What Relationships?

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
EeFall
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What Relationships?

Postby EeFall » Wed Oct 11, 2017 3:09 am

So did I retire? Do I choose to not be around people? If my wife knew beforehand what severe RLS would do to me would she have left? I refuse to make friends. I’m friendly but then I don’t want the responsibility of being a friend. I can’t do it. I will always disappoint because I am never the same. I will have a few good days but even then it is not like I am 100%. I bet I haven’t had a good night sleep in over 20 years. Sleeping doesn’t mean much, it is the quality of the sleep. The quality. It is like they say when buying a place; location, location, location. RLS should have the mantra; quality of sleep, quality of sleep, quality.

Sleep doctors unless they have RLS can’t know the lack of quality. There is something wrong even when I have 8 hours sleep, it is just not the same ever. The best sleep I have had in last 20 years is when they knock me out for surgery, too bad it doesn’t last longer. I always feel like I don’t have enough sleep yet to take a nap is darn near impossible. My normal state is to be standing up. Now I find out both of my feet are splayed like a ducks and bunions both big toes and arthritis in my feet. Just thinking about how often I am on my feet, I have already used them way beyond my age.

I am glad it is sort of under control but I miss people. I won’t do it to others though. I wouldn’t even have married if I knew how I was going to be with RLS. I can’t let people get close as I will have a meltdown and say things that I would never say. My life was so different once, happy. At least I don’t have to be around many others now but then it was not what I wanted. Of course when I write I don’t have a problem. It is being in social situations where I have to interact with people and I don’t know what to say anymore or I say too much or I take something someone says wrong. Just not a good situation.

badnights
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Re: What Relationships?

Postby badnights » Wed Oct 11, 2017 4:44 am

I think it's important to have interactions with other people. There are degrees of friendship, or should I say types of friendship. I no longer have any close friends - the ones I could drop in on or tell anything to. But I have people (I used to use the word acquaintances) that I sometimes go to lunch with, people I play hockey with, people that I chat with at the gym, people I chat with on facebook.I have someone I sometimes ride my bike with. That sort of thing. None of these people are what I would have called friends in the old days.

You can go to art classes and interact with people there, go to a book club, a swimming pool, a community garden, a learn-to-skate class, things like that. You get a bit of interaction, which freshens up the world, but have no committments that arise from it. The focus is on what you're doing together, not on the conversation, so you're not as likley to blow up or misinterpret or otherwise feel rotten. And you don't have to feel obligated to turn anything into a full-fledged friendship.

There is something wrong even when I have 8 hours sleep, it is just not the same ever.
omg how true. I wish I understood it. I think this all the time now, becuase I have started sleeping so much better, and I'm still freakin tired all day. I am experimenting with no zopiclone, next week I will try no Lyrica, to see if one of those is the culprit.

My normal state is to be standing up. Now I find out both of my feet are splayed like a ducks and bunions both big toes and arthritis in my feet.
I mentioned my own foot problems before when you brought this up. Well, I have now started forcing myself to sit more, and I found out that I am able to sit more than I thought I'd be able to. I still feel symptoms but they're mild for most of the day, and since I'm flexible I deal with them by sitting cross-legged or in various odd positions. I also have a foot-heater thingie at work and a heating pad at home, used at the desk and when lying on the couch respectively, and the magic of heat in direct contact with my feet allows me to sit or lie for longer.
Beth - Wishing you all restful sleep tonight
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leggo_my_legs
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Re: What Relationships?

Postby leggo_my_legs » Thu Oct 12, 2017 7:08 am

It's terrible what living with a chronic illness can do to relationships. I am experiencing that now.

I suspect that some good psychotherapy and maybe meds if appropriate may improve your ability to compensate for some of the social symptoms you are experiencing (for example impulse control).

I've tried both and found it helpful. I still really struggle too. But things can be done to help. You might look into the dialectical behavior therapy (DBT) workbook by Marsha Linehan. This is a skill-based coping therapy that can be very useful in many situations.

debbluebird
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Re: What Relationships?

Postby debbluebird » Thu Oct 12, 2017 11:20 pm

Quality of sleep. Yes, that is exactly right. Most of my life I always slept well. Never had trouble going to sleep and would sleep 9 to 10 hours every night. I like sleep. Now I hate sleep.
When I take a DA, I may sleep, but the quality isn't that great. In the last few months I have tried sinimet. The first night I might have 5 hours stretches, in between bathroom trips. Then the next day I just don't feel very good, even though I might have had 8 to 10 hours all night. After that first night, I have less and less time in the sleep intervals, with severe leg spasms waking me up each time. Each time I would take a little more of it, which didn't help. I decided to stop taking it.
Most of the time, it doesn't matter how much sleep I get, I'm still tired. I wake up tired. I can sometimes take a nap, but it is rare.
I just stay home when I know that I'm not going to be friendly in public. I do have close friends, but we don't socialize as a couple with other couples anymore. My husbands health is as about as bad as mine, so we fit well together.
I plan few activities outside the house, since I never know when I will be up all night. We just don't live like other people.

ViewsAskew
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Re: What Relationships?

Postby ViewsAskew » Fri Oct 13, 2017 4:50 am

No, we really do not live as other people do.
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
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Re: What Relationships?

Postby badnights » Fri Oct 13, 2017 5:16 am

No, we sure don't.

Due to all the things missing from my life, I am so grateful that I can walk, run, & move well. How small my life would be without that. My brain is fairly screwed up, after all. But how wonderful that even though I can't think well, I can still breathe (despite the asthma :lol: ) and move (despite the bad knee, ankle, feet, & shoulders :lol: ).

I wouldn't have been as grateful if I hadn't had WED. If you ask me (as my son did the other day) which I would prefer, I would prefer to be an ungrateful arrogant ***** without WED than a grateful, humble, sort of nice person with WED.
Beth - Wishing you all restful sleep tonight
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debbluebird
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Re: What Relationships?

Postby debbluebird » Sat Oct 14, 2017 1:45 am

My greatest fear is if I won't be be able to get up and move if I have to, like being stuck in a bed as an old person, with my leg going crazy. That would make me crazy.

badnights
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Re: What Relationships?

Postby badnights » Sat Oct 14, 2017 3:37 am

Yes. Even to read what you wrote makes my mind fly in the other direction.
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: What Relationships?

Postby Polar Bear » Sat Oct 14, 2017 10:23 am

deb - Every so often this fear of being confined comes to my mind. It is the makings of horrors.

I wonder if, many many years ago, we would have been considered as 'possessed by demons' ??
Just a thought.
Betty
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EeFall
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Re: What Relationships?

Postby EeFall » Sat Oct 14, 2017 5:15 pm

I made the doctors goal for my weight yesterday mostly from diet but also exercise by working in yard. The past week I have 3 days over 22,000 steps and the rest over 10,000. I have not been in this good of shape for years but still my sleep is a roller coaster and tired is a word I use a lot.

Maybe one day I can work on relationships but it seems far in future to me. I am thankful that I can sleep at all though and that I can live in the present.

badnights
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Re: What Relationships?

Postby badnights » Sun Oct 15, 2017 5:45 am

I wonder if, many many years ago, we would have been considered as 'possessed by demons' ??
Probably, at least in some cultures. I always wonder what people long ago would have thought and would have done.

Maybe one day I can work on relationships but it seems far in future to me. I am thankful that I can sleep at all though and that I can live in the present.

I suspect not so far in the future. If you continue to live in the present, you may end up engaging in a social interaction without planning it, and without feeling any pressure to be anybody at all. That's part of being present.
Beth - Wishing you all restful sleep tonight
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EeFall
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Location: USA

Re: What Relationships?

Postby EeFall » Sun Oct 15, 2017 12:41 pm

I always felt a little like a vampire-zombie-wolfman who couldn’t do all the fun things like turn into a bat or turn into a quick animal at the sign of the moon but maybe we are possessed by demons :evil: lol

Polar Bear
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Re: What Relationships?

Postby Polar Bear » Sun Oct 15, 2017 7:49 pm

Parts of my limbs are certainly demonic !!

Last night my dh couldn't sleep well because of a sore shoulder which has been lingering for several days.
I have raging cold symptoms since yesterday, stuffed up nose, headache, and am surrounded by nasal sprays, balm tissues (although I find an old towel is easiest on the nose and can then go into the boil wash) etc etc. We were passing each other like zombies.

Ibuprofen didn't help him nor did topical creams so I offered him a couple of Cocodamol It's a testament to how sore his shoulder is and that they have helped him, that he has taken them 3 times, and will have another two prior to bed tonight. He doesn't normally do 'pills'.
However....... I don't have a stash of cocodamol and each time he has a dose that's less for me at the end of the month !!
Much more and I shall have to tell him to see his own Dr.
It's unbelievable how possessive and grabby i feel about 'my' medicine.
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

ViewsAskew
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Re: What Relationships?

Postby ViewsAskew » Sun Oct 15, 2017 11:13 pm

Polar Bear wrote:It's unbelievable how possessive and grabby i feel about 'my' medicine.


Amen to that!!!
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
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Re: What Relationships?

Postby badnights » Mon Oct 16, 2017 3:14 am

what's unbelievable is that you let him have any :lol: :lol:
Beth - Wishing you all restful sleep tonight
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