Hello Everyone! I am new to this Forum, but now, I see that I am not "alone"!

I too, have experienced the very same things like not answering the phone, not wanting to socialize, etc.

The thing that has been most dissapointing to me, is the issue of "non-reciprocal" behavior from people who I "thought" were my friends.

Before I got injured and devloped RSD, I literally knocked myself out helping these people with every kind of issue imaginable.

After I developed the RSD, most of my friends, including my long-term boyfriend of over 9 years, were initially very supportive and quite helpful in many ways. UNTIL the realization "hit" that the RSD was not a "temporary" condition, and would likely be PERMANENT.

What a change in their behavior--from outright emotional and verbal abuse, sensing that I was more vulnerable and "defenseless", to BLAME, i.e.--"you aren't trying hard enough to get better", then back-tracking when I TRIED to do be more active, only to suffer a flare-up, by them saying "why do you keep doing that when you KNOW that your arms aren't the same anymore".

Totally a no-win situation!

Frankly, I think our condition brings up buried issues that these "friends" don't have the guts to face. They either gradually fade out of lives, because they feel that we are no longer of "use" to THEM, or, they simply abruptly ABANDON us, like we never really existed at all--because they probably view our needs as INCONVENIENT to THEM. We are not afforded "good credit" for all the wonderful things that we did FOR THEM in the past, when THEY needed our help, friendship and emotional support.

It is no wonder to me, that after having been ABANDONED, that we don't trust people anymore. Why would we want to go through that again?

I would like to believe that there still are kind, compassionate people out in the world, who do not judge us by our physical appearance or the "invisible suffering" that RSD subjects us to. People who UNDERSTAND that at times, we are just too exhausted to participate in "life" for a while. People who RESPECT us, and ADMIRE us for all the challenges and hurdles that we have had to overcome, and who hopefully, will find us as an "inspiration".

After what we have gone through, and will CONTINUE to go through, we DESERVE that!

For now, I still struggle with the thought of exposing myself to potentially inconsiderate people--and yes, thank goodness for caller ID! And, Forums such as this. Somehow, I need to find the self-confidence that I once had so that I CAN resume inviting new people into my life. For me, this is the REAL challenge of RSD...

Ya know, At first I thought this thread was about whether or not it HURT to talk on the phone...and yeah, since my rsd is in my hands, it DOES. My hands fall asleep, and my hair touching my hands hurts. But then I read that it's ot about that...it's about not even wanting to talk on the phone. And it's funny....cuz I HATE the phone. And my SO is constantly trying to get me on it! It drives me crazy. I always say between him and my son, the phone isn't available most of hte time anyway, so it's not a big deal. But like...if he wants to call and check on his mom he'll try and get ME to call. Or f it's a holiday he'll try to get ME to call to find out what we're to bring. And I fight him, trying to get HIM to call cuz I hate the phone. And his family will keep you on the phone for HOURS while I'm wiggling in my seat trying to find a way to get off the phone. And no matter how many times you say, "Okay, well, I better go now..." they STILL find a way to keep you on. I aks you - if you are talking to someone and they say they have to go, don't you allow them to hang up? I DO! Why dont they???? ?That's why when he phone rings, I don't even look at it. I'll be downstairs in the kitchen, and the phone IN THE KITCHEN will ring. My son will run from UPSTAIRS in his room ALL THE WAY DOWSTAIRS before the third ring finishes. he has to make sure he answers.

I HATE THE PHONE Grrr! LOL!

Thank you SO MUCH for letting me know I'm not weird!

Hi,

I hate the phone too - but it's more from the effort involved in talking and sometimes the bitterness of what my friends are up to that I can't do.

However, when talking about mates, I have been so lucky. My friends are the awesomest. Many of them are friends I have made since getting RSD (Although I have continued to be friends with a couple of people from my pre RSD life). They have accepted the deterioation in my condition and been happy to take over large chunks of caring, to lift, feed, dress or throw me around. They try and include me in everything and they just let me be me... They are brill when my sister is evil and has a temper tantrum whilst getting me dressed and leaves me either in my PJS on the floor (after dropping me) or takes my top off and then storms off.. (Before we moved our house had 4 flights of stairs and my bedroom was at the top, so I had to be carried up and down stairs by mum, mates or my sister - this was also pre carers)... my mates, (Lyd or Nik especially) would drop everything and drive over to mine to give me a hand...

I know I have been so lucky with my mates - they are REALLY brilliant and I feel so blessed to have them. However, I can empathise with the attitude some people have towards this - especailly from my sister who is just... horrible...and totally attention seekingetc. (I suppose that's why she wants to be in the eurovision song contest - and I swear listening to her songs are an abuse of sorts!)

Anyway - I have to agree that sometimes using a phone is so exhausting that I choose not to...

Love

FRxxxxxxx

My hubby does not avoid the phone but it really bugs him when he's resting/napping after therapy and people call and disturb him or wake him up.

He does have a headset for our phone so when people call he does not have to hold it to his ear. That way his arms dont ache.

Wow! This thread really has shown just how much we are affected negatively by the insensitivity of others. Only a couple of you mentioned calls from long time friends you hadn't heard from. Most everyone of us talked about the same issues. People who know our situations well but continue to be insensitive to us.

I wonder why that is. Is it their struggle to understand? Ignorance? Innocence to the situation or what? I know personally that the people who seem to bother me the most wether by phone or by unannounced visits are the ones that really don't seem to care about what I am dealing with, rather they are just looking to fill their own curiosity plates so to speak.

I fell like hanging a big sign on my house say "Leave Me To H*** Alone" and putting a message on my phone machine saying that unless you are Publisher's Clearing House or my Doctor "I'm Unavailable".

But than again like Condor said - "I have good days and not so good days. On the good days, I feel like talking and going out for awhile." But that should be at our convenience. Rather than get the ole attitude from them "Oh Now You Feel Like Talking". or Now You Feel Like Visiting".

Well that's my story and I'm sticking to it. Chin Up Everyone!

Mark

Your right Mark this is verrrry interesting. Sometimes I even dont answer emails, for the same reason I dont answer the phone.

I did put a sign on my door........with 4 sisters, 1 brother, and 6 kids, 10 nieces and nephews, my door is like a revovling door. I mean I love my family and all, but everyday there is someone here, and when I tell them to give me a break.................they look at me with horror in their eyes and say " I only showed up once this week"

They just dont hear me! I think everyone only cares about their own agenda.

Half of them dont have washers and dryers......figure that one out. I finally sold my car that sat out in the drive broke down for a year. Anyone offer to help me fix it?? Nope! Even though when they didnt have a car mine was their car.

Man Stephen I hear ya about TV! I pretty much have it down to 2 shows a week, and the rest of the time Im mmorpg'ing lol. I just sit in one spot and chat with peeps, maybe throw a few buffs, sell some crafted items. When I feel good than I go tackle some dungeons, or bases with the guild

My character made about 160 million credits this year.....sure wish I could make that in real cash on the internet. Man the internet is just one scam after another

/rant off

LOL, Hope everyone gets a few of those good days real soon!

Oh boy - Hear ya there! Ours is on it's last leg - I'm working as a waitress and had my hours cut by 1/2 because of lack of business in a small tourist town and hubby has nothing coming in cuz w/c don't give a rip (although we FINALLY have a hearing date)...Have to get to work to pay the bills yet no one wants to give a hand even trying to help fix it - Not asking for a new one - just a little help from those who are "knowledgeable" in that area. No time for that tho - but plenty of time to ring our phone off the hook to ask questions that they really dont want the answers to anyways.....*sigh*