Longevity

[Lil72Shasta]

Does anyone else care if their life span is not long because of the misery of this disease? No, I am not suicidal so don't call the hotline. I watched my father become an invalid by 65 because of RLS and arthritis and my mother helpless by 65 because of alzheimers. I am 56 and wonder if I'll make it to 65 with any quality of life.

[cornelia]

Yes, I often wonder myself. But I can assure you that you can get old with RLS. Virginia Wilson, who wrote the first book on RLS and was a victim herself, died when she was 80 something. Having said that I don't want to think of my future with RLS at all, because, being a severe patient, I just cannot imagine that I want to become old with this dreadful disorder. Sometimes I have suicidal thoughts especially now that I have tried all meds and still am having a lot of trouble, rotating meds et. But there are days that I am quite cheerful.

The other day I talked to my neuro about suicidal thoughts and that I know that many severe patients have them from time to time. He was very nice and understanding. I told him that there could be a time in future that I will have no other choice than to end my life myself, as I don't see myself with severe RLS and Alzhemer's e.g. in a care home. Also, if it gets worse I may not want to go on. I have written these thoughts down in a letter to him, I want to have it in my file.

I usually am not depressed, only sometimes when changing meds. I'm glad about that and feel for patients who have to deal with that as well.

I think it is good to talk about these things with your partner, your doctor and in support groups. The other day I read a message from someone who tried to kill herself because of RLS and didn't succeed. So, in my view suicidal ideation can become part of WED/RLS.

Corrie

[Polar Bear]

Cornelia, I found your post very moving and I understand your thoughts and feelings entirely.

I have said on different occasions that I have a great fear of being in a cared for situation with insufficiently treated or even untreated rls/wed and being unable to communicate. Or being old and in a cared for situation and my requests for meds not being heeded.

[badnights]

Yes, I am convinced my life span is being shortened and yes, I don't like it. I am pretty blunt with doctors who pooh-pooh the idea. There are now studies linking RLS with an increased risk of cardiovascular disease, but it's just common sense!!!!!! you don't sleep, you die. Plus all the studies linking poor health and early death to chronic sleep loss. Some doctors have no conception of just how little sleep we're sometimes functioning on.

And I'm convinced it's not just lack of adequate sleep. When my WED/RLS is acting up, my whole body and mind feel off, somehow, wrong, and I can't function or accomplish anything, even if the WED/RLS symptoms aren't very strong. It's much worse than just being tired. Similarly, insomnia without RLS is much more peaceful than RLS-induced insomnia.

Past the anger and denial comes both acceptance and a bit of fight. I'm not going to roll over and let people do whatever they want at my expense, because none of them care about me anywhere near as much as I do. No doctor is going to hurt me again. For long. (I can't control everything they neglect to do!) And I won't stop fighting to live the remaining shreds of my life as fully as I can.

I will sleep when I need it. I will ask for medication I need, and ask for referrals and explanations and whatever I need to if it's not forthcoming. I will not tell anybody what medication I'm on because they make my life miserable. If anyone else tries to make my life miserable, I will show them the errors in their thinking. when I know I'm right and someone else is wrong and their wrongness is ruining my life, I will fight them.

I haven't slept much for three nights, I don't know if I'm feeling combative or combatted. I also can't promise that I won't some day (who knows when , soon?) feel unable to bear it any longer, as I have before. But I'm keeping my positive attitude for as long as I can. There was a decade in which children who developed juvenile (Type 1) diabetes were expected to die, and they didn't because Banting and Best found out how to replace the insulin they needed. Within a few years, what had been a death sentence became a massive pain in the arse that you could live a long and happy life with. The same thing will someday happen for RLS, and who's to say it won't be in your lifetime or mine?

[Polar Bear]

Badnights: Good for you.

[carolsond]

Hi!

I really admire your tenacity and fighting spirit-Good for you not to give up the fight because you never know when a cure and/or more effective meds with fewer side effects may be found.

I have had severe RLS for about 25 years so I can definitely empathize with your plight because I have had endless nights of little or no sleep even with the meds I'm taking and I recently had a hip replacement and my RLS definitely got worse after the surgery which I learned is normal because of the blood loss and the stress of the surgery, etc. So now I have not only RLS to contend with but also a hip replacement plus multiple other health problems and I have to oversee my mother's care. She has mild to moderate dementia and is 99 years old. I'm her Power of Attorney so I'm responsible for her finances and running errands for her, etc. I don't know how I do it. But for the Grace of God go I. It's tough. I don't have any family. I live alone and my 2 brothers live out-of-state. I'm 71 years old and at times I feel like 102. I try and participate in social activities here at this independent Senior apartment, however, with my health issues and having to take care of my mother's finances, etc. I just haven't been able to take part in too many activities. In fact, whenever I play cards or bingo or even go to a concert if held in the evening, invariably my RLS will act up and I'll have to leave after about an hour. When you play cards, you can't just get up and leave. My quality of life is definitely negatively affected, however, I try to make the most of each moment good or bad. This life is precious - a gift from God and not to be misused or thrown away so-to-speak.

Keep up the good fight and pray that a cure and/or more effective meds with fewer side effects will soon be found for this horrible torturous RLS.