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serand4
05-20-2011, 06:40 PM
Hi all -

I know this has been posted and suggested before so I guess I'm just reititerating a tried and true treatment. A lot of people have said that when you're tired, you need to simply take that moment and rest or sleep. I spent the firt several months of my Lupus life fighting this. I thought if I could stay up during the day, I would sleep better through the night and have a more "normal" life. The thing is, I still hadn't accepted that I'm not going to have a "normal" life. I have Lupus and changes needed to be made. I'd applied for disability and I was receiving medicaid and food stamps. I knew I needed to take care of myself and my family but I hadn't come close to learning how to manage or cope with my disease.

Recently, I went through nearly three weeks of a weakness and fatigue that I still can't explain and I'm fairly good with words. I guess the best way to put it is I no longer cared if I lived or died. It didn't make a bit of difference. I know depression very well -- we're long time friends, but it wasn't even like depression. It was simply, "If this is my life, I don't want to be here." I had no plans to harm myself at all. I didn't mess with my medication. I still would cook when I could and clean when I was up to it. I cared a little, I guess. But it was more to keep some normalacy for my son that about me. I felt that all the good things had run out and I was simply a shell that held pain and inexplicable weakness.

And the pain, dear Lord, the pain!!!! I went to my rheum and really spelled things out. She increased my pain medication and I will say that helped some. At first it helped a lot and then fatigue set in so I thought it was the pain medication. Finally, after the three weeks of extreme weakness and fatigue I decided to start sleeping when I was tired. No matter what, no matter whether my son was home or not, if I had to reschedule appointments, I was going to sleep. I found that a lot of times it was just 45 minutes of sleep that I needed and sometimes it was hours. Within two weeks I started to get better. A lot better! I still had sever pain days but then I would have good days. I also had days where I could do more things than one like grocery shop and have a doctor's appointment. My past two days were incredibly busy for me. More so than I've ever been busy before so today I absolutely cleared my calendar. Sure enough, I slept nearly the enitre day after a full night's rest. Tonight I was able to do some light cleaning and make a real dinner for myself. I'm tired now but not so fragile.

I praying that with all this sleep today and the fact that I got a few household things done, I can go do something with my son tomorrow. Maybe visit our local cat santuary or go antiquinig (as if I could afford anything, but it's still fun!).

Point is, I think what our wise ones have been saying all along is true. Listen to your body and sleep when you need it. Fatigue and weakness is such huge factors in this disease and perhaps the easiest and most effective medication is our bed. I hope it continues to help and I hope this helps others.

Take good care -- Susan

kim,l
05-20-2011, 07:50 PM
yes susan i agree it took me a long time before i would admit i needed to slow down and rest i finally gave in and realised that me resting was more important than having a spotless house and that i would have to reschedule appointments and do different things with my daughter that did not make me so fatigued and that i had to stop being so proud and accept help from others that was the hardest thing especially when i was used to doing everything myself this disease gives us life lessons sometimes we would not expect . i know to well the depression but we need to take one day at a time and not feel guilty this is what our life is now and we will have good days and bad hope you feel better soon hugs kim l

magistramarla
05-20-2011, 09:31 PM
I have a love/hate relationship with my bed. I feel very, very tired when I go to bed, especially if I take a melatonin and a magnesium about an hour before.
However, once I sleep for two to three hours, I start waking up every 1 1/2 to 2 hours for the rest of the night. I have lots of muscle spasms at night, and I read somewhere that people who have spasms at night get relief from them during the REM cycle. It also said that each sleep cycle lasts approximately 90 minutes, which matches up with the way I sleep. I guess that the spasms come back every 90 minutes, and wake me up.

Sometimes, I can't get right back to sleep, and I toss and turn for an hour or two. I also often wake up drenched in sweat, which I don't know whether to blame on the AI disease, menopause, or the Thermapedic pad that my husband loves so much.
I have a very rough time waking up in the morning. I think that I get some really good sleep between 6 and 9 in the morning, but I really wish that I could drag out of bed earlier than that.
Hugs,
Marla

tgal
05-20-2011, 09:34 PM
See I have an issue with this.. ok, not really with this because I will rest when I need it but what I do is just as bad. When I feel better I over do it and then I end up in a worse place then I would have. I am not sure if I just want to get everything in while I can or if it just feels so good to be productive that I don't stop. I know they tell us NOT to do that. I even post a page to newbies all about not doing that however I don't do it myself! They tell us that our body does not have the mechanism to know when when we have had enough so we keep going and going well beyond what our body should. Then, when we finally stop we go into flare mode because we did too much.

This is my issue and what I am working on now. I think it kind of goes hand in hand with the resting. We have to get rest and not over do it. We have to learn a new way of living so we can still enjoy our life. Life is going to be different but, if we take the time to learn, it can be just as good as it would have been but in other ways

Hunniebun
05-21-2011, 01:37 PM
Resting is definitely important...I take a 3-4 hour nap every day as well as sleeping 8-9 hours every night. If I don't take that nap I just won't make it and my thinking becomes too slow and dangerous, especially if I am driving.

rob
05-21-2011, 03:36 PM
I find that the fatigue, when combined with sleep deprivation, is a sure fire way to cause or worsen a flare. It also puts me into a real rut of being depressed. If I'm at home, I try to allow myself to sleep whenever I feel like I could actually fall asleep, regardless of time of day. This isn't always practical though. I feel like Marla. I have a love/hate relationship with my bed, and with sleep in general. It's a constant battle.

Rob

Bonita
05-21-2011, 06:21 PM
what i would give for a full nights sleep. Bonita