NeuroTalk Support Groups - I'm hating life now

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - I'm hating life now (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/25143-im-hating-life.html)

support is here, and i think everyone answers questions. i think sometimes i read where people just make a statement, and so it is not seen that it needs a reply. i read almost all the posts, and put the 'thanks' on the info ones or the pep talk ones, and i reply if something is something i have dealt with. but as far as support, i don't think i have ever asked a question and not gotten an answer. so keep asking, my friend. joan

Hey I have got to say thank yo all! I have had some issues and they caused a bad flare up but feeling somewhat better NOW. I do not know what I would do without this board thank you for caring.
I had some people who cared less not from this board but in real life, they have given me dirty looks and said some mean things all because I have something and cannot see it. They see me in a wheelchair or parked in handicap but think hey he looks young, and I dont see anything wrong so he is fine and pass judgment on me! and it hurts after awhile, along with the fact I have to say sorry for my spelling cause I am getting dumb from all this, so I type bad with one hand and cannot spell :(
But I thank you ALL! and I care for you all TOO! ready group hug 1-2-3 rrrrr no didnt that feel good? ok we can all let go now.
HUGS
flippn

Hi flipping out...

I know how you feeling when people say mean and horrible things... I am only 21 and i have people say almost on a daily basis.... She looks fine... Its all in my head.. Or she is to young to have pain like she says she does... What i have learned are the people who really mean something to you and you mean something to them will not pass judgement... Its hard and a horrible thing to go through but really it is a learning exprince... I too have a hard time typing.. i think this board is great and that all are here for support... I really hope you have some better days coming your way...

Gental Hugs... :hug: :hug: :hug: :hug:

I agree that we are here for you. It's ok to have bad days and to vent here. We all have them. Please know that I also read the post alot, but sometimes I just go thru periods when I don't have anything important to say. I wish I had answers, but the best I can offer is to listen and not take it personal. Stay with us.
Mary

Hey Flippinout,
I am glad that you are feeling a bit better. I think that we all know about having those times when everything looks so bleak, and we feel so bad. I am sorry that you felt that you weren’t being included here. NO ONE should feel that way...it shouldn’t happen at all. Not to anyone.

I also do a lot of reading here, but not so much posting. Not like I used to anyways. I think that is because I am an old hand at this RSD stuff now, and don’t have so many questions that I need/want answers for anymore. I also think that it is because the treatments that folks are getting done now, are not ones that I know anything about, and so I can’t really comment much on them at all. But, I am still here! Like Joan, I read almost every post when I come to the board. And I do try to post where I think it can be helpful and/or supportive.

I so totally understand what you are talking about, with folks not understanding, and assuming that you are OK because you LOOK ok. That you are “too young” to have the problems that you have. That you shouldn’t be using the wheelchairs or electric carts, let alone the handicapped places. You know what though? They don’t know ANYTHING. That is just folks being judgemental and ignorant....so don’t let it bother you so badly. YOU know what you need. YOU know how you feel, and what you can do, and can’t do. Fart on anyone that tries to tell you otherwise, or that makes you feel badly! LOL

I have been dealing with RSD since I was in my mid-to-late 20's. I just turned 38 this past July. I have heard it all......caught all kinds of crap for being “too young” to have something so bad wrong with me. I know that most of that kind of crap comes from the fact that folks can’t usually see anything wrong with me...just as you have said. But, I have finally gotten to the point that I really don’t care. It isn’t for anyone else to try to tell me how I should feel, or what is or isn’t wrong. I KNOW how I feel...and I know what I should and shouldn’t do...and I refuse to let how others look at me change how I do things. If that makes sense? In other words, I am not going to get myself all worked up because some ignorant, narrow minded folks *think* that I should be better by now, or that I don’t have anything wrong with me, just because they don’t understand, won’t take the time to understand, and don’t have a clue what it is to walk an inch (let alone a mile) in my shoes.

It isn’t right, but folks tend to think that after a certain period of time, we should “be better”. I do think that this comes from not being able to see what is wrong, and not understanding about RSD or other kinds of chronic pain at all. That is why we get the stuff from family and “friends” about milking this just to gt pain meds....or to get some kind of attention...or whatever. You know what I have decided? I have decided that folks that think like that are probably ones that would do such a thing themselves. I mean, why else would they even come up with the idea or notion that a person would do that, if they weren’t capable of doing that same thing themselves? Maybe that is harsh....but that is the conclusion that I have come to. Of course, this is just my opinion about this.

Hard as it is, you have to try to learn to “be a duck” and just let things roll right off of your back, like a duck’s feathers let water roll of it’s back. People will be how they are, and there isn’t anything that we can do to change them. Keep the good, nice, and supportive people in your life, and let the others go....or at least keep them at arm’s distance, so that you don’t get hurt quite so bad. You will run into judgmental people where ever you go. You can’t let them bother you so much. All that does is stress you out, which leads to increased pain levels. None of us need that. YOU don’t need that.

Please please don’t worry about your spelling or typing here, Ok? No one here should ever make you feel badly about that. We ALL have issues with spelling and typing; either from having upper body problems, or even lower body ones (that don’t allow us to sit for long, and cause attention to wander as pain increases), or because of meds that we take...or ALL of those added together. I haven’t had any problems understanding your posts at all. In fact, I got a kick out of your “spider pig” one on another thread. My son goes around here singing Spider Pig now, too. Anyway, please don’t ever worry about typos or bad spelling, and PLEASE don’t let that be something that keeps you from posting when you need or want to. Ok?

I know that lots of my posts get skipped over because they tend to be “too long”. I figure that is other folk’s loss, because some times I DO have some helpful information, advice, or support in my long posts! LOL. I just seem to type like I talk (a lot! LOL), and it doesn’t seem that is going to change. But, because I know that I write long posts.....I can see that this one is getting (or already is! LOL) pretty long. So.....I am going to wind this up here. I just wanted to let you know that I am glad that you are here with us. I am glad that you are feeling better. I hope that you keep posting....and PLEASE don’t let those yucky judgmental people get you down too much. Ok?

Take care. :hug:
Jose

You aren't alone flippinout. I have 3 "invisible" disabilities/conditions. I have 1 sister who is maybe just getting tired of my excuses as to why I can't. Well, for me anyway, such is life. I always say that my conditions aren't as bad as all of yours, but boy do I have my days.

Hang in there sweetie. People say things and it's up to us whether or not we want to let it get to us. Once they have walked a mile in your shoes it will entitle them to judge you, and not before. Some people have no tact, no compassion, and NO social graces.

Do what you can, when you can, and if people are insensitive to that, maybe they are replaceable in your daily life.

Hugs and Prayers

I used to get offended by what people say and think, but now i just take it from the source .... I believe even my husband doubts me and thinks i could do more, in fact he has said so, but you know what? i know i do all i can do and so too bad for them all. God and i know and no one else matters.
joan

Hi Flipnout!
I am truly thankful that you came back on! Your a special part of this group and we do care! As for people who laugh and call you names, their the ones with the problem, NOT you! People even laugh at heavy, thin people who wear odd clothes, hair, etc. To me, this is so wrong. But to laugh at someone in a wheelchair, sick, can't hardly walk, well they need a good whippin' in the wood shed is all!! As for your spelling.. I make so many mistakes in this as well. Remember;"To err is human, to forgive is divine"(I don't even know if this quote is right??) LOL love and Hugs to you, my friend!! Desi

Happy your back. Forget the spelling. We all have trouble with that. Iam always checking what I wrote, it takes me forever.

Sue K.

Stay strong. It's all we have left.

I'm rarely very chatty but always respond to direct questions or statements.

People in our condition definitely need a hobby or something. It's easy to get bored when there's little we feel up to doing.