Outburst at UPS Store Guy

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
ViewsAskew
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Re: Outburst at UPS Store Guy

Postby ViewsAskew » Mon Nov 06, 2017 6:23 pm

leggo_my_legs wrote:Thanks for the advice, Views. I'm glad you and your husband found each other. I had been looking for this post but couldn't find it!

I think one thing was that I was barking up the wrong tree, i.e. trying to date able bodied people who really don't understand and are only interested in someone "fit and healthy."


My prior LT relationship - where I had stepkids, dogs, cats, a house, and all that goes with it - ended, essentially, when he started sleeping in the spare bedroom. Why? Because I kicked him so much at night, he sometimes had scratches from my toenails and he NEVER got sleep. At the time, my RLS was very mild. We didn't do anything to bridge the distance that this created. Soon he was working second shift and our hours didn't coincide. Then he took up golf and I scoffed because chasing little balls in the heat sounds like a rung in hell to me. I started doing creative things and spending my time in a darkroom or out hiking or bike riding. One day we looked at each other and realized our paths had diverged so much that we didn't even know each others' friends.

I didn't realize - even then - that the LEGS were the basis of this problem. I correctly identified the differences we had and how it happened, but it didn't occur to me that I had to fix this.

I was incredibly lucky when I started dating hubby that he had celiac and completely understood what a person goes though with stuff such as this; with all my planning about whether we would get along, I did not take one of the most important parts into consideration. Two years into our marriage, the sleep hell started, the augmentation, the searching for doctors, getting 30 minutes of sleep in 2 minute spurts, etc. He stuck by me.

Most people here know I am in the final throes of a long distance move. Maybe because of that, maybe because my birthday is in the fall, maybe because of chance, I have talked to or seen three old flames in the past month, all who reached out to me. One, with whom I have stayed good internet friends, is a full time musician and the lifestyle of never having a day that you could count on for a date didn't work well for me at the time. Because of his crazy schedule, we connect on Facebook all the time and say we will have a lunch, every few months for the last 8 years, lol. We finally met last week. We shared respective stories of the last few years; I told him about the movement disorders and why I was moving and the hell of it all. He said that while he sometimes thought of me with fondness and wished we had seen if it would have worked out, he never could have dealt with what I went through and would have bailed.

So, the very long and wordy route to say - YES! Find someone who gets a forever problem. It could be someone solves this in our lifetimes, but that they would solve it AND develop a therapy that would help us very soon is highly unlikely. It will be years, if I had to guess.
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.

Rustsmith
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Re: Outburst at UPS Store Guy

Postby Rustsmith » Mon Nov 06, 2017 7:16 pm

leggo, for years I was that "fit and healthy" spouse who stuck by my wife, whose health problems still outweigh my RLS. We shared far too many interests to let her MS come between us. But like the connection created by Ann's RLS and her husband's celiac, the increase in the severity of my RLS has drawn us even closer. She gets to periodically experience the role of care giver now (like my inability to do much driving during our long distance move because I was so badly augmented at that time) and I get to understand what it feels like to lose some of my independence and the need to rely upon her. But I think that the key point that I would like to make is not to misjudge those who appear to be "fit and healthy". I am still a competition class runner and only a very small number of my friends have any idea what kind of meds that I have to take to appear to be "normal". My suggestion is to look for shared interests (that is what kept us together) and explain your situation. If he is the right person, those things all fall by the wayside.

By the way, our solution to the sleeping issue is a split king bed. We get to share a bed, but because the two parts are simply pushed together, my movements do not carry over to her side.

Finally, I remember seeing something years ago by a doctor on the easiest way to diagnose PLMS. He said he simply asks to see the patients calves. In cases of severe PLMS, the patients calves have bruises from where their bed partner gets tired of being kicked all night and so kicks back - HARD. :)
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Outburst at UPS Store Guy

Postby ViewsAskew » Mon Nov 06, 2017 7:55 pm

Too funny about kicking back.

We went with the low motion mattress - memory foam - as our solution. But, I didn't love it - like moving in quick sand. We bought a new mattress when we furnished the condo for rent; it is a newer type of foam and is much better while still controlling motion. We are thinking of a queen when we get our place in CA, as bedrooms are smaller there. But, if I were to get another king, I likely would go with two twins together or some form of a split king.
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.

Rustsmith
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Re: Outburst at UPS Store Guy

Postby Rustsmith » Mon Nov 06, 2017 9:17 pm

Technically, the split king is sold as a pair of super twins. It meant buying all new linens since we had always had queens, but it has been worth it. We even splurged and got one that has the ability to raise the back and lower leg sections. I incline the head just a bit so that it acts like a thick pillow, but my wife uses both and pretty much lived in it earlier this year following bunion surgery because she had to keep her foot elevated most of the time for about a month.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Yankiwi
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Re: Outburst at UPS Store Guy

Postby Yankiwi » Tue Nov 07, 2017 5:18 am

Steve, I'm so glad you and your wife are there for each other.

leggo_my_legs
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Re: Outburst at UPS Store Guy

Postby leggo_my_legs » Tue Nov 07, 2017 6:20 am

Rustsmith wrote:Technically, the split king is sold as a pair of super twins.


I am just popping in to say, I misread that as 'SOLID as a pair of super twins.' :lol:

I will reply more later. Going to bed [hopefully]!

leggo_my_legs
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Re: Outburst at UPS Store Guy

Postby leggo_my_legs » Wed Nov 08, 2017 4:32 pm

Views, that is so sad about losing a relationship due to this condition! I'm glad you found someone else.

Rust, that was beautiful what you wrote about your wife. One of my issues right now is that I don't have many interests anymore, except my dog. Everything seems to have fallen by the wayside in favor of the energy it takes to survive my daily grind. It's pretty bad. I'm not even spending much time with friends anymore.

badnights
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Re: Outburst at UPS Store Guy

Postby badnights » Fri Nov 17, 2017 6:57 am

One of my issues right now is that I don't have many interests anymore, except my dog. Everything seems to have fallen by the wayside in favor of the energy it takes to survive my daily grind. It's pretty bad. I'm not even spending much time with friends anymore.
leggo, I truly believe this is temporary. I've seen enough people go through it, including myself more than once, to realize it has an end, an "other side". Once your health issues are being treated properly, you'll get your energy back, and interests will follow. You may have formed a habit of isolating yourself meantime, so pay attention (as your energy comes back) to be sure you're not avoiding social opportunities out of habit instead of need. But for now, just focus on getting healthy.
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

leggo_my_legs
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Re: Outburst at UPS Store Guy

Postby leggo_my_legs » Sun Nov 19, 2017 8:39 am

badnights and everyone...you are so wonderful. Thanks for the encouragement and perspective.

Polar Bear
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Re: Outburst at UPS Store Guy

Postby Polar Bear » Mon Nov 20, 2017 11:38 pm

leggo - I find also that sometimes it is easier just to be at home and potter about than find the enthusiasm to get out among folks and 'take part'.
Finding the energy can be like an uphill climb and it's hard to committ when we don't know how a particular day might find us.

As badnights has said, it can be a habit, and I think one that I could fall into quite easily.

Mind you, with a push, if I get myself up and out, I can have good fun and thoroughly enjoy myself. But it can be quite tempting to pull on the joggers and a sweatshirt and think ' not today.

I have noticed that my housekeeping skills could do with a bit of a push. You can only vacuum/brush the centre of the room so many times before the dust bunnies get noticed. Energy levels can't peak when there is only 3 or 4 hours sleep night after night after night.
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

leggo_my_legs
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Re: Outburst at UPS Store Guy

Postby leggo_my_legs » Sat Dec 02, 2017 8:48 pm

Polar Bear wrote:
As badnights has said, it can be a habit, and I think one that I could fall into quite easily..


Thanks for the reminder about habits...it's so true!

Sunday and Monday I'm going to visit a friend in the Bay Area...that should help, and get away from the 'hood too.


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