Share what you ENJOY doing when you just can't sleep....

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
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Kimberly
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Location: Columbus, Ohio

Share what you ENJOY doing when you just can't sleep....

Post by Kimberly »

Preventing/stopping my PLMW tics requires visual and mental stimulation throughout the night, with as little physical stimulation as possible, except for when I'm forced to stand/walk to stop the movement. Sometimes I save dinner dishes for 3am ;) I used to flip through tv channels, browse the internet, and, using a headset, listen to loud music, (sometimes ALL at the same time!), but I was beginning to find that there was nothing I could find that required enough concentration to stop the 8 to 10 hours of movement I have to cope with EVERY night.

I've always been a HUGE fan of music and before my illness got so severe, I would travel with my sons to concerts. Even at (almost) 55, I enjoy almost all genres of music, even hip hop. A while back, I discovered YouTube and footage of 'american idol' type shows from all the different countries in the world. Yes, most countries have them! I found that not only did it not matter that I did not understand the language, but that the need to concentrate and focus a little more intently, helped relieve the tics. YouTube introduced me to Britian's Olly Murs and Robbie Williams, France's Christophe Mae and the musical, Le Roi Soleil, Australia's Jay Parrino, One Man Band/OUTLiER, Taiwan's Jam Hsiao (who's drummer turns out is my son's high school bandmate...small world), etc. Then, somehow, I landed on a YouTube channel with mostly Korean pop music and I absolutely loved it. From Korean pop music, I also learned there are free websites that show Korean movies and dramas, subbed in English. Those movies and dramas also have original sound track (OST) music that is amazing and can be found on YouTube, subbed in English. I've found it so helpful to not only 'watch' the drama's, but doing so also satisfies the need for focus because I must also read the English subs. Korean dramas are anywhere from 16 hours long to >50 hours long. They are expensively made, beautifully filmed (often in other Asian countries), and enjoyable to both watch and read, just like a novel. Since I started watching, I have begun to learn the Korean language and much about the Korean/Asian foods and culture....which are VERY different from American. And, because I love the OST music so much, I have begun TYRING to learn to play the piano. Intense focus on reading the notes and keyboard (with a headset, of course) has also helped. There are internet sites with sheet music and YouTube channels with lessons!

Due to my illness, I may be limited in my ability to make and maintain friendships....I may be limited in my ability to travel and be active...but through the internet, the whole world is available to me! Asian dramas are available on a website called http://www.dramafever.com and since I am partial to this OST song title, I will share the link for anyone who's interested in listening...

Kdrama: The Baker King, Kim Tak Goo
OST: Hope is a Dream that Doesn't Sleeps by Cho Kyuhyun of Super Junior
http://www.youtube.com/watch?v=_uC32_l- ... re=related

Polar Bear
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Re: Share what you ENJOY doing when you just can't sleep....

Post by Polar Bear »

Kimberley, what a wonderful post.

I feel quite humble - my during the night passtime is to play majhong on the pc and cathch
up of emails etc.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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ViewsAskew
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Re: Share what you ENJOY doing when you just can't sleep....

Post by ViewsAskew »

Oh, my - I feel extremely humble, too!

Long ago, one night while not sleeping, I decided to research why an African Violet I had (it had died in a fire) had this really long "neck" and what I could have done about it. Soon I discovered that there were many varieties and that you could grow them from leaf cuttings. I ordered 8 cuttings, thinking that would be a perfect selection and I'd never want any more.

These plants became my refuge. I didn't have to be functional to water them - just awake. I didn't have to have a clear head to plant the progeny. Soon I ordered a few more. Then traded for more. I learned about more kinds of Gesneriads....and got those, too! I started in 2007, I think. Through my darkest nights, nights when I thought morning would never come, they kept me company, kept me focused, and kept me from freaking out. First one light stand. Then another. Then a stand in front of a window. Altogether, I have 48 trays of plants - some holding only 5 or 6 and others holding 80 or more.

Today I have 950 entries in my database - many of these are leaves that are propagating, many are duplicates. Some are Streptocarpus, some are Chirita, some are Episcia. All are named varieties. Some are very large - thing 12-18" across - and others are tiny - say 2-3" across. The flowers are in every possible color and combination (at least possible for that species) and the leaves come in ruffles, variegated, longifolia and many more. Altogether, I'd guess there are 350 to 400 specific varieties. I MUST find homes for duplicates (a leaf might provide 1 or 10 progeny or anything in between) very soon as I'm out of space on my light stands.

I'm a Gesneriad nerd!
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.

jittery girl
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Re: Share what you ENJOY doing when you just can't sleep....

Post by jittery girl »

I am very envious of all of you. Being able to sit at a computer or do anything with WED. I can't sit long enough to even google anything.
"Life is a process. Your participation is required."

Chipmunk
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Re: Share what you ENJOY doing when you just can't sleep....

Post by Chipmunk »

Ann, I would take some cuttings if you are looking to reduce your stock. My daughter loves gardening and flowers, as does my mom. I can pay you postage if they are mailable, otherwise I can pick them up next time I am in the Chicago area (my extended family all live there).
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

Wassy
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Re: Share what you ENJOY doing when you just can't sleep....

Post by Wassy »

Wow! I'm so very impressed by some of the far reaching cultures and hobbies. With just a couple responses, I can only imagine the creativity we as a group have. Everyone always tells me to get a hobby to relax. Once I get some peace and quiet and time to just "chill" I hope to broaden my horizons as you all have.

Since age of 13, I've sat at my computer for hours and sometimes days on end. Now, I can't understand why it's usually only minutes per day. iPhone? Different story. I used to have a grand affection for cars, gadgets, electronics, and more and now it's significantly less of a passion. Hope to get those back.

Eerily, nothing comes to mind as something I want to do, but know it will come to me at some point.

Some of the ideas above are quite intriguing. Thanks for the ideas and wish you complete and continued enjoyment with them.

rthom
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Re: Share what you ENJOY doing when you just can't sleep....

Post by rthom »

wassy i am building a lego room and have quite the collection going on--but mostly i can do it in bed if need be--to relax and take my mind off the discomfort. P.s. the new lego display room is going to be a kool thing--i used to have a great set up that kids came from alot of scout groups etc to see and try--maybe it'll be that good again! lol

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Kimberly
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Re: Share what you ENJOY doing when you just can't sleep....

Post by Kimberly »

jittery girl wrote:I am very envious of all of you. Being able to sit at a computer or do anything with WED. I can't sit long enough to even google anything.


Sorry to hear that. When my PLMW tics are severe, I can't do anything but stand, walk and pound my feet on the floor....but at some point over the years I realized that my WED discomfort and mild PLMW tics can be alleviated by visual focus or mental concentration on anything stimulating or by listening to loud music...while sitting and rocking back and forth in bed. But warning ** just last night I rocked myself head first out of bed and onto the floor, again.** Of course, the minute I stop and try to fall asleep, I'm back to square one. This goes on til morning, when, either the symptoms subside or I pass out from exhaustion, I can't figure out which. Many here seem to get their only sleep in the am, me included, and I'm not sure why. Do our bodies just give way to sleep after hours and hours of torture, or, does it have something to do with actual daylight? Then again, daylight doesn't seem to make sense, since even a daytime nap will trigger my movement. I've always associated the onset of my symptoms with the onset of sleep, day or night. I feel certain that when trying to 'shut down' for relaxation or sleep, something in my brain triggers 'flight'....regardless of the time of day or night.

ViewsAskew
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Re: Share what you ENJOY doing when you just can't sleep....

Post by ViewsAskew »

Chipmunk wrote:Ann, I would take some cuttings if you are looking to reduce your stock. My daughter loves gardening and flowers, as does my mom. I can pay you postage if they are mailable, otherwise I can pick them up next time I am in the Chicago area (my extended family all live there).



Absolutely! They are mailable and I'd love to send you some. PM me your address.
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.

jittery girl
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Re: Share what you ENJOY doing when you just can't sleep....

Post by jittery girl »

Kimberly -
I will definitely try the loud music and rocking. I use my iTunes when I walk on my treadmill, so I am set up to listen to music at night when RLS strikes. I will make a special playlist with some good rocking' tunes to play. OR - do you recommend quiet music?
"Life is a process. Your participation is required."

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Kimberly
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Location: Columbus, Ohio

Re: Share what you ENJOY doing when you just can't sleep....

Post by Kimberly »

jittery girl wrote:Kimberly -
I will definitely try the loud music and rocking. I use my iTunes when I walk on my treadmill, so I am set up to listen to music at night when RLS strikes. I will make a special playlist with some good rocking' tunes to play. OR - do you recommend quiet music?


I recommend both, actually.

When your legs/arms are really bad and you really need to stay awake because you just know relaxing and going to sleep is impossible and everything will just get worse....try loud, upbeat music. The trick is to use a headset and focus intently on the music and words. Singing even. I use my computer...all night....and I have playlists of some uptempo stuff that I play louder for when I am needing to rock, kick, beat on my legs, etc. in order to stay awake and keep the rls/tics away. I even have playlists with entire concerts!

I also have lengthy playlists, easily accessible to switch to, with ballads/Original Sound tracks that I listen to when I'm ready to try and fall asleep, again. In my mind I try to focus intently on following the words to each of the songs, sometimes while gently rocking or rolling back and forth....somehow it 'tricks' my brain into thinking I'm staying awake, while my body relaxes enough without tics to fall asleep....if that makes sense.

A couple of things....I have found that the process doesn't work well for me unless I am wearing a comfortable headset...as the goal is to eventually fall asleep! Also, I will admit that, over time, both the rockin and the mellow music (Adele concerts were a favorite) alone became insufficient, in that they were to 'familiar' and did not require enough mental focus/stimulation to 'trick' the brain.... and thus my journey to find something I'd really have to focus more intently on and so I chose Korean dramas and the drama's OSTs (original sound tracks). If I need to stay awake, the dramas, unlike books, provide music, scenery, story and English subbing that I must focus on to understand the drama. They are sometimes 16-50 hours long, like reading a novel. They are wonderfully distracting when I must rock, beat on my legs, etc. Warning ... they can be addicting! On the other hand, when I 'think' I'm ready to try to fall asleep (again), I play the Korean OSTs created for those dramas and with the headset on, I can close my eyes, gently rock, and focus on both the music and each and every one of the unfamiliar words to these beautiful songs.

Can't remember if I already mentioned, but here's a mellow Korean music/drama sample if you'd like to try:

Music........Hope is a Dream that Never Sleeps (OST Baker King)
http://www.youtube.com/watch?v=_uC32_l-YTk

Drama.......Baker King Kim Tak Goo
http://www.dramafever.com/drama/726/1/B ... _Goo/?ap=1

Let me know if you give any of it a try and how it works!

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