Dealing with tuff love and people with RLS

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
James333
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Dealing with tuff love and people with RLS

Postby James333 » Tue Dec 02, 2008 7:12 am

Over Thanksgiving I had dinner with a family friend of mine I have know
my entire life. Since the begging of this year my RLS has forced me to file for disability because it has become devastating. After a few drinks ( I am not a drinker) I explained about my disability case and were I stood and I told her I have to go before a judge with my Lawyer. She said "you are a scammer" I can respect and understand her opinion and pray to god I am a scammer and my RLS is not real at all and nothing is happening. I have tuff family who do not understand how devastating RLS can be. I recently visited my father who was in the military in Arizona and I could not get out of bed in the morning due to insomnia and pain in my legs! He gave me tuff love and pulled the blanket off my bed and said "OH B---S---" Its OK I love him and I know where he is comming from but sometimes enough is enough


My question from this posting or topic for it is how do you say enough is enough to someone who cares for you? I have no girlfriend, wife, job, and very very little life from my bad health (RLS the #1 offender)). I am a smart person but I would not wish the level of RLS that I have on anyone its nothing to want most people would give up. Its super bad and has taken away so so much!

In the new year I am going to try to re enter the work world again but still fight for my life with my SSDI/SSI (disability) and RLS. I am a tuff fighter and will never give up even if I go down I will go down fighting
The meds I take now work but I take strong amounts of restoril and mirapex plus advil PM sometimes. I may have a chance at working again.


I guess some people just think they can be the judge of everything and think there MDs. I have experienced simular judgement not just from family friends who have had a few drinks but true friends who care about me and want the old James back. Its tuff but how do you deal with this stuff ?? I feel like I need to be prepared for war!! I have not had an attack for over 5 weeks but I have been taking more then whats prescribed by my neurologist and primary doctor. It works I get sleep but I black out hard core.at night( self medication). I know I need to take everything as prescribed but my RLS has made me crazy and I can not think straight.

PS- The reginol meeting in SF was fantastic thanks to everyone who put it on it could have not been better!!

:?: :roll:
Everyone needs to know Willis Ekboms disease

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Neco
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Postby Neco » Tue Dec 02, 2008 1:27 pm

James,

I live like you a lot. No attachments, and although I can now function with my medication I can't find work to save my life, as well as other random health problems. I don't know what I would do if my family didn't believe me. My family hasn't 100% been there, but every time they get more info from me or read about something, it always shores up their supportiveness. My dad is now involved in the management of my painkillers as a result of this. Which made me feel good in a weird way, but that's another road of stories.

Sometimes I get a little tough love from my brother, but I can't think I've ever had someone tell me I'm a scammer or anything close to that, except one prick psychiatrist who told me Tramadol (which I was on at the time) is not a treatment for RLS and I was a drug seeker, simply because I came to the country looking for help about getting some methadone to get me off these other painkillers I had gone through and could no longer handle. Well he didn't even tell ME, I got the message through my at the time counselor; ugh.

Sometimes when people won't play ball, you need to draw a line in the sand. I know this may sound extreme, but it sounds like these people need to be told to their face, to accept you for who you are, or get out of your life. I know that would be a particular hard thing to say to lifetime friends and especially family, and I am not telling you to run out and do this, it's just a thought ya?

Sometimes the threat is all it takes to at least make people leave you alone about it. I guess as far as your friend goes, it is important in the way that they said it to you.. Was it in a joking matter or did they stop their little party and get all serious and talk down to you? Something to think about too I suppose, but if they were being derrogatory and something like that just came out, I'd question how much they really do care about you, alcohol or not. The only way to tell is to corner them sober and demand an explanation.

I've got to run at the moment, but my last bit of advice is to possibly seek counseling. People treating you like this is not only bad, it's bad for your mental health. You may need someone to talk to.

We will always give you loads of support and I'm sure many people have good ideas about how to possibly explain RLS to your friends and family that don't "get it".. Google "The Spoon Theory". It's a really good story and may help you communicate your problem better to your loved ones.

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sardsy75
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Postby sardsy75 » Tue Dec 02, 2008 1:40 pm

Hey James

Welcome to the place where everyone DOES understand most of what you're going through.

The "signature" under my name pretty much sums up where you are right now ... "My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!"
I've accidentally on purpose "lost" several name and numbers of people who said they "cared about what i'm going through" ... what a crock of crap!

Keep on keepin on mate

One step at a time, one day at a time
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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chefws
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Postby chefws » Tue Dec 02, 2008 4:03 pm

I can relate to those posts. Only my wife understands it, but she hates it and really doesn't want to hear about it. I used to be a work-a-holic, working 12-14 hour days, 6 days a week, running around a kitchen. I then had my own business which I had to put a temendous amount of effort into. After I couldn't keep up with the business, I went back to being a chef. I was on the fast track at the company for a major promotion when my med was pulled by the FDA (Permax) I went to Mirapex which caused extreme insomnia and leg pain. During that time, I couldn't perform at work, and was on the verge of being fired before I took the Family Medical Leave Act.
My Father-In-Law has RLS, but it is mild and has no pain associated with it, so he is very un-sympothetic, and thinks I'm crazy. We don't talk anymore, but at a funeral of a mutual friend, he came over and wispered to me that he sure hopes I get my mind together. He thinks it's all in my head. But so does my PCP.
Oh, well, such is life. :)
What I say is only what I have experienced with this horrible disorder. Everyone reacts differently to different treatments. Research, Research, Research! And may God bless you with an understanding and knowlegable doctor.

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Postby Polar Bear » Tue Dec 02, 2008 6:49 pm

Hi Chef and James

I feel so angry that people would speak to you like this. I have never had anyone do so.... don't know what I'd do if they did.

As Zach says, I suppose it does depend what tone was used to say the words, but even so...........

We are with you on this.
Betty
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Betty/WV
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Mean people

Postby Betty/WV » Tue Dec 02, 2008 8:03 pm

Hi James: I feel so bad for the experience you had, a friend calling you a scammer. :x I totally understand your position. I know my friends and family don't understand what I am dealing with. The RLS takes away our quality of life. If we said we had cancer or a bad heart etc. they would feel different. Sometimes I feel so helpless, I don't know whether to trust the doctor. I have been to so many and taken so many different meds. Now I am on Mirapex, but when I read about augmentation that scares the daylights out of me. So far it is working. But for how long and then what???? :roll: I hate this helpless feeling. Hang in there James, I'm trying to, I don't know what else to do. I'm so thankful for this site, because here I can vent and know I'm being understood. Take care. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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Aiken
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Postby Aiken » Wed Dec 03, 2008 2:47 am

I'm frank about it. I tell them what I think, and I tell them what I think of what they think, and if they want to keep thinking it, I tell them where I think they can go.

It's not for them to judge.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

ViewsAskew
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Postby ViewsAskew » Wed Dec 03, 2008 6:16 am

I feel such pain when I read of things like this.

At Turkey Day dinner, my BIL said that nothing other people said bothered him and that he just ignored them if they were rude/mean/whatever.

My nephew said he thought that all of us should be like that. That it was the best way to be in life, to just do your thing and not worry about others, not ascribe anything to what they say, etc.

Huh.

It may be a good thing to aspire to, but we're just not all built that way. Brain chemistry, upbringing, who knows, but some of us just aren't as thick skinned as others.

Try as I try, when someone says something mean to me...it hurts, even if I KNOW that person is a jerk. Should I be different? Well, it sure would be nice. Can I be different? Hmmm, been working on that since I was two years old and wailing and my mom first told me life wasn't fair...it hasn't happened yet. I am MUCH better than I used to be, but I still do get caught up in other people's perceptions and thoughts of me at times.

So, to me, when I hear that someone you love, respect, care for, etc. is saying hurtful things, I can't help but feel empathy. A lot of it. I also realize that there are things we have to do for ourselves is we have any hope of taking the sting out of what they said and any hope of protecting ourselves.

It seems to me that we all have several options. When we can't just let it go, when it hurts, when we "need" that person in our lives, when we really want them to understand...we need to find another way to get our needs met and still stay in that relationship.

I can't speak for anyone else, but it often helps me to start by seeing it from their perspective. Why do they think that? The next thing that helps me is to see if anything in their life is akin to my situation. If it is, maybe I can make an analogy to help them see my situation in a new light. While it's really hard to do when you're emotionally involved, if I can stay neutral and ask them questions about why they feel the way they feel and to find their underlying needs and interests, it can help me to figure out how to better talk to them about it and get them to understand.

Some times I have had to say to someone, "I know you don't get it. I know you don't understand. Let me ask you, do you care for me? Do you respect me?" Then say, " If you do, they I have to ask you to work with me on this. See, I need you and I need you on my side. This is too difficult to do when I am at odds with you. Can and will you do that for me?"

At least I know where I stand at that point. I know how much to put into it. If the answer is, No, I cannot stand by you, then I know I have to stop putting anything else into the relationship, because I'm not getting out what I need. I may not end it, but I know what it is and what I can talk about.

It's been a long, long time since I've had to walk away from someone. I sort of cleared out those people who weren't supportive and have traded them in for people who are. Walking away was one of the hardest things I've had to do. Even harder when they contact you years later and you have to walk away yet again.

But, walking away was necessary at some point. Necessary for my sanity and mental health. This is the only life I get...I don't want to spend it allowing myself to be hurt by other people.
Ann - Take what you need, leave the rest

Managing Your RLS

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becat
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Postby becat » Fri Dec 05, 2008 8:12 pm

My Sweet Baby James,

I'm so sorry that happened.

You know I had to stop talking about RLS to my family some time ago. I expected my friends to be better supporters, but found I was a drag and they only wanted the old Lynne Back. (I think I told you).

They wanted the tequila shooting, staying the latest, happy go lucky, don't say a thing friend. Well, too dang bad, this Lynne tries hard to stay on schedule, does not drink, and can still be just as fun without the stress of non supportive people.

No it sux that the ones you would have been there for or have been every time they needed you, are not so much there for you.
But, my love, that is their loss. Period.

I know you are a sweet, intelligent, charming young man. Good Looking, too! Your no more a scammer than I am, or anyone else here. If you do not live with it or sleep in the same bed with someone who has it, you would never know how it feels. Nor, what it truly does to our lives. That by no means makes it ok (with me) to have to be belittled, crushed, or verbally harmed by those we think we can trust.

When I come across those people in my family or among my friends, I chose to tell them the truth about my life, or nothing at all.

Sorry about Dad, I know that hurt.

James, you did not chose RLS, it chose you. You did not ask for this life style, but can make it happen and do it well. Yes, like me yours is tough.
Tell me that your not tough, you've done this for yrs.......on your own.
My Sweet, I know your heart, mind, and character......you are a prize. A gift.

It hurts us all when those we love act like that. I wish I had some clue what to say to them to make it all just RIGHT, but some people are blessed enough to have nothing in there way or things that people believe in.
That may not be us right now, but you have us.......always will have me and we'll create our lives as we can, as we are, but better, and who we are going to be.

I love you and miss you tons........home all weekend and next week that I know of.......ring me babe!

Hugs and a moon full of love to you.
Lynne

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ctravel12
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Postby ctravel12 » Mon Dec 08, 2008 10:55 pm

Oh James my heart ached when I read your post. How insensitive can people be especially "family". We know what you are going through and like Lynne said "you did not chose RLS it chose you". I would never wish this on my worst enemy and to say that it does have to be bad.

Let someone walk in your shoes for a minute, day, week or whatever and see how fast their attitude changes.

I have some good and bad days and some worse then others. Please whenever you want to vent, talk or whatever we are here for you.

Hang in there my friend.
Charlene
Taking one day at a time

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Rubyslipper
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Postby Rubyslipper » Fri Jan 30, 2009 11:53 pm

I know I'm chiming in late on this but just had to see how you were doing. RLS is such a tough sentence to deal with on many fronts but when family and friends ignore, minimize or dismiss your trials, it just hits way too hard. I guess I am vocal enough about it that my friends accept it and even want to learn about it. My family deals with it themselves to a limited amount.

It shouldn't be so hard but until RLS is given the seriousnes it deserves, most of us will suffer from the uncaring public. At this point, it is up to you what you do about it. I become vocal, get involved, learn all I can about it and tell it to everyone. If nothing else, send in a donation to the Foundation and ear-mark it for education.

Whatever you decide, know that those of us here understand what you are going through and you have our support.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

doety
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and more

Postby doety » Wed Feb 04, 2009 6:35 pm

I don't know what people say about me behind my back -- and I'm thinking I don't want to. For such a long time I (and I know lots and lots of you) didn't want to talk about RLS. We were afraid of being laughed at or not believed, etc. Finally, I vowed to myself that I would explain it when I needed to. I've quit trying to go out to dinner -- it simply doesn't work, but if I forget and get stuck and actually try it -- the RLS comes and sits in my lap. I get up and explain quickly what's going on,then I disappear and meet people outside when they're through (and my husband has my dinner in a go box). Most often, when I tell people what's going on, someone in the group says: I have that, my mother, my cousin, etc. and that makes it okay.
But recently we stayed a week in someone's large, nice home in Arizona. The couple (he used to work for me, didn't know her very well, although she's so gracious) got to see RLS up close. He finally said one day: You act like you're in junior high school. Can't you sit still? Since I'd already tried to explain it to him (and also had turned down going out to dinner, etc.), I just said yes, I'm sure it seems that way.
I'm lucky in that I've been able to mostly rearrange my life -- I work at home so can take a walk when I need to (or simply jump up and down!). For the most part my husband is supportive, but I can see the disappointment on his face when I'm not able to do something, or leave the symphony to go stand on the side, etc. But more and more, I don't care about that. He has ADD and I am almost always supportive, understanding and most of the time, he understands and appreciates that. I figure by this age EVERYBODY HAS SOMETHING and we all have to make accomodations.
I agree with everything that's been said: There's great freedom in walking away from those people who hurt you, who suck your energy out, who don't try to understand you. Life's too short -- and all that.

Of course the actual RLS is bad, it robs us of sleep we need to be healthy and screws up various parts of our lives. I think some of us agree the psychological part is worse. I can't seem to stop myself sometimes from standing in a meeting, being so embarassed that I can't sit down or take part in a discussion. I think about how my husband must feel -- I've written that we had to drive for a couple of days straight and i was trapped in a car. It was hideous. But my sweetie couldn't do a dammed thing except say he was sorry, did I want to stop, etc. I hate that for him. He doesn't want to see me tortured like that.

Yuck. As I keep telling myself: not cancer, not a heart attack,just this huge annoyance that sometimes rules my life.

Take care. Keep the people who love and support you close and let those others do something else!

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SquirmingSusan
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Postby SquirmingSusan » Thu Feb 05, 2009 4:41 am

Take care. Keep the people who love and support you close and let those others do something else!


Amen, Sistah! (But then I'm blessed/cursed with below average caring about what other people think of me. :twisted: )
Susan, squirming Image

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woodsie357
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Postby woodsie357 » Thu Feb 12, 2009 7:57 am

In Feb 2008 I was going to take my own life due to RLS (I do not suggest this for anyone.) I decided that it was time to cut back on everything I could so I could keep on living. I quit my job.

Lucky for me I was supported by my mother-in-law. She is basically the only family I can talk to. My husband has been very mentally ill (since this site is annon. Ill share a bit more then I normally would.) He thought I was Jesus, then he thought he was Jesus, then he thought he was the anti-christ then he thought I was satan, then he thought he was satan, and I was satan's wife.) He had not worked since Feb 2002 (what is it about feburary?) anyway in Sept 2005 I made him apply for disability, which he got easily compared to all the other stories I've heard.

This all happened before my RLS got hugely worse. I supported him, I loved him I held his hand all night long. Honestly if he hadn't gone crazy he wasn't the type of person that would have supported me with RLS. But he knows better due to his own short comings.

So in Feb 2008 when I was going to end my life and then decided to quit my job, and he wasn't working and we had 4 children, it was pretty scary. I applied for disability (very very scared to have looked like a scammer because he was already on disability.) I got denied. I didn't fight it. I didn't have the energy to fight it, my husband didn't have the mental capability of helping with it. So I applaud you so strongly for sticking with it.

In case any of you are depressed by my story Ill tell you the happy part. In June 2008 after I'd been out of work for 4 months he applied for a job. He went through several interviews, they didn't hire him but gave him a contract job. Mind you he hadn't worked in 6 years... The job he got was in computer programming which he had done before he got sick. He worked his **** off. In Sept 2008 they offered him a full time position. We bought our first house. Now if anyone told me in Feb 2008 that in the same year I'd be living in a house and we would be able to put food on the table for our kids I would have told them they were on crack (or whatever the hardest core drug out there was). My point is life can change so fast, it can go down fast and it can go up fast. Just hang in there.

There is nothing wrong with applying for disability. There is nothing wrong with choosing your life over your job.

I think to myself all the time. I'm so glad after this life we will be judged by God and not our neighbors. He knows why we do what we do better then we do. I don't care what religion you are, what ever God you believe in he knows your situation.

Live life. Don't let life live you.
Someone cares about your sleepless nights

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ctravel12
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Postby ctravel12 » Thu Feb 12, 2009 2:06 pm

Oh Woodsie thank you for sharing that with us. I am so sorry for what you had gone through but am happy that your hubby is back working, doing good and that you are doing so much better too.

As far as depression, I can understand. I never went as far as wanting to commit suicide but when I would go to bed at night I said "I do not care if I even wake up the next morning" That had gone on for quite some time. I eventually got some help and do have a supportive husband.

I am doing much better and I have alot of faith and know that between God and all the help that I got I am doing much better.

You hang in there, and again, thanks for sharing that.
Charlene

Taking one day at a time


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