Lonliness

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
badnights
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Re: Lonliness

Postby badnights » Tue May 07, 2013 3:17 am

the only thing that's different in my life is that hockey season is over. I no longer have 1.5 hr every few nights of intense activity.

I don't recall having a problem last spring, but I might have.

The season tapered down in April and ended for good on Apr 24. The symptoms started getting bad a week or so later, so I lay off the coffee for a couple of days, which used to work, but it didn't work. It was not seriously impacting my work until Friday and it's just been outrageously steady since. Not awful-awful but no break....

so I wonder, should I join ultimate frizbee or something?
gee
Beth - Wishing you all restful sleep tonight
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rthom
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Re: Lonliness

Postby rthom » Tue May 07, 2013 3:27 am

You could do it with your dog--or maybe flyball or agility. If you get really bored (or have an old dog), maybe you could change positions, your dog could give the commands and you could do all the running???
What a mess though, I was wondering about everyone having bad nights at the same time. Maybe something maybe nothing. Hope you are having a better night tonight.

Polar Bear
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Re: Lonliness

Postby Polar Bear » Tue May 07, 2013 5:21 am

Isn't it so disappointing when from nowhere, it seems, the WED gremlin decides to interfere and up the ante. Then we go back to..... what if it was this / or that/ or.... etc. etc. After 4am this morning before sleep came to me, and I'm awake again at just before 6. Grandchildren due to arrive at 7.30 am (a 12 hour stint) .... not much point in trying to get any further rest now !!!
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Lonliness

Postby rthom » Tue May 07, 2013 5:26 am

How old are the children? Old enough to require a lot of chasing them around?
I'll be up for the night too, likely, so if you are bored/lonly.... I'm painting--got tired of being bored--lol. Of course it's only 1:30 here. For me that means I'm not as frustrated or negative as I would be if it was 4 am. Do you get an eb and flow of emotion that is predictable through the night if you don't sleep, just because it's night, And a certain time of night?

jakesmom
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Re: Lonliness

Postby jakesmom » Tue May 07, 2013 10:31 am

I did finally get some sleep last night. My blood pressure bottomed out and the fatigue was overwhelming. I slept all night, but only because a BP drop is very draining. I could sleep all day, but alas, I can't.

Time to get up and walk the dog.

BTW, I also prefer to be alone. I'm always thinking about confined spaces, my WED kicking in while in a restaurant or movie. I don't like to watch movies at friends houses because I have to move around so much. It's so much easier to just stay home.

Polar Bear
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Re: Lonliness

Postby Polar Bear » Tue May 07, 2013 3:27 pm

My grandchildren are aged 5yrs and 2.5yrs and keep us on our toes. :)

No, I'm not aware of any ebb or flow of emotions throughout the night.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Lonliness

Postby rthom » Tue May 07, 2013 3:51 pm

I was thinking of saying something last night, but wasn't sure if it was appropriate--or maybe sounds creepy. But anyway it was just that I bet you are an awesome grandparent (given what you post here), and your husband sounds like he would be too. Your kids are very lucky I'm sure.

glad to hear that you don't get the emotion thing,
i guess it's just a me thing, not a WED thing. I get a very predictable large change of neg emotions that peak about 4ish. By morning i'm starting to feel better again. Lots of times it's neg enough to be dangerous. So that's why i yack so much, trying to engage my brain on something else.

Polar Bear
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Re: Lonliness

Postby Polar Bear » Tue May 07, 2013 7:02 pm

rthom - naaaahh... I dont think that's inappropriate. Yes, we do enjoy the grandchildren and believe that they enjoy us. Sometimes I feel a bit guilty that our own children perhaps didn't get the same quality time that we can give now. But maybe all grandparents feel the same :)

I think that in general most folks find the wee hours the hardest, especially if already feeling a bit low.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Lonliness

Postby rthom » Tue May 07, 2013 7:27 pm

i agree that most gp would feel that way--life lessons learned and all.

I'm thinking more like really deep depression in the middle of the night.

badnights
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Re: Lonliness

Postby badnights » Fri May 10, 2013 8:13 am

rthom, it's good to come on here at night and yak at people :)

I started walking to work instead of driving, and walking the dogs now and again which I've been not doing... and the WED abated for a few days. Now it seems to be back.

I am going to finish this project at work over the next 8 months or so and then never, ever again take on a bigger load than my debilitated self can handle.
Beth - Wishing you all restful sleep tonight
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Polar Bear
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Re: Lonliness

Postby Polar Bear » Fri May 10, 2013 8:28 am

I am going to finish this project at work over the next 8 months or so and then never, ever again take on a bigger load than my debilitated self can handle.
Beth - that sounds like a good plan :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Lonliness

Postby rthom » Fri May 10, 2013 9:19 am

badnights wrote:rthom, it's good to come on here at night and yak at people :)

I started walking to work instead of driving, and walking the dogs now and again which I've been not doing... and the WED abated for a few days. Now it seems to be back.

I am going to finish this project at work over the next 8 months or so and then never, ever again take on a bigger load than my debilitated self can handle.



Sounds like a good idea. Hope the time goes by quickly for you beth.

karalea
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Re: Lonliness

Postby karalea » Wed Jul 10, 2013 4:14 am

Rthom, thanks for starting this thread. Loneliness is a big issue for me. I was divorced approx 12 years ago and had a horrible breakup about 6 years ago in which my boyfriend of 3 years was discovered to be leading a double life which involved a totally different lifestyle from heterosexuality. I was so devastated by this that I had no desire to date for a long time. Recently I have felt a strong need to seek companionship/love but honestly at age 51 don't even know where or how to begin. When I think of having to share with another person all the things that make me, me, I cringe. Then I think about the idea of trying to convey to a possible mate the seriousness of RLS and how much the pain affects my life, I wonder, why would any man want to be bothered? I feel like this is my dirty little secret. It's embarrassing just to have to say the name of the disease which everyone knows as "Restless Leg Syndrome". The name itself is a joke and then you can put that together with all the little jokes that have been written about it, the animated cartoons etc. For example, has anyone seen the cartoon of a guy riding his stationary bike at night next to a factory which served to provide power to the factory? I feel that I suffer in silence and would love nothing more than to have a special person in my life that gives a damn. I have stopped reaching out to make friends because I am so tired all the time that the effort is difficult and I am rather unreliable when it comes to making plans. I have lost alot of trust for people over the years. The loneliness is like a whole separate pain in and of itself. I am getting to the point where I am just starting to accept that God did not intend for me to have much love in my life. I am very lucky to have a wonderful child that is so full of love and brings out the love in me. I guess we can't have it all. As long as we are alive there is hope for a better tomorrow in all aspects of our lives, right?

ViewsAskew
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Re: Lonliness

Postby ViewsAskew » Wed Jul 10, 2013 4:24 am

karalea wrote:Rthom, thanks for starting this thread. Loneliness is a big issue for me. I was divorced approx 12 years ago and had a horrible breakup about 6 years ago in which my boyfriend of 3 years was discovered to be leading a double life which involved a totally different lifestyle from heterosexuality. I was so devastated by this that I had no desire to date for a long time. Recently I have felt a strong need to seek companionship/love but honestly at age 51 don't even know where or how to begin. When I think of having to share with another person all the things that make me, me, I cringe. Then I think about the idea of trying to convey to a possible mate the seriousness of RLS and how much the pain affects my life, I wonder, why would any man want to be bothered? I feel like this is my dirty little secret. It's embarrassing just to have to say the name of the disease which everyone knows as "Restless Leg Syndrome". The name itself is a joke and then you can put that together with all the little jokes that have been written about it, the animated cartoons etc. For example, has anyone seen the cartoon of a guy riding his stationary bike at night next to a factory which served to provide power to the factory? I feel that I suffer in silence and would love nothing more than to have a special person in my life that gives a damn. I have stopped reaching out to make friends because I am so tired all the time that the effort is difficult and I am rather unreliable when it comes to making plans. I have lost alot of trust for people over the years. The loneliness is like a whole separate pain in and of itself. I am getting to the point where I am just starting to accept that God did not intend for me to have much love in my life. I am very lucky to have a wonderful child that is so full of love and brings out the love in me. I guess we can't have it all. As long as we are alive there is hope for a better tomorrow in all aspects of our lives, right?


It's hard to deal with several things at the same time. I wish you to soon be on a much happier road.

You never have to call it RLS or Restless Legs Syndrome again! What you said is one of the many reasons for the name change. Call it "Double U-E-D." It's not hard to say, though sometimes I say the full name, Willis Ekbom Disease.

I found my husband during a terrible period in my life - I had much worse periodic limb movements in sleep (PLMS) than WED for many years. I was sleeping 12-14 hours and was still exhausted. I lost my job. I couldn't function. I hadn't been dating hubby long when this all came to a head. He's still here. And having him here helps me tremendously.

I know this may not be popular and please ignore if it's not for you. You might like a book called, "When Bad Things Happen to Good People," by Rabbi Kushner. It speaks to those who belief in a Judeo-Christian God. I know several people it has helped look at God a bit differently.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rthom
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Re: Lonliness

Postby rthom » Wed Jul 10, 2013 4:37 am

karalea
I was supprised to see this thread, I think it's god to see it every once in a while. Your feeling sound familiar to a lot of us here I'm sure. Keep in mind we are here to help you through the loneliness that is a part of this too.


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