Lonliness

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Lonliness

Postby rthom » Sun Feb 10, 2013 10:41 pm

RLS WED seems to produce extreme lonliness in folks ---what do you think/feel?

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Lonliness

Postby rthom » Tue Feb 19, 2013 7:53 am

The sound of crickets........ :(


lol---that's the truth!!!!

Polar Bear
Moderator
Posts: 6655
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Lonliness

Postby Polar Bear » Tue Feb 19, 2013 11:01 pm

The sound of crickets ????? what am I missing here..... :eh:
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
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Lonliness

Postby rthom » Tue Feb 19, 2013 11:50 pm

There was no answers to the question--so around here the sound of crickets can be in lonli places---out at night alone etc... Thus the cricket sounds---lonlieness on the mesage page--lol Make more sense?

Polar Bear
Moderator
Posts: 6655
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Lonliness

Postby Polar Bear » Wed Feb 20, 2013 1:11 am

That's what I thought you meant.... We don't get to hear crickets here in N. Ireland. :D

I don't find loneliness a problem. When up at night I have always something to be at.

If you mean emotional loneliness with regard to those around us not understanding how we feel as we suffer our varied symptoms..... I feel I am as fortunate as I can be in this regard, given that unless you have it you can't begin to imagine the symptoms and how they ripple into all aspects of living. My family and friends are all accepting of how I sometimes have to take steps, literally, to cope. It's a part of my life and always has been. WED and me come as a package. I believe that when I was working then loneliness came into the equation because I was under pressure to perform and perhaps felt the loneliness of having a greater burden and therefore a harder job all round.
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

EeFall
Posts: 1354
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: Lonliness

Postby EeFall » Wed Feb 20, 2013 3:12 am

Dude. I saw this message last night and felt so bad that no one had answered after a week, don't know how I hadn't seen it before. I had something very profound to say (really) and then I fell asleep standing up in the kitchen with the laptop on the counter because I couldn't sit down. I crashed to the floor backwards (laminate floor) and was so out of it when I finally got up I turned off the computer before I posted it. I know this sounds weird, but it is weird lol - anyway - I haven't slept in several days now and it is horribly lonely at night by myself. I am trying to get out of pacing the floor as much though, I have found that standing up or leaning against the kitchen counter works fairly well most of the time when it gets really bad.

Sometimes I understand Christ a bit too much when, it is written in the bible, that he is trying to get his friends to stay up with him on his last night on Earth, and the losers are all too sleepy to stay up with him and pray. The mind is willing but the body is weak kind of thing :think

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Lonliness

Postby badnights » Wed Feb 27, 2013 8:18 am

I've missed LOTS of posts lately , can't fit everything into my shortend day, but I GET LONELU and a lot of it (ALL?) is from the RLS. Poeple whose spouses don;t gte it, or people without spouses, I thik are more susceptible to this.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Polar Bear
Moderator
Posts: 6655
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Lonliness

Postby Polar Bear » Sun Apr 28, 2013 3:08 am

I don't think my husband 'gets it' as in understands exactly the sensation, or how something that isn't painful can be so disturbing.

But.... he does 'get it' that it is a big problem for me, that it will always be a part of my life and that it interferes with all aspects of my life. When we go out for any length of time he'll say to me as he locks the door 'tablets ???' The fact of him understanding that I find it horrible etc. etc etc is good enough for me. He can't understand the sensations if he isn't a sufferer. I have never been made to feel that I am a nuisance or being a drama queen.

It is now 4am and I've been up for two hours having had an hour's sleep. There are no WED symptoms just no sleep - These times during the night I have come to think of as 'my time' - insomnia is a part of my life. But I don't feel lonely and in that respect I feel very fortunate.
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

jakesmom
Posts: 353
Joined: Sat Feb 09, 2013 11:01 am

Re: Lonliness

Postby jakesmom » Fri May 03, 2013 1:46 am

Being single with WED has its ups and downs. I don't have to deal with people when I don't want to, but on the flip side when I have good days there is no one to share them with.

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Lonliness

Postby badnights » Mon May 06, 2013 7:57 am

I have a friend who's been around off and on since fall. I didn't realize til last night that he's never seen me suffering from it. Last night I didn't want him to come over, because it had been a bad day - one of those days I couldn't shake off the grogginess - and the WED kicked in around 6 PM despite my meds. I had a gut feeling that I didn't want to see people.

But I agreed to see him, and sure enough, the WED didn't let up all freakin' night, not til 5 AM could I lie down. I had asked him to go home long before that, but I realized during the hours he was with me, that he had never seen it. It was an eye-opener for him. It took him a while to realize - and I think he still doesn't realize - that there is nothing he can do to help it! That massaging doesn't help! That I can't cuddle! That he's helpless to change things! Actually I did find out that a shoulder rub (while standing up) is a good distraction :) So - not totally helpless.

I had no idea that he had never seen this happening. I guess I want to be alone with it, who wants to spread the grief?, and always before I've managed to, without realizing that's what I was doing. I hide from people and events.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
Moderator
Posts: 14583
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Lonliness

Postby ViewsAskew » Mon May 06, 2013 8:39 am

badnights wrote:I have a friend who's been around off and on since fall. I didn't realize til last night that he's never seen me suffering from it. Last night I didn't want him to come over, because it had been a bad day - one of those days I couldn't shake off the grogginess - and the WED kicked in around 6 PM despite my meds. I had a gut feeling that I didn't want to see people.

But I agreed to see him, and sure enough, the WED didn't let up all freakin' night, not til 5 AM could I lie down. I had asked him to go home long before that, but I realized during the hours he was with me, that he had never seen it. It was an eye-opener for him. It took him a while to realize - and I think he still doesn't realize - that there is nothing he can do to help it! That massaging doesn't help! That I can't cuddle! That he's helpless to change things! Actually I did find out that a shoulder rub (while standing up) is a good distraction :) So - not totally helpless.

I had no idea that he had never seen this happening. I guess I want to be alone with it, who wants to spread the grief?, and always before I've managed to, without realizing that's what I was doing. I hide from people and events.


I'm amazed, again, at how similar our versions of WED are. I really don't like to be around others when I have this. On days when I wake up with it, I sneak to my office quietly so hubby won't know I'm up - my office is upstairs, his is downstairs. He likes to say good morning, hug, chat when I get up. Sometimes I don't even eat because I want to be alone and eating means going downstairs! Someone next to me, even sitting next to me, is too close. I can't describe it - it's like an anxiety that goes inward and makes me wary of human contact.
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.

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Lonliness

Postby badnights » Mon May 06, 2013 8:44 am

yup.

sigh

It's all over me tonight again.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
Moderator
Posts: 14583
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Lonliness

Postby ViewsAskew » Mon May 06, 2013 8:57 am

badnights wrote:yup.

sigh

It's all over me tonight again.


And, I, too, and up and crazy with symptoms (and alone) tonight.
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
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Lonliness

Postby rthom » Mon May 06, 2013 5:31 pm

ditto, waas in so much pain I just stood in a small area all night and tried to not be aware of what I was experiencing. This was the 3rd night in a row, on the second I thought everyone was having a good night on here--only 1 msg all night. Was pleased that folks might be getting sleep.

Polar Bear
Moderator
Posts: 6655
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Lonliness

Postby Polar Bear » Mon May 06, 2013 6:21 pm

badnights and Views - ditto ditto sigh ditto :roll:
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


Return to “Help for Relationships”

Who is online

Users browsing this forum: No registered users and 1 guest