Friday, October 2, 2009

9 hours of sleep equals...

a rested lupite!


Last week, I blogged about my napping dilemma - the fact that my body seems to be stuck on two naps a day, rather than one nap. The problem arose when I had to change my nap schedule to match Deirdre's in August since my babysitter was on vacation. Since she's been back, I've been stuck on these two-a-day's (getting sleepy around 12pm and then again around 4:30 or 5pm.) I was giving into it - first of all because it's good to nap when you need to, but also because exhaustion seems to be one of my lupus triggers - and I saw no reason to tempt fate.

However, I think I've recently figured out the secret to singular daily napping! The best way to ensure that I don't get sleepy around noon is...drum roll please...to get plenty of sleep during the night.

Alright - so half of you are saying, "duh!", while the other half may be skeptical that I'm pushing my limits when I really need an early nap. (Take a guess at which half my mom is in!)

But I'm telling you - until I started getting 9 to 9 1/2 hours of sleep at night, 12 noon would roll around and I'd be yawning and rubbing my eyes. I had to take at least an hour rest...but then that hour (or even 2) didn't seem to be enough to hold me over until bedtime. I'd get that sleepy, glassy-eyed look in the late afternoon - and I just couldn't shake it. BUT - with 9 1/2 hours under my belt, 12pm comes and goes without a twinge of fatigue. I can make it until about 2:30 or 3pm...and then I'm ready for a good hour and a half (to two hour) nap. What a relief! So happy not to have to hit the sack three times each day. That's a lot of pillow fluffing!

For me, this post brings up an interesting distinction - the difference between fatigue as a trigger of lupus and fatigue as a symptom of the disease. Here's the way I look at it:

Fatigue (and I think exhaustion can be substituted here) as a trigger means that when you push yourself beyond your limits, tire yourself out, skimp on rest, and ignore signs that your body is tired - your body can't take it and a lupus flare begins to take shape. For me, Pre-flare Phase I means my joints begin to ache, one or two may swell, and my throat gets scratchy, hoarse, and a little sore (and I get tired - which is my symptomatic fatigue kicking in.) During Phase II of this precursor stage, I sometimes run a fever, my glands swell, and I definitely have trouble focusing - both foggy head and vision issues set in - and my symptomatic fatigue gets worse. However, even at the sign of a single digit swelling (phase I), I can usually hop in bed, take it super (and I mean SUPER) easy for a good day or two, take my medication as my doctor has prescribed during my pre-flare phase, and I can stop lupus in its tracks. (Knock on wood!)

Now, fatigue as a symptom means, to me, that you're faced with overwhelming fatigue wherein it's in your best interest to give into it (like my need to nap.) This is important, because if you don't, this overwhelming fatigue can turn into paralyzing fatigue, making it difficult to function on many levels - walking, talking, eating, breathing - rendering you an exhausted mess. The fatigue is debilitating - and as a symptom, it's awful. I mean awful. It's very difficult to describe lupus fatigue to someone who hasn't experienced it, but those lupites out there reading along know just what I'm talking about. It's the worst - and it can prevent you from doing, going or saying anything. It's that bad.

I consider myself lucky, because my symptomatic fatigue is slow to develop...so if I can catch it in Phase I, and do what I'm supposed to (like sleep double the amount I normally do during the day plus a whole host of other things), I can escape the debilitating, paralyzing fatigue experience.

Which leads me to the question - which symptom of lupus is your least favorite? I know, I know, it's hard to choose - but take a look at the poll on the right and try to pick one. Come on - it will do you good to hone in on your worst advesary!

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