Sleep, glorious sleep! The 12-hour remedy.

I've known for a long time that I need sleep. As I've mentioned before, I try to get an hour and a half to two hours of sleep during the day, and at night, 8 hours is minimum, 9 hours is ideal, and 10 hours is heavenly. This is just the way it is - and I figure if I can combat that debilitating lupus fatigue with extra hours of shut-eye throughout a 24-hour period, then so be it. Am I really missing anything? I don't think so!

That said, a few nights ago, after I put the girls to bed, I decided to lay down for a few minutes. That was at 8:30pm. Three hours later, I woke up - just long enough to do my nightly routine stuff and chat with Johnny for just a few minutes - and then it was back to sleep. At 7:30 the next morning, I woke up feeling like I could run a marathon. I actually stayed in bed until almost 8:30am, because the girls woke up late and Johnny headed them off because he figured I needed the extra bit of rest. And I guess I did!

I wasn't too surprised that I needed a catch-up night of sleep. I'd had some late night manufacturing calls with suppliers in other time zones, and Johnny and I have been allowing our bed time to slip into the 11:30pm realm...which we both know is too late. But what was so eye-opening about this almost-12 hour marathon, was that I woke up feeling so good. I was completely rested - and I realized that on those nights when I only get eight to eight and a half hours of sleep, I wake up tired. Not lupus tired, just the normal I-wish-the girls-had slept-later tired, or I-shouldn't-have-read-that-last-chapter tired. Nothing that impacts my day, but definitely something that I now know doesn't have to happen.

So now that I've had a taste of how rested I can be, I want to wake up that refreshed and ready every morning. It's just as the author of the article cited in Wednesday's post said - we don't know how compromised  our well-being has been until we've had a taste of how good it can be.

So it's back to a 10:30pm bedtime. That almost always ensures 9 hours of sleep at night - which is my sweet spot. I can try and convince myself otherwise, but it won't work. Now I have my recent 12-hour experiment to prove it!


megarific said…
Just wondering if you are on medication now. I am on a ton of medication and while I am medicated do not experience any of the symptoms of lupus. I hate the medications and for me living medication free would e a dream.
Sara Gorman said…
Good question! Taking all of those medications can be one of the worst parts of lupus - the side-effects, the limitations, plus the cost and inconvenience - it all adds to a real pain. That said, I'm glad to hear that you're symptom-free. It really is crazy that all of those drugs can actually keep your symptoms at bay.

But to answer your question - I am still on medication, but a sliver of what I used to be on. Today, I take 400 mg of plaquenil (2 pills), 5 mg of prednisone every other day (1 pill), and 100mg of Cozaar (1 pill). Compared to the dozen or so I used to take, this is a miracle!! As far OTC drugs, I also take a baby aspirin (1 pill) and calcium supplement(4 pills total), per doctor's orders. I used to have the dream of being off meds completely, but I realized that even cutting the number of prescriptions I had in half was a big first step. Some people are able to be off all meds, but I found that I became discouraged when that was my end-goal (and I wasn't reaching it). Instead, I decided to work closely with my doctor to get on as few drugs as possible while still keeping my disease activity at bay. That's what worked for me - both physically and emotionally. And it took awhile - I definitely took baby steps to eliminate, with my doctor's help, one prescription (or two) at a time. That way, I minimized the risk of a flare, and it gave me something to work toward. Of course, I made lifestyle changes alongside the medicine changes...and I'm sure the two worked in conjunction with one another. Best of luck!
megarific said…
Thanks so much for your note Sara. Finding your blog has been a huge relief and help to me in dealing with all of this. After suffering from all sorts of horrible symtoms for close to a year they have me on the prednisone, plaquanil, cellcept combo which works well but the prednisone sucks. I am on a pretty aggressive tapper down from 60mg a day. I noticed you are not on cellcept now but you also called it your miracle drug does it not work for you anymore? I really appreciate your blog:)
Sara Gorman said…
Good question. I loved being on Cellcept- it did everything I needed it to, and I had no side-effects. However, it wasn't safe for pregnancy, so I had to put plans for a family on hold while I was on it. After 3 years on the drug, I decided to test the waters and see if I could go off Cellcept, replace it with a combo of plaquenil and prednisone (both of which were safe for pregnancy), and still keep my disease activity quiet. And it worked! After transitioning off of Cellcept very successfully, I waited three months, then started trying to get pregnant. Nine months later in 2008, Baby Deirdre came along. I stayed on plaquenil and prednisone because it was working just fine, even post-pregnancy, and then I had Bernadette in October of 2010. I continue to do well on my present combo.

My doctor and I did talk about Cellcept as an option when I had such high levels of protein earlier last year, but the Cozaar seems to be doing the trick. For me, I've opted to keep Cellcept as a big gun when nothing else is working. That said, my measly 5mg of pred. every other day doesn't give me any side-effects, so that's a big reason I'm fine with my current regimen.

And don't underestimate it - coming off of 60mg is a BIG deal. The tapering isn't fun, and the side effects of 60mg aren't fun either. Fingers are crossed that with Cellcept, you'll be able to wean off of prednisone (or close to it) and see the benefits of minimal steroid use! I hope it's around the corner - it will be lovely once you get there.

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