Sometimes it is pain that keeps me awake; sometimes I just resist going to bed with as much urgency as I would resist being thrown off a bridge, and sometimes I stay awake because I am the very willing conduit for some new song or prayer. Sometimes when I am reading the posts on lwl I fall on a jagged piece of a broken heart and the only bandage for those kinds of wounds is art...and because of our symbiosis, those wounds make me bleed too.
The good news is that because we feel each other's pain, we feel a little better when an injury is tended to as well.
So I stay awake; But why? If I have so many reasons (excuses) for staying awake it makes me think I am not staying awake for any noble cause....
I am afraid and I don't know what I'm afraid of.
I used to dream such vivid, cinematic dreams...and now...
Do you have trouble sleeping? And what do you do about it? I only sleep an average of 3 hours a night...doc says it is not enough.
If it is possible, try to get some physical activity during the day. Even exercise if you are up to it. Walking, swimming etc. I know with pain exercise isn't always an option, but it helps me rest better if I do it.
I envy those who can sleep in or sleep anywhere, even sitting up. It's been over teo years since I've slept through the night. On a good night I get up at leat 3-4 times. On a bad one I can wake up every half hour. I still work 4 days a week, but never need an alarm clock. I am up an hour or more before it ever goes off.
Melatonin will make me tired and help me fall asleep, but then I get vivid, weird or night mare type dreams. And it doesn't help me sleep through the night. Not even prescription drugs for me. It's funny, but I don't even wake up groggy when I take sleep aids. That is why I call myself the "Energizer Bunny with Lupus".
I don't understand how I get by on so little sleep.
Some things that I have tried are cammomile tea (it's an herbal relaxant), warm milk, a hot soothing bath with sea salts, and lavender essetial oils on my pillow. These things help. but nothing ever gives me a really great nights sleep. I blame my brain fogg and my weight gain on this issue. Perhaps it is like a double edged sword. Lupus causing the sleep deprivation, then the sleep deprivation causing Lupus flares.
I am not a nap taker. Never have been. But recently I have forced myself to take a nap when I get over-tired. It only lasts about 15-20 minutes, but it helps. Good luck.
I hardly sleep as well. I can wake up to 6 or so times a night, so may as well not try to sleep at all. I have recently found out that I have a disc in my lower back that has disintergrated and is very painful, so the specialist has given me some very strong pain killers and this aids my sleep at the moment. I now get about 5-6 hours in a row. I’m now waiting on spinal surgery. What a way to get some sleep.
I feel for you, I sleep when I can. I'm getting ready t start my second job and I ware my own self out but I 'm a single mother of a wonderful son. I go to bed and fall asleep for 2 hours then I'm up. I don't remember the last time I slept 6-7 hours. My body aches all the time and I'm increasing my Nitro for my chest pain. I take enough pan meds I should sleep but no luck. If anyone has any ideas please help me. I need to rest and sleep.
wow thanks everyone for your responses! good for for thought!
I remember now that a while back I was listening to emdr cd's before i went to bed..or actually while i was in bed trying to fall asleep-----
hmmm...i love hot tea...and camomille sounds great
I can't take a bath (although I used to LOVE hot baths) but i can't get in or out ...i am hardly able to lift my leg over the tub to get in for a shower...however, i can soak my feet in a bucket of lavender scented oil and then use lavender scented oil to massage pressure points.
I do feel for you and other member's who find sleep difficult...i'm on a large amount of tablets besides painkillers and when i go to bed at 12 or 2am i'm awake for 8ish so i get just over 7hrs sleep, then i drop off easily if i'm sitting but i do also have to take a valium every other night which is 5mg and i'm gone within 10mins.
It's really hard to suggest something when a member of the family is suffering so much.
so, i write in my sleep: evidence is the weird dream-speak notes I find on the table in the morning without remembering being up to write it. And now, apparently I knit in my sleep too. I had to take apart a shawl I am making for my friend Marcy because in my sleep I had stuck to about twenty stitches and kept knitting them and then turning and knitting back over and over with a gnarl of threads all twisted in a hard blue clump. When I picked up the project last night (while awake) I wondered why it felt all wrong and started examining the rows. when I found the blue clump. sleep knitting is the only thing that explains it.
doc who takes care of my cpap wants me to see a sleep specialist and everything in me cries "NO! NO MORE DOCTORS!" I am so tired of being a medical mystery.
So I have been cleaning and re arranging my bedroom to make it more inviting for sleep and rest.
in fact...i thnk i shall go take a nap...:)
thank you one and all for your responses...I don't feel so alone anymore
It's getting pretty bad for me too. I am so afraid that I won't be able to take hot bats any more. I have a very difficult time getting out of it, but I haven't given up yet!
janice said:
wow thanks everyone for your responses! good for for thought!
I remember now that a while back I was listening to emdr cd's before i went to bed..or actually while i was in bed trying to fall asleep-----
hmmm...i love hot tea...and camomille sounds great
I can't take a bath (although I used to LOVE hot baths) but i can't get in or out ...i am hardly able to lift my leg over the tub to get in for a shower...however, i can soak my feet in a bucket of lavender scented oil and then use lavender scented oil to massage pressure points.
oh bath. I would love to sit in a bath. janice said:
wow thanks everyone for your responses! good for for thought!
I remember now that a while back I was listening to emdr cd's before i went to bed..or actually while i was in bed trying to fall asleep-----
hmmm...i love hot tea...and camomille sounds great
I can't take a bath (although I used to LOVE hot baths) but i can't get in or out ...i am hardly able to lift my leg over the tub to get in for a shower...however, i can soak my feet in a bucket of lavender scented oil and then use lavender scented oil to massage pressure points.
you know, if I can make a wish I will wish for one on those baths that has a door that you can just get open, get in and sit in the wonderful hot water...ahhh
I feel you, I'm also having problems falling and staying asleep. I work 3-11:30. I use to go to bed at 2:00 am. But lately i'm up until 3:00, 4:30 in the morning. Pain meds don't work as much as it use to. I'v been told, i scream in my sleep but i have no memory of it. I'm constantly waiting up, not enough rem sleep, I wake exhausted in the mornig.My body aches everywhere, my muscles are always tense. my dreams are so vivid, they seems so real. I wish i could fall and stay asleep and escape to the dream world. There's freedom there, no more pain or fatigue or brain fog, just the woman I once were, asia 64
I hope you are having a better night tonight and that you will be able to sleep. It makes it really hard when you're tired and hurting.
I take lavender with salt baths when I hurt very bad. My husband helps me into the tub and out, as my legs and arms don't allow me to do it myself. The warm water helps relax me and calms my legs down a little. One of thoses tubs with the little door sounds like a really great idea.
della and aisa, i never realized how many of us suffered with sleep issues.
I slept all day...in fact I felt like I was having adrenal insufficiency issues so I took an extra prednisone (which is what they would do if I went to the doc only they's give me a shot.) when I started shaking in between sleep times i realized something was wrong. it gets so bad...and if not treated i could just slip into The Long Sleep---which I dont want to fall into yet.
idk...i have been so depressed since that doc visit and the prospect to another doc and one that is 5 hours away at that.
asia, my dreams were always so vivid too...and entertaining. I never dreaded going to sleep bc my dreams were something to look forward to...i dreamed today while I slept so at least my brain got a little relief. so i sure know what you mean about staying in dream land.
and della...i will pray that you always always find a way to soak in a hot tub.
I am so sorry, Janice about your adrenal insufficiency. I just read about what it is and pray that you feel better.
I don't sleep well and am up and down all night. I get so hot at night that I'm uncomfortable and combine that with the leg pain...... It's not hot flashes, so I have no idea why I get that way. When I do fall asleep, I don't want to get up. I'll stay in bed and doze for hours if I can. It's almost as if I try to grab as much sleep as I can when I can.
Thank you for the prayers for the soaks in the tub. You don't think about them the same way when you can still take them comfortably by yourself.
I don't think i've saw one of those baths and no thank you to a bath as my seizures put a stop to that more than once and they started making me panic bad...i'm glad i've got a stand in shower although the hubby misses one.lol
Janice have your doctor's looked into insomnia as Lupus causes this very bad for different patients. xxx
janice said:
you know, if I can make a wish I will wish for one on those baths that has a door that you can just get open, get in and sit in the wonderful hot water...ahhh
Hello Janice, my spiritual butterfly, I am so sorry that you are having trouble sleeping, but know that you are not alone, I also wake up many times through the night. I fret even going to the bathroom, cause I know that I won't be able to go back to sleep, so I usually lay awake at night listen to the spriritual radio station. So I am like the others on LWL, I sleep when I can, and my husband takes care of everything, I thank God for him and his caring. I will send up a prayer for you, cause I am like you, I am tired of being everyones medical experiment, NO MORE DOCTORS!!!!!
6+Well Janice you are not alone in this !!!smile Somenites am up til the break of dawn , and find myself sleeping through the day hours , even through the doctors say that i might need some kind of sleeping pill - i don't want more meds , tiered of thaking the ones that i have to take!!! LOL so hope that you find some way to get some sleep for more than 3 hours , and when you do please let me know !!! i want to sleep also.... Beverly L.
hi janice, welcome to the world of systemic lupus..I take 11 pills at night that should put me to sleep,but that doesnt happen very often,my rumey says she would sleep for days off the meds i take..I havent been on life with lupus for a couple weeks,I"ve been in such a bad lupus flair,I have shots in my hands every 3 months so i can dress myself and do basic things..i went to new seasons health food store to explore,and try to find something that might help me sleep,I take 3 kinds of heart meds,so i don't know about mixing things with them,kinda scarry..I had heart surgery,the lupus is going after my heart and lungs.I also sleep with oxygen,when i sleep,my husband got me an old school waterbed and its like lying on a giant heating pad...It does make my joints feel better i cranked the heater up to 85.my bday was friday and my son got me a hot tub ,Im going to try that at night to see if that might help me sleep..Its not set up yet,I'll let you know how that works out..My friends tell me to drink a glass of wine at night with my meds,again that scares me because most of the meds i take say,DO NOT DRINK!!!! I've never been much of a drinker anyways..I wish i could give you some Ideas,but Im fresh out of them..I am here to chat with at night,thats if my hands are working..I havent been on line much lately..when i do sleep,I have such bad dreams,IT must be from all the meds i take.IM looking forward to getting to know people on this site.It makes me feel less alone in this fight..I have yet to meet someone in my area in person who has lupus,I think it would be nice to find someone with lupus that i could meet for lunch or tea ..good luck janice and i will keep trying to find ways to sleep. xoxo celeste
