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?
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SquirmingSusan
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Postby SquirmingSusan » Sat Feb 14, 2009 3:52 am

Wow, Woodsie. What a difficult, yet amazing, journey you've been on. Life can truly be hard, can't it? I'm glad things have been better for you lately.

Speaking of faith - have you ever read "The Shack"? I was a bit skeptical of the book after reading review, but I really enjoyed it, and the theology behind it seemed pretty sound, at least from a liberal Christian perspective. I suppose those of other faiths might be put off by it, but it is very universalistic in tone. But through the book God, who has taken on the form of a woman who loves to cook, keeps saying, whenever someone's name is mentioned, "that one is very special to me." Of course, she says that about everyone. Anyway, it deals with the age-old question of suffering, and it does a pretty good job.
Susan

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woodsie357
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Postby woodsie357 » Sat Feb 14, 2009 6:48 am

I've been searching for a book to read. I'm going to have to check this one out... I love that she says "this one is special to me" =)
Someone cares about your sleepless nights

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SquirmingSusan
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Postby SquirmingSusan » Sat Feb 14, 2009 5:40 pm

I know I have the wording wrong on that; my memory, ya know. I know it's something like "I'm especially fond of him/her." I have it on audio book, so I can't just open the book and look...
Susan

James333
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Postby James333 » Wed Feb 25, 2009 8:35 pm

Thanks everyone for your great support and feedback on this thread I appreciate it. My RLS is a little better this year so far in 2009. I am trying to focus and think about other things in my life. When I think about my RLS I just get depressed but I suppose that’s normal.

James
Everyone needs to know Willis Ekboms disease

debbluebird
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Re: Dealing with tuff love and people with RLS

Postby debbluebird » Thu May 24, 2012 1:34 am

I am so glad I found this site. I have been going crazy. I didn't realize that there were so many people just like me. In Jan 2011 I got fired. I am an RN I was very good at my job, but that all went away. I was loosing my memory. That is mostly what caused me to loose my job. I didn't know what was happening to me. They had me on so many meds, I was a zombie. My husband watched my legs jump a foot above the bed. He said he wouldn't have believed it, but he witnessed it. There were many times that I didn't want to continue living. Luckily my husband has been very supportive. My memory still seems to be getting worse. I applied for disablity and got it, July 2011. Thank goodness for that. We lost our house, had to sell everything, and started living in our 5th wheel trailer. We are surviving. For the last month I have been having another major flare up. So I am again very exhausted. Many a night of walking and crying.

rthom
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Re: Dealing with tuff love and people with RLS

Postby rthom » Thu May 24, 2012 3:59 am

You are having such a rough time of it I was wondering if your methadone isn't working anymore or what you think is making it so hard now. Appart from the olbvious tremendous stress you are going through.

Betty/WV
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Re: Dealing with tuff love and people with RLS

Postby Betty/WV » Thu May 24, 2012 6:04 am

debbluebird: So sorry you are dealing with so much Sounds typical for RLS/WED victims. This site has helped me so much too. I was ready to give up when I stumbled on this site. I was crying walking the floor and standing up at the computer found this site. It has helped me very much. I am on Miraex and it helps about 90 % of the time. i still have bad times. Not a normal person. Memory is also very bad. You said you have many a night walking the floor, I did too. The only relief I could get was sitting in a bath tub with hot water.

Wish you better times. Prayer helps too.

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

badnights
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Re: Dealing with tuff love and people with RLS

Postby badnights » Sun May 27, 2012 5:30 am

I had not seen this thread before. Thanks for reviving it! It is striking SOOO close to home. I don't know how I am going to survive. I am so much LESS. I am failing and losing and I can see why people get tired of fighting all the time

and nobody knows, except you guys
and maybe my mother who is far away and has so many problems of her own

and I can't have a normal life and I'm always alone

geez feeling sorry for myself tonight,.\haha
Beth - Wishing you all restful sleep tonight
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Betty/WV
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Re: Dealing with tuff love and people with RLS

Postby Betty/WV » Sun May 27, 2012 10:30 am

Oh, badnights, I understand completely. Sometimes (most of the time) I feel so not normal. I feel like I'm losing on all sides. Miserable. My RLS/WED is better but my sleep is terrible. And I am tired of fighting, everything. The RLS/WEd, my sleep, my family problems, all my other medical problems, MY WEIGHT. Now I have very painful tendonitis. Had to go to the ER. And I don't mean to sound like "oh poor little me". Just stating the facts. No, body really cares what is happening to me. So I try not to complain. For instance, my granddaughter visited, said how did it go at the ER, so I started telling her and she walked out of the room in the middle of my sentence. I wish I could just stay in the house and not go anywhere or see anyone. Then I think, well, maybe I'm the same way. Maybe I don't pay enough attention to ones who are miserable, for whatever reason. One day at a time, is all I can do.
What would I do if I didn't have this place to come and vent. No one else wants to hear what is going on with me. So, badnights, I guess we all just have to hang in there together. We all know what it feels like.

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

Polar Bear
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Re: Dealing with tuff love and people with RLS

Postby Polar Bear » Sun May 27, 2012 1:07 pm

Betty/WV - I am so sorry you were hurt by your granddaughter's actions.
They were indeed thoughtless and I wonder if perhaps
she doesn't realise just how her actions came across.
Is your relationship such that you could speak to her about it.
However, I tell myself 'we can't put an old head on young shoulders'.
Betty
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Betty/WV
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Re: Dealing with tuff love and people with RLS

Postby Betty/WV » Sun May 27, 2012 8:13 pm

PolarBear:I'm sure she didn't mean to hurt my feelings. I just think as you get older, no one understands your aches and pains.
I could mention it to her, but I won't. And what you said is so true, I'll remember that, "you can't put an old head on young shoulders".
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

Polar Bear
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Re: Dealing with tuff love and people with RLS

Postby Polar Bear » Sun May 27, 2012 9:48 pm

Betty/WV - :thumbup:
Betty
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badnights
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Re: Dealing with tuff love and people with RLS

Postby badnights » Mon May 28, 2012 3:49 am

Then I think, well, maybe I'm the same way. Maybe I don't pay enough attention to ones who are miserable, for whatever reason.
Betty/wv. That's a good reminder, that paying attention to others takes our minds off ourselves. It seems to change everything, even tho all it's really changing is our focus, our mental state. We can't change other people and make them more considerate of us! but we can be considerate of others. Who knows which ones are holding their own sorrows while seeming to be normal.

I must admit, I'm not very good at reaching out, and not very good at social interactions. But I do realize that getting out and doing things socially is another way to get our minds off ourselves. Do you still play cards with those other ladies?
Beth - Wishing you all restful sleep tonight
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rthom
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Re: Dealing with tuff love and people with RLS

Postby rthom » Mon May 28, 2012 4:02 am

Badnights and Betty/wv
I've spent almost a day now trying to find a train of thought for you both. You are both important to me and anything i thought about seemed inadequate or just wrong. Often i ended up thinking of something and finding it sounding like i was making the conversation about myself instead of you, but then it dawned on me that the reason i was having trouble figuring it out was because of the cognitive problems i've been having trouble with again and maybe it's just as well to let you know that I get it and my silence was because I care enough to take the time to try to get it right. But that the best i can offer is letting you both know i care and have been wrestling with the same questions. I'm sorry you are both having it tough right now. :roll:

badnights
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Re: Dealing with tuff love and people with RLS

Postby badnights » Mon May 28, 2012 4:35 am

I don't know what I'd do without you guys. You made me cry, randy.
Beth - Wishing you all restful sleep tonight
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