I've been asked to write an article about RLS and relationships (holy cow!). This includes both primary relationships with a partner or close family members. Although I have had experiences for worse (lost a relationship) and for better (this time my partner is strong and is my ally), I am looking for specific information from you. Becat has offered how she used her letter to her husband to create a new level of understanding. Nadia is going through a difficult period - how much has RLS had to do with it?. Penguin, you've made no bones that your ex and his family did not make it easy for you. Jannie, I think you haven't always felt supported or understood. Many others have noted that friends, co-workers or bosses haven't understood. Have any of you also had problems with your family?
If you can offer anything that will help family or people in relationships better work together, understand, communicate, etc. about this, please do. The more understanding I have of what each of you have gone through and any solutions you've found the better I can help those that read the article.
Thanks ever so much,
Ann
(or should I say written by, A. E. Battenfield)
As soon as I get some time to myself, I will write to you about this. YES, RLS has definitely had an impact on my marriage (or what's left of it!)
Talk soon!
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!!!
Either way, Laurie. Which ever is comfortable for you. I wouldn't use anyone's names in the article, but some people might not want to post their experience here.
Relationships with friends, co-workers and career: gone
The severity of my condition has literally destroyed any real quality of life I have ever known. My oldest son, 25 years old, who lives 2 hours away, is completely supporting me and maintaining my residence. He can hardly support himself and the strain is affecting our previously awesome relationship. The strain on him is affecting his job and girlfriend. My sister, who lives 5 minutes from me, gets me out of the house once a week in the summer, not at all in the winter, and has been to my house MAYBE 5 times in the past year. Apparently, watching my health deteriorate is more than she can handle, though she encouraged me to move here last year and tries. I have no career and no other friends. I'm adjusting when I am not, accepting when I cannot, and learning when I do not want to live with these changes in my life. I must keep counting any blessings I can find in this nightmare, no matter how small and I will get dressed today, maybe.
Kimberly, that sounds so difficult. Thank you for sharing it with us. I know you posted about disability also, and with fibro and chronic fatigue, your life must be especially difficult. Especially as Cobra has now run out. Many drug companies offer assistance to people that can't pay (you may already know), so if you haven't tried, that might at least help with the meds.
You sound like you are still strong and still fighting, even through this adversity. My thoughts are with you and your family that you find a way to stay together as you work through this.
Well, my husband is just being a total pain tonight. Normally he is pretty sweet, but he resents my not working I think. I always made more than he did and he liked the money. I just cannot work.
Then whenever he gets a bee in his bonnet, like he did at work today, he tends to blame me for keeping him up - even though he couldn't sleep if I wasn't even HERE because he is worrying he won't get a promotion at work that he really wants.
Tonight it was really bugging me, so I wasn't sleeping, but my foot was hurting (I've got mononeuropathy and a bone problem in one of my feet) and I really DID want to stay in the bed if I could but he threw me out because I wouldn't be still. He said I "was doing it just to piss him off." I wasn't! He said "I'm not buying that, the mirapex seems to be a good thing for you, you just want to piss me off and keep me awake all night and I can't sleep until 10 like you two" (me and our son.)
SO - there is you a real life example of everyday stress that it can put on people. If I wasn't used to him being such a jerk when his job gets to him, I'd probably be in tears. He was pretty mean.
Sorry to hear the trouble your going through. We all know to some degree the hurt we feel when a "supportive" spouse doesn't seem to get it when your not feeling well that day or night. My ex basically quit work because she was having a bad time with her late fathers death and proceeded to let me do all work while she pretty much laid around and spent our money. She started a home cleaning business and then got mad because she said I wasn't supporting her in her career by not helping her hand out flyers when I wasn't slinging 2 tons of apples off my shoulders everyday during picking season. At the time I didn't know I had RLS but I knew there was something wrong with me since I was born but no doctor could figure it out. Mostly because I thought that this was who I was and this was the way life was supposed to be so I didn't fight it.lol But for someone to say I wasn't doing enough when I was doing more than I could got me mad. Years later she finally understood what I'd done for us, but by then it was waaaay too late. Oh well, RLS or not I'm a good person and try my hardest, if that's not enough for someone then too bad for them.lol I found someone who will support me and love me no matter what, so for for those with RLS true love is possible, its just finding someone with an open heart as well as an open mind.
Peace
Ian
I call my pacing the "Waltz of the Damned". Anyone care to dance...?
I've finished my outline and have started writing. I need to have this done shortly, so if anyone else has anything to offer, please do. Intimacy and relationship problems are not issues that many of us talk about, yet I am guessing that both have affected all of us at one time or another.
I want to make sure I accurately represent the voice of those of us with RLS when I write this. By hearing your stories, I hope to be able to better do that. This is an incredible opportunity to reach many people, both those with RLS and the people that care about them. I don't want to squander it with a myopic view.
My current outline includes both the difficulties that RLS can create for us and strategies we can employ to help prevent large-scale problems from occurring, like divorce or excessively strained relationships with our family. I have read information written for people with other chronic disorders and diseases to give me a well-rounded view of the whole subject. But I also need more specific information and am hoping that some of you will be willing to share your experiences with em. For example, what types of problems does RLS cause you and what have your done in your relationships that helped bridge a gap, solved a problem, or prevented problems from occurring. Maybe you found a way to explain RLS to your skeptical family that allowed them to see your experience in a new way. Or you were able to communicate your true difficulties and feelings to your spouse, allowing him or her to finally know what you were going through.
I would not use any information without consent, and would change names if any specific stories were shared that I wanted to use in the piece. This will be but a small section in a chapter called Coping with RLS and is part of new book being written by an RLS specialist (about which I am not at liberty to say much, but will be able to once it goes to print). The book will go to the editor in September, so I only have a week or two to finish what I am working on and send it to the primary author.
Hi Ann,
I've really thought about this..........
BTW, a huge Thank you for helping our community......All of US. I'm sure it will be great.
My thoughts come down to this:
I never realized how much of the RLS truth I lived I hid from those that really cared about me. I'm sure many people thought I was angry, hurt, or just a mean person when I felt bad......
Until I learned to share how I felt, how could anyone know. I know that it's babysteps to learn to talk about it. It's hard knowing the other person might be a non believer, but the truth is better than questions answered by guessing.
It's a trust issue for many. Those of us that have others that think we like to feel ill. Those that think we enjoy an illness. Those that have no idea how far RLS can take a person. It's a lonely disorder unless you know ohters understand.
We've learned to not compare our pain or symptoms to others. I honest don't think many people understand that comparing is useless. No one lives in your body, how could they judge your level of discomfort.
What a person with RLS needs is empathy, trust to share, and an understanding that a loved one's loyalties are intact. In sickness or in health.
It's frustrating for anyone to watch someone they love suffer. My reaction is to do anything to fix it. We can't fix ourselves, docs have a hard time. Even as hard as they work to help us, it's no easy task. There is no bandage for RLS, thus giving our spouse or partners, etc. little to offer to help. To be actively apart of the positive treatment. At least it might appear that way.
When we learn to talk about RLS we give those that love us the chance to say "I'd fix it if I could." Maybe just knowing the facts gives them the chance to make something easier for us. Support us. Go to a doctor's appt. to back us up.
I'm sure my husband has had many strange thoughts about who I was turning into, how I felt about him, what I was thinking....but when I learned to NOT hide my RLS and share with him. I gave him permission to ask questions and get answers, if I had them. He didn't have to wonder about it or make up his own conclusions.
Sorry for being long winded, hope it counts for something.
Hugs to all.
Help Ann Out if you've got something to say. She's right, it's for all of us.
I'm sorry I haven't answered you before now. BUT, now is the perfect time. AND, like I seem to do everything else, I'm going to answer publically.
I've shared this with Becat. So, this will be no surprise to her. I don't know if I will share everything, but here goes.
Yes, Ann, you and I have talked about the support I HAVE NOT received from my family. I'm going to try to say this as fairly as I can.
I have a good family--a loving family--BUT, I have a family who wants me to be "happy" Jannie. Well, that's a little difficult when I haven't slept for 20 some years. My family "knows" I don't sleep, but they don't "know". To be fair, my husband has walked the floor with me. He's tried to make me comfortable. He's called my neurologist time and time again. But he gets weary. And he gives up. My daughters and son grew up and left home. They have their own lives.
We just got back from vacation with our 28 year old daughters--a gift from them. While on vacation, I had a talk with them about my pain and a new diagnosis--rheumatoid arthritis. It seems I talk too much about it, I'm mad all the time, and they don't like the new me. I was heartbroken. All of this was tempered with "I love you", of course. Please keep in mind that my family is wonderful.
Then, I talked with my good friend, Becat. She reminded me that they could not possibly know how I felt. That, although they were, perhaps, insensitive, they DID love me, and that RLS is hard on EVERYONE!
RLS affects everyone in a family or relationship, not just the person who has it. Even if you SHARE how you feel, sometimes the people you love aren't CAPABLE of supporting you for the long haul. I suppose I have to learn that it doesn't mean they don't love you. My husband has looked at me with pain in his eyes and said he wished he could help. He told me perhaps his not wanting to hear about my pain was his form of denial. I don't know.
RLS is hard on everyone. I cringe when I hear someone say "Oh, you JUST HAVE RLS." It's an horrible life we lead. Thank you, Ann.
I knew I could count on this groups to give me some wonderful information. You are helping me to write a better section for this book, but along the way you are all helping everyone else, too. I'd hazard a guess that by writing and thinking about this, we all end up helping ourselves, too.
I've also gotten some good private emails from the Yahoo group. I hope to start writing this weekend. I have done some preliminary work, but now need to actually start the process of getting all my thoughts on paper.
Thank you all. If anyone else wants to share, privately or publicly, please do. I won't be start for a few more days, and I won't finish for about 2 weeks.
I'm still hiding. No one will ever care so I need to care about myself. That's hard for me to do as I never think of myself first.
My daughter some what understands, but mostly it's the fear of seeing her mom in pain.
I'm hiding again. People either don't get it or they refuse to understand it. I'm still making the whole thing up. I'm still in hiding. My mom and dad seem to be "hip" to the whole thing, mainly cuz Mom "gave" this to me and Dad wishes he could have and take the pain away from Mom. But, I still am in hiding and will remain so.
