In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, ValtrexLinks: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions
I sleep badly on a good night, but literally must be in bed 12 hours. I shower or soak in the tub when I have joint pain increases, after a 5pm dinner, then hit my bed literally, usually too weak, tired, wobbly or dizzy to stay standing any longer. Then watch tv, make a phone call or two, take my Ambien at 7 and sleep till I wake, usually around 3am, snooze, go back to dozing with the news on, and get up when the need for coffee overpowers me. Usually after begging my schnoodle to make it for me.......
Hi Everyone, I'm sorry I didn't get back to you sooner. Sundays are rough for me. By the time I shower get ready and go to church I need to come home eat somthing and take a nap.
Old Hippirebel, I'm sorry you are having such a hard time sleeping. I do have times when insomnia takes over but it's about 3 or 4 days out of a month. The rest of the time I'm sleeping.
Lynnwood, it does make since that you would respond to the sleep aid. Maybe even though you were sleeping you wern't getting a recooperative sleep. I diffinently relate to the stress thing though. and boy it doesn't seem like it takes much for my stress level to go up these days. I imagine this possible transplant has a lot to do with it. Maybe counseling would be of some help. It seem like the only people that have a clue are you guys.
Kara(hugs), I'm glad you have some place to go to talk to people. This place has been a blessing to me.
Sue lol, I try to get TACO to make my coffee too. I think it's only fair. I let him out give him food and fresh water. Apperently he just thinks it's all about him lol.
Hi Patty, bless your heart. How is the move going? are the dogs enjoying there new home? So christmas in your new place that must be exciting!
Alwaysrosie, thanks for the input. I used to get more done when i lived by myself. You're right you can get quite a bit done a little at a time. I always wanted to learn how to do knitting and stuff but I'm left handed and when people would try to teach me I just got confused. I was much younger than. Maybe I should give it another try. Or if you want you can always knit me a warm bare of sockies for this winter LOL. Just kidding.
redrose, it sounds like you are right there with the other for the most part. 10 to 12 hours with a nap. Boy this disease really stinks. How on earth do you deal with a new baby? How old is alexander now?
Thanks again everyone, I hope you get a good night sleep.
Peacesoul, I love the saying you have at the bottom. It is so true. Thanks for the response.
Judy I used to do that when ever I had surgery. It would last a couple of months. I was told it was from the anestetic. It finally would go away only to come back with the next surgery. So I assumed that's what it was. However my brother does the same thing and he has never had surgery. My SIL says he does it all the time. Several of my sibs have sleep apnea. He isn't being treated for it though. So I am thinking that has somthing to do with it. Have you been tested for apnea?
I have a mixture of both. In my good days mentally I find it hard to get to sleep and stay asleep. In my bad days mentally I find that I can get to sleep easily and sometimes sleep for 12 hours. Is this yet another symptom of brain fog?
Hi everyone, I would love to answer each one of you seperately but I'm on a down hill slope right now. I started feeling pain in my back yesterday. Like a prize fighter had given me kidney punches. I'm guessing it was my lungs filling up with crap. Last night would coughing and today is way totally not good. coughing gasping for air. my esophagus feels swollen. I'm afraid I'm going to be batteling pneumonia again. I'll head to the hospital if it gets worse. I know the dr. always tells me not to fight it by myself because it will just get worse. But I already am on o2 and anti-b, steroids. and I hate hospitals.
anyway I just wanted to thank you all I really appreciate your input. It seems like 99% of us fall into the same category. about 12 hours plus a nap. Wow that's over half our life. Now that's depressing.
love and prayers
I need 7-8 hours to feel "refreshed" when I'm doing okay. However, there have been times, while in flares, that I've almost slept all day, like 14-16 hours and still felt like I needed to sleep more.
Right now I'm not in a flare, but I do have spine problems for which I take several meds. Those meds make me fall asleep pretty quickly and I sleep about 7 1/2 hours during the week. I usually feel okay when I wake up. If I do something, like trying to walk around somewhere (store or something), because it aggravates my spine problems, I do get exhausted. Then I usually fall asleep early and feel blah for several days.
But like I said, I've had flares in the past where I was completely exhausted and sleepy all the time. My Rheum gave me Provigil to try one time. I took it for a couple days..and had to stop them. They caused me not to be able to sleep almost at all. I was lucky to get a couple hours of broken sleep thru the night. And the worst thing was that med caused my heart to race and pound, it got scary. So I quit taking them & told my Rheum I would NEVER take them again. Then he gave me Elavil, which did nothing for any of my pains, however, it did make me fall asleep within an hour of taking it at night. And I did feel pretty refreshed in the morning.