of the girls who had walked in sat on the brick ledge, looked over and saw that I was not comfortable offered me a seat next to her, I said thanks but the brick is too hard for me to sit on. Everyone else in the room was oblivious.

When we were leaving, she came to me with the look in her eyes that says, yeah, I get it. All I said is I don't need people falling all over me, and I don't want or expect that but a little consideration would be nice every once in a while.

This doesn't happen all the time but it happens enough that I feel like I should reconsider going to family functions because of the pain and lack of adequate accommodations.

Maybe I need to be more assertive but that is not who I am or my style.

I thought I was over these kind of feelings but I guess things like this bother me every once in a while

Thanks for listening to me vent but I really felt like I had to get this off my chest.


Whew!!! I feel better already blush
Posted By: SUPNut Re: Thought I was over this....vent - 07/05/13 08:57 AM
Sending you hugs Jeff hugss

That has got to suck when family behave like that and sorry, but macho BS like calling you a wuss makes my blood boil! I bet they wouldn't last a day in your shoes!

I'm glad the one lady was empathetic. Hope the shoulder is feeling a bit better - I totally get that, had a lady I didn't know very well (but did know about my condition) smack me on the bum while telling a story about how her husband had accidentally smacked another lady on the bum in the shops thinking it was her - I saw her pull her hand back but didn't think for one second she would actually hit me - I hit the deck and couldn't stop the tears!!! In some ways it was a good thing, no-one in that group goes anywhere near me now!!

Take care
Posted By: marion333 Re: Thought I was over this....vent - 07/05/13 10:11 AM
I feel for you Jeff, you need to be more assertive, even if it doesn't come naturally.
It is ironic how often we end up because called "wuss" or "softie", when we put up every day with levels of pain that would have most people in tears !!
I know for a fact I have a high pain threshold, but when I'm flaring up the gentlest touch can feel like a vicious punch...
Posted By: inkyfingers Re: Thought I was over this....vent - 07/05/13 12:31 PM
4 U Jeff:

Sorry some of your relatives are insensitive jerks.....

Hopefully these are more *manly* than hugss.....





Posted By: SimplySouthern Re: Thought I was over this....vent - 07/05/13 01:04 PM
Ignorance is Bliss and some folks are well into that mode.

Sorry to hear it was less than enjoyable for you. The good news is all in this group well know where you are coming from. A little compassion and understanding comes free but all too often there are those that step over using it. Hugs!
Posted By: Sue22 Re: Thought I was over this....vent - 07/05/13 01:14 PM
Sadly most people are clueless! and just can't relate!

Next family get together, take a cane and smack em' upside the head next time they get on your nerves or better yet, run them over with a personalized golf cart! (not that I'd have the nerve to do either, but it does feel good to fantasize about such things)

Sorry (some) of your family is so insensitive.
Posted By: Timo Re: Thought I was over this....vent - 07/05/13 01:23 PM
I don't have siblings so I'm not the best to answer but those actions got me thinking.
Responses to the punches or similar actions:

1. "Even though you're as sensitive as a brick I hope you never get this disease."
2. "I hope you get this disease so then you'll understand."
3. "You know we're family, right? Some get this later in life. Wanna hear the stats on that?"
4. "Wuss? I brought with me 150 sharp needles so sit down for a few minutes (oh, and take off your shirt for a bit) and I'll explain in detail. Hey, where you going? Wuss."
Posted By: SimplySouthern Re: Thought I was over this....vent - 07/05/13 01:36 PM
Wooooo - I LIKE! lol

I saw something on the news last month where they had developed a way to transfer the level of pain of childbirth and had men going through it. They came out with a very different viewpoint.

I'm game to suggest it for AS!
Posted By: Dotyisle Re: Thought I was over this....vent - 07/05/13 02:01 PM
Hey Jeff,

Sorry to hear about the relatives... many have posted a similar vent at some point, so you are not alone.

When I was younger with AS was more of a problem when my much younger cousins (15-20 years younger) wanted to play some sports, get a piggyback ride. Most of the adults in my family are very understanding due to my fathers AS at the time... so he cleared the path for me.

Thanks

tim
Posted By: Possi Re: Thought I was over this....vent - 07/05/13 02:08 PM
((Jeff)) I am so sorry. I do understand. I did avoid family functions for a while. Now, my immediate family (children, grands, hubby) run interference for me. They will jump up and say "Here, Mom, let me get something comfortable for you to sit on." Life is so much easier since they "got it".

I hate it this happened to you. I know you don't want to miss your family getting together. Maybe you will have to be a little assertive to take care of yourself.

I wish there was a way to get a pie to you without it being all over the Post Office. :o)

Hugs, friend. I can remember thinking after a holiday. "Well, don't have to think about that again until Thanksgiving." etc.

Get rested today.
Posted By: rumble Re: Thought I was over this....vent - 07/05/13 05:52 PM
Gentle hugs for you. Sorry the family is so dense. Timo had some interesting solutions. Or Sue's 'whack 'em with a cane' thought.... Get some rest and ponder your comeback phrase. Preparation is everything. wink
Posted By: Sue22 Re: Thought I was over this....vent - 07/05/13 08:16 PM
Originally Posted By: Dotyisle
Hey Jeff,

Sorry to hear about the relatives... many have posted a similar vent at some point, so you are not alone.

When I was younger with AS was more of a problem when my much younger cousins (15-20 years younger) wanted to play some sports, get a piggyback ride. Most of the adults in my family are very understanding due to my fathers AS at the time... so he cleared the path for me.

Thanks

tim


Back when I was at my worst, we were over at my sister-in-law's house. My husband was playing with our nephews and needed a rest so he told them to play with me for awhile. I love kids' honesty: without missing a beat, one of them said, "We can't, she's old!" (BTW, my husband and I are the same age, and back then would have been in my late 30s or early 40s). LOL!

I think its maybe a bit easier for women because society doesn't insist that we be "macho" (in reference to the "wus" comment.) But still, I guess its never easy when people don't get it.

I must say much of my family and friends do get it, and I am so appreciative of that. The others have mostly slowly come around. I think its mostly people at work that I'm not friends with that don't get it, though there too, many of them do. Most know I can only sit on one kind of chair for meetings and yet can't carry it into whatever room we'll be in without throwing out my SI joint. Many people will offer to help me when they seem me trying to push it along. Though again, I can't believe that just as many people don't even offer to help.
Posted By: Michelle70605 Re: Thought I was over this....vent - 07/06/13 08:22 AM
I'm so sorry Jeff.. it just stinks when people don't understand!!! hugss ....and we already have so much to deal with... ohwell ...I'm just so very sorry that happened!!! hugss well just know that you always have us!!!....nothing like our KA family right ?! grin ...big big hugs and so very much love my friend!!!! heart Michelle
Posted By: naj Re: Thought I was over this....vent - 07/06/13 04:48 PM
Oh my gosh, that sounded horribly difficult. I'm glad it is over for you. It can take just a few people to turn what is supposed to be a fun event into one where you feel unhappy. Chronic illness can be isolating in so many ways, and one of them is dealing with people's weird and uncaring attitudes.
Just heard on the radio a brief part of a conversation about how people are so profoundly uncomfortable with illness of any kinds that they react in ways that are all about them, protecting themselves from the anxiety that the idea brings up in them.
I think picking and choosing what events to attend and how long to stay can be a wise thing if that would make you have less stress and discomfort.
It's good to vent, we got your back, friend.
Posted By: avonldy Re: Thought I was over this....vent - 07/07/13 12:02 AM
I don't go anywhere without my thick foam pillow. If anyone questions me, I tell them I have a bad back. I try to find a chair that will not hurt too much and I do try to move about every once in a while to keep from stiffening up. So far, I have never had a problem at any get-to-gather. Of course, it gets easier as we get older. My only problem is that there are several in our family that are more worse off than I am. When that happens, they get the best seats.
Posted By: Pea Re: Thought I was over this....vent - 07/07/13 03:38 AM
Those pies would have come in handy wouldn't they have so you could have put both in dudes face. You should have popped him back and said "fine and you"! I want to find him and pop him hard, well hard for my little fist! Some people just look for people to kick around. Should have showed him how you KickA...! Now look I am all scrappy! I hate mean people.

Hang in there. I don't know if I would hang with the same group even if it is family! Who needs it.
Posted By: elmerfudd Re: Thought I was over this....vent - 07/07/13 05:45 AM
I would have drilled him with a punch right where it hurts the most. And dropped him to his knees....just sayin.
There is always a next time...
Posted By: elmerfudd Re: Thought I was over this....vent - 07/07/13 05:51 AM
P.S. I laughed when I saw the pictures of the pies Inky. I haven't been on here in a while. Hope everone is still alive too. That would be a good thing.
Posted By: elmerfudd Re: Thought I was over this....vent - 07/07/13 06:11 AM
P.S. After he is down I would quickly point out to him he is only experiencing localized nerve pain. If he comes up swingin hit him in the same spot and explain the difference of chronic reoccurring nerve pain....what a bummer.
Disclaimer _ he gets up after a third lesson your gonna get your butt kicked, so make it real the first time.
Posted By: inkyfingers Re: Thought I was over this....vent - 07/07/13 08:55 AM
Originally Posted By: elmerfudd
P.S. After he is down I would quickly point out to him he is only experiencing localized nerve pain. If he comes up swingin hit him in the same spot and explain the difference of chronic reoccurring nerve pain....what a bummer.
Disclaimer _ he gets up after a third lesson your gonna get your butt kicked, so make it real the first time.


floor floor floor

Had the visuals for that little scenario happenin' inside my head, Elmer!

My only other suggestion would be :If he gets up after Strike #3 : RUUUUUUUUUUUUUUUUUUN ! laugh

( P.S. : Elmer, How is your cousin with the GBS recovering???

I worked last weekend in the PICU and saw a little 9.5 yo girl - poor little mite had had it for the *second* time - first time she was 5..... she was sooo scared as it was worse this time. Can't figure the odds on getting it twice.... frown )
Posted By: ilbcrzn Re: Thought I was over this....vent - 07/07/13 04:51 PM
Thank you all,


All of you are the only ones who understand. Yeah if anyone of them would go through what I go through in a day that is all you would hear I think when our pain levels are up, we have more trouble experiencing situations like that.. mad

Thank you for all the pies, they were all delish!!! grin

I am still thinking I will be avoiding all family functions, I put up with a lot more pain to go to one...it is not worth it. frown

I have read all your posts several times and it makes me realize what great friends I have here. I am really lucky. Elmer OMG you really made me laugh. laugh That scene played out in my head like a movie, the script was awesome. In the end as he is laying on the floor, I shake my head and call him a wuss. floor floor floor

Work is going well, my boss is really understanding and that makes it a lot easier.

Thanks again for the understanding, laughs and pies. smile
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