True friends

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

Postby rthom » Fri Mar 16, 2012 3:30 am

I have been without most of my WED meds for a few months but cannot take the consequences of this choice any longer, nor can my wife. The lack of sleep is scaring her as the consequences are extreme not only for me but he as well. Here's the point to the post, a few days ago I started back on my meds that work best and some of the old medicated me is resuming. It's nothing horrible just a general lack of memory and negativity--grumpy sometimes for no good reason. We were talking about the meds and she pointed out that the change is apparent. Started to get emotional and told me she had had a few good months like the time when we were first together. She said she misses her friend, as she has had a glimpse of how things would have been. I hate seeing her in pain especially if it's caused by me (not my choice and she does not blame me at all),
I hurt for those around me, as i'm sure most do. Hopefully something will change for all of us soon. Until then i guess we all have to try to live with the responses we cause for those we love. :roll:

ViewsAskew
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Re: True friends

Postby ViewsAskew » Fri Mar 16, 2012 4:17 am

Randy, so sorry to hear that you've had to start using the drugs that also cause you such difficult side effects. I've been there and it's a horrible experience - sleep or living as another.

I've often marveled that my husband hasn't just walked out at some point. I honestly don't know why. I'm not sure I would have stayed in the reverse.

I can say that it took a fighting with doctors, being "fired" by one doctor, and flying across country to find a doctor willing to help me try every possibility until we found one that worked before I got some semblance of my life and personality back. Years. But, it worked. There WAS a drug combo I could take that minimized the worst of things. Oh, I still have side effects and I'm not 100% the old me - either in personality or in sleep - but I've 80% of both back, instead of losing all of either to the lack of sleep or side effects. On some days I wish I didn't have these side effects, either. But when I compare these to the nasty ones? I can live with these. I can mostly be me with these.

Do not stop trying other combinations. There are some people that it's very hard to help and that the doctors can't seem to find a solution - but it's a very small number. It's so hard to keep fighting for yourself in all of this, but it's worth it.
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: True friends

Postby badnights » Fri Mar 16, 2012 5:53 am

Happy but sad I am for you. Going without enough medication is not an option because the exhaustion robs you of yourself. As Ann says, finding the best combination is a worthwhile fight, even tho it takes time. And maybe that's the best way to help the one you love: by ensuring you get the best possible cocktail into you that has the least side effects.
Then comes the humility part, where you take whatever pieces of you the Powers have seen fit to leave you, and carry on.
Love is a willingness to extend oneself to stimulate spiritual growth in the loved one.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Polar Bear
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Re: True friends

Postby Polar Bear » Fri Mar 16, 2012 10:39 am

Randy, this awful disease affects so much of what we are and what we do.
Congratulations to you and your wife for getting this far. Don't stop trying the different meds and the combinations.
I work on combination and often on bad days practically make it up as I go.
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

cmooreinthepines
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Re: True friends

Postby cmooreinthepines » Wed Aug 22, 2012 5:00 am

I was just thinking about this very subject and wanted to post a shout out to all those who stand by us and here was this thread. I am on my second marriage of 11 years now. I was diagnosed about five years ago and I have said it before, I did not realize then the extent to which my life was going to be effected.

I had a terrible day today, which was all jam packed into about 5 hours. I will spare you the bad parts but as for the good stuff: My husband held my hand, wiped my tears and he "fought" for me today. He made sure I got where I needed to be, he spoke up for me when I needed it, went to the pharmacy, twice and then picked up dinner. He just checked on me to make sure I was okay after he went to bed two hours ago.

I can't imagine what he must feel like. I have literally felt pain at the touch of his intimate hand but he never fails to let me know its okay and he loves me. I am amazed at his fortitude and patience. Perhaps this is what keeps us going even when we don't realize it in the moment? When we lose sight of our hope, others help lift us and remind us they will have hope for us.

And for those who feel alone, I would offer you a hand up and a hug. Know that although you may feel alone, you are not because there are others who understand what you are going through. I know I sound all kinds of strong but I am sitting here soaking my keyboard with tears of grattitude for all the support at home and from this discussion board.

Okay..boohoo. :( I'm done. :) Hope you had a good day and if not...know that I am thinking of you and wishing you better days ahead. Hugs, Cheryl
"When I find myself in times of trouble"...."There will be an answer, let it be, let it be." (The Fab Four)

Polar Bear
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Re: True friends

Postby Polar Bear » Wed Aug 29, 2012 8:28 pm

Cheryl, a moving post.
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

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Scarlett46
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Re: True friends

Postby Scarlett46 » Thu Sep 13, 2012 6:51 pm

WOW...
I have not logged into here in several months. And today, a day that I happen to be realizing how truly NOT MYSELF I really am... The first thread that I read is one that I can relate to so completely. I never really linked depression with RLS (or meds) - only sleep deprivation. I don't have much to say, becuase I would probably start crying sitting right her at my desk at work... and that would not be good! LOL But I do want to say thank you to those of you who share all that you do here. It does help to not feel alone in this, and sometimes puts things into a different perspective than what is going on in my head.
"After all... Tomorrow is another day!"

Polar Bear
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Re: True friends

Postby Polar Bear » Thu Sep 13, 2012 9:31 pm

Good to hear from you again Scarlett.
And yes, it does help so much to hear from others and to know that we aren't alone.
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

debbluebird
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Re: True friends

Postby debbluebird » Fri Sep 14, 2012 1:43 am

This thread reminded me of how my husband has supported me before I found this site. Back in 2010, I was at the end of my rope. Sleep deprived, depressed, still working at that time, and suicidal. I had just begun a new job, with no insurance yet. My friend was my new boss. My husband had me in the car, I was falling apart. He drove me to the doctor. I stayed in the car. He went in and impressed upon them that I needed to see the doctor right then, no waiting. The doctor saw me, whom I already knew. My boss and friend paid for the appointment. The doctor called the specialist (neurologist) and got me an appointment the next day. Needless to say everything worked out. I repaid my boss the money when I got paid a week later. DEB

badnights
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Re: True friends

Postby badnights » Wed Sep 19, 2012 6:08 am

sometimes, people are amazing.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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