Lonliness

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

Postby Polar Bear » Wed Jul 10, 2013 1:26 pm

My first marriage lasted 22 years and it was the loneliest time of my life. My brilliant son was the only good thing that came from it.
I left the marriage at 22 years, my half of the house bought me a small house that was totally my own. My son was at uni and I never ever wanted another man/husband.
The occasional date happened where I was bored and uninterested.

One weekend a work colleague invited me to a house party. I went sooooo reluctantly. I was 48 at the time. A very nice guy was talking with me, gave me a lift home, took me to the movies the following week. The rest is history. We were together for 8 years before getting married and have been married for 8 years. Telling him about my rls/wed ?? it wasn't at issue.
Well when watching tv I'd have jumpy leg and have to get ups.... he didn't think anything of it.... it was a part of me.... I'd just get up and walk about. That was before I took medication.

Nowadays, I'm better medicated but still have difficulties. He just takes it as it comes. It's no big deal as far as he is concerned.

I often call it a neurological movement disorder - never RLS.

I have a very long standing good friend of some 40 years history who I could ring in the wee small hours if I was in need.
And a hubby who understands, in as much as is possible by a non sufferer.

I didn't go out looking for another husband, last thing on my mind. Also I was quite happy just to be a couple, although eventually marriage came about. And that was partly because hubby realised that as he would be retiring , we needed to be married before his retirement took place in order for me to benefit from his company pension should he predecease me.

Life can change in a flash - it's true that we don't know what the future holds,

I wish you well - there are good friends and companions to be found who possibly are feeling they would like to meet someone just like you.
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

ViewsAskew
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Re: Lonliness

Postby ViewsAskew » Thu Jul 11, 2013 4:39 am

Huh - a dating site for people with disabilities...http://www.nytimes.com/2010/12/28/healt ... .html?_r=0

For me the severe WED is definitely a disability.
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.

karalea
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Joined: Sun Jun 30, 2013 3:09 pm

Re: Lonliness

Postby karalea » Thu Jul 11, 2013 5:23 am

Thank you Views Askew and rthom for your responses. I am so glad I found this sight. This is exactly the support I need! Hope your sleeping well tonight!

badnights
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Re: Lonliness

Postby badnights » Thu Jul 11, 2013 5:40 am

I have been chronically lonely for a number of years. Not all because of the WED, a lot because of poor choices early on (how was I to KNOW people could be like that) but a lot of the problems the last 5 years can be blamed on the WED. Just as I was beginning to grow up socially and not be so awkward, too. .
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.
That was me until a couple of years ago, when I realized I was going to be dead soon (relatively speaking) and I had no social life. I started accepting the odd invitation or going to an event or a course here or there, even if I didn't feel up to it.

Mostly this plan is working. I feel more connected to people, there are more people to chat with. It's hard, though, because I can never predict how I'm going to feel the next day even, and I often agree to do something and then feel like sh.t while doing it. But if I wait til I can predict a good time, or only do things last-minute, I will be right back where I was two years ago, without a life at all.

As for the partner thing, I started seeing someone whom I had always thought of as a distant friend. Not sure how that happened. Maybe it had been brewing for years and I never saw it? Under my nose the whole time. I am not sure how it's going to work out, but just in writing this, I realize it has at least eased the ache.
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

karalea
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Re: Lonliness

Postby karalea » Fri Jul 12, 2013 4:20 am

Polar Bear, I was bleery-eyed last night when I went back to this thread and I just noticed that I did not include you in my thank you for taking the time to respond to my post. I am so glad for you that you met someone, especially someone that accepts you as you are. That has always been my dream but that has not happened because I have been too busy in my life trying to be what others want rather than understanding myself and feeling like I am good enough. I can relate to you, Badnights. I, too, made very bad choices early on due to feeling socially awkward and now that I have some skills, I have to force myself to seek out people and accept invitations which are getting less and less as time goes by. I realize that I have to take to bull by the horns and make the effort because people just shouldn't have to be lonely if they don't want to be. There are many nice single people out there that likely feel the same. It's just hard to know who is available and who isn't. Oh well first thing first. Got to get this RLS stuff under control!

badnights
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Re: Lonliness

Postby badnights » Sat Jul 13, 2013 7:08 am

There are many nice single people out there that likely feel the same. It's just hard to know who is available and who isn't. Oh well first thing first. Got to get this RLS stuff under control!
They're definitely out there. Recognizing them is hard, but I do know you have to get out there too, at least occasionally. It will keep you sane and take your mind out of yourself for a while, even if it's hard to act sociable. Every time in my life things have seemed impossible to deal with, they've gotten better. I expect things will become much better for you, and you'll be all wise one day soon, looking back at this with a solid partner who gets RLS and adores you....
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
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Re: Lonliness

Postby Polar Bear » Sat Jul 13, 2013 5:38 pm

karalea - We should all bear in mind - none of us make bad choices on purpose.
Also - a friend said to me many years ago - '''well, you need to come out whether you like it or not because one thing's for sure - there's no-one beating a trail to your door'''
She was darned right about that.
And out I went.... with a smile painted on.

Beth, I'm glad you have a special friend - what a corny phrase, it's nice to share things and have someone who is by your side.
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

badnights
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Re: Lonliness

Postby badnights » Sun Jul 14, 2013 6:00 am

there's a reason those corny phrases exist :)
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

michelenebelung
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Re: Lonliness

Postby michelenebelung » Sat Feb 15, 2014 10:25 am

Yea lonely is what im feeling right now. Ive been up for basically 2 weeks now, I get 15 min here and there. Have no meds doc says he wants to find out whats going on first. He tried clozeapam at first but since im so used to pain killers they didnt work. So he just isnt giving me any meds at all. Im at a loss on what to do ive tried all the home remedies I can and nothing works. My depression and anixety level is so sky high I feel I could kill myself any day or have a heart attack. Er wont do anything they just treat me like a drug addict. My appt. to find out the results isnt till the 25th I dont know if ill make it that long.

ViewsAskew
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Re: Lonliness

Postby ViewsAskew » Sat Feb 15, 2014 11:48 am

It sounds like things are really difficult for you.

Clonazepam isn't something that usually works for WED. It's also not a painfuller - it's often used for anxiety, seizures, or panic disorder. What is the doctor's plan? It's not fair, at all, to do nothing! Does he understand WED and how to treat it? I'd be concerned since he wants to use clonazepam. Does he want to do a sleep study? Does he think you have a problem with pain killers and that you shouldn't use them?

Tell us more about your history and what's going on.
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.

Polar Bear
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Re: Lonliness

Postby Polar Bear » Sat Feb 15, 2014 8:22 pm

Michelenebelung - I am so mad when I read of you being left without any time of medication, help or support. Doctors don't have much training in WED and it is sometimes up to us to take them along the path of treatment.
We often have to be very pro-active in our treatment.
Have you had a ferritin blood serum check done. This needs to be up near 100. Usually it is not done as part of normal blood work and has to be asked for. If you have this done please ask for the reading because often a dr or lab will say that 20 is normal...... it isn't good enough if suffering from WED/RLS.

Please also go to the sticky at the top of this forum and print out ''WED Medical Bulletin" - it is in blue text. This is excellent for guidance in diagnosis and treatment. Treatment starts on page 4. The Bulletin is published by the WED Foundation and may be more acceptable to your doctor rather than saying that you 'came across something on the internet' !! Viewsaskew made this point recently and I think it is worth bearing in mind.

Have you ever had medication for your WED/RLS apart from the clonazepam.

http://www.mayoclinicproceedings.org/ar ... 4/fulltext
This link is another that you might wish to print out. You could highlight the relevant portions and show your doctor - don't let him put you off getting treatment = while he thinks about it. It also might be a good idea to have copies to give dr to put into your paper file for future reference.

In the meantime - before I had medication I used to put my feet/legs into a bucket of icy icy icy water - painfully cold = and splash the water up as far as possible. It would take up to 20 minutes but often I got relief for long enough to get over to sleep. Some people like a hot shower on the legs.
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

doety
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Re: Lonliness

Postby doety » Tue Mar 25, 2014 5:47 pm

I'm trying so hard not to be depressed. I look outside my condo and see the guy with MD who lives down the hall. I think about a close friend dying of lung cancer. Since I'm older, that strategy could go on and on, and it doesn't work. I just lost 10 pounds. I'm healthy.....I even went dancing Saturday night for the first time in maybe 8 years. But....you know.....I can't sleep. This damn sh**. For a while, I think I've got it under control. Certain medications work. I go to bed at a normal time, wake up at a normal time. I make plans. I remember a fantastic vacation I took last spring and want to do it again. But now I can't sleep. I try different combos of pills -- which I have plenty of. I smoke week; I don't smoke weed. Right now, I'm supposed to be in Aspen with my daughter, grandson, stepson, etc. They're going to the hot springs...doesn't that sound lovely. I can't go. If I get in a car on a highway, I'll go to sleep. If I even got there, I'd try to sleep in my grandson's room, and walk around all night -- keep him up and drive him crazy, and then either sleep too late to do things or get up and not be able to function.
I know this sounds like the little princess complaining about a rock in her shoe. But I can't say this to anyone else. I'm just a mess and don't know what to do.
It will surely pass, otherwise I'd be dead from jumping off a building. It can't go on and on, right?

Polar Bear
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Re: Lonliness

Postby Polar Bear » Tue Mar 25, 2014 7:25 pm

doety, I guess we all have a rock in our shoe, and we really do understand how you are feeling.
It's really hard to know that you should be enjoying family time and you can't because you don't want to be a nuisance, or a bother to anyone, or to disturb others.
Did you actually talk to your family about your reasons for not going.
It's possible that you would not be the nuisance that you fear you might be.
Could you have worked to your own timetable and joined in whenever possible.
Would you have been the driver of the car on the journey to Aspen.
It seems such a shame to miss out.

And then, when we are depressed it's hard to find the motivation to get going, any hurdle seems like a mountain.

Nice to hear you went dancing on Saturday night, I hope you thoroughly enjoyed it.
Oh... the darned sleep, I'm with you there. The elusive bliss of some rest, I've no idea what that is like. And no medication seems to make much difference. If I knew how or where to have a wee try of some weed I might just give it a go. Probably to the horror of everyone who knows me.

You are so right in that this spell will surely pass and you will again have great vacations.
I am going on a long haul vacation in about 5 weeks.... sleep or no darned sleep !!!
And I wish the same for you. ((( hug )))
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
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Re: Lonliness

Postby EeFall » Wed Mar 26, 2014 12:32 am

doety wrote:I know this sounds like the little princess complaining about a rock in her shoe. But I can't say this to anyone else. I'm just a mess and don't know what to do.
It will surely pass, otherwise I'd be dead from jumping off a building. It can't go on and on, right?


You are describing what severe RLS is and it sucks but if you are down now you also know there will be an up. It is a neverending roller coaster ride. It becomes difficult to remember the good times when one is low but it is the only thing that keeps me going. I think about my wife, son, and grandkids when I am low. I hope you are on the way up again soon so you can enjoy life...and hey it is no mere rock in a shoe, this RLS/WED is a life altering terrible disease and you have every right to feel the way you do!

debbluebird
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Re: Lonliness

Postby debbluebird » Wed Mar 26, 2014 1:12 am

We all know how you feel. The one thing that stood out for me when I read your post was the hot springs. Do they get to get in ? Or is it a place to do other things ? I would love to get into a hot springs. It takes my WED away. Try to come up with some alternatives. Maybe you can go.


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