Wednesday, September 28, 2011

Lupus fatigue: From "Not Tired" to "Tired" in Sixty Seconds

I know I'm prone to fatigue, and I know it can come on fast - but sometimes I forget how fast.

Lately - I've been pretty good about starting my nap at a decent time every afternoon. It helps that the girls start their afternoon siestas around 1:00 or 1:30pm - I have no excuse but to find my way into bed at least by 2:30pm. I can lollygag for only so long - the quiet house, the still children - it really does make for a great napping environment.

That said, Deirdre and I decided to push the envelope one day this past weekend. Her sister went down around 1pm, but she and I were feeling good. Not a sleepy eye in sight - and we decided to capitalize on it. At about 1:30pm, I suggested we take a walk. She decided to ride her bike, and we took Darwin and set out for a leisurely stroll. I figured we'd return by 2pm, and I could have Deirdre down by 2:15pm. I could still make my 2:30pm goal without any trouble at all. In fact, my energy level when we walked out the door was so good, I even thought about what I would do when we returned - I figured I'd have a few minutes after I put Deirdre down to fit in just a quick to-do. Nothing fancy - I still knew I had a 2:30pm deadline to make.

But I didn't make it until 2:30pm. I didn't even make it until 2:15pm. At 2:05pm, it was like I just crashed. It was that wall of fatigue that we lupus patients talk about so often - that wave of complete exhaustion that washes over you in a way that almost debilitates and suffocates. It was and is an awful feeling - particularly with little Deirdre at my side - but thankfully, we were already home from our walk, and her Dad was able to step in and take over.

That fatigue just came on so fast -it was like instant deflation - like I'd suddenly taken my foot off the gas, and I just...stopped...moving...forward.

Of course - fatigue comes with the package. I know this. I take my nap because of it. But I didn't see this wave coming - and I didn't like being blindsided. But - I knew I was pushing the limit. I knew it was a risk taking a walk at 1:30pm. Deirdre and I could have just laid low, done a puzzle, flipped through some magazines, or read a book or two. We could have sauntered upstairs, and she could have been in bed by 2pm. I might or might not have have felt that fatigue come on - who knows? Maybe I would have hopped into bed, and never felt the wave of exhaustion, or maybe I would have felt it, but from beneath the covers, snuggled up in my bed with my eyes closed.

Either way - I won't forget the error of my ways. It's not a big deal - but I could have made it a lot less of a deal, had I just played it safe. It does remind why I take a nap in the first place. If I didn't, I would feel that wave of fatigue every single day. And it wouldn't just be once a day, it would be multiple times a day, which would eventually run together so much so that it would feel like I was fighting that debilitating fatigue every moment of every day. And who wants that? Who needs that? Who can function like that?

If there's something I can do to prevent myself from ever feeling that constant fatigue again - you better believe I'm going to try. Bring on the napping hour - I'm a believer!

8 comments:

Sadaf Shaikh said...

Thank you for this post. I thought I was the only one who went from "not tired" to "tired" that quickly. It's hard to explain to other people, especially kids, that you have to go to bed NOW. At times like that I can sleep anywhere - on the couch, the floor... on a desk lol.

Iris Carden said...

There's nothing like missing a nap to suddenly make life very very much worse. It's worse than missing pain meds!

Three K's and Two P's said...

I too appreciate so much you writing this post. I am here at work and started bawling when I read your description about the feeling of exhaustion--that wave of complete exhaustion that washes over you in a way that almost debilitates and suffocates. I have been suffering so badly the last few weeks and every day experience this fatigue, multiple times per day. It's so hard to explain to those around me but you explained it so well. Thank you for you blog and for you book. I am just trying to cope now with my illness!

Anonymous said...

Thank you for making me feel not alone. My fiance is in denial and caught up in his own world. My teen daughter helps so much with My son who is a toddler. often so I can nap. this comes with guilt. but I'm generally so desperate for help because, I too, cannot fight the sudden fatigue crash. you are lucky you have a spouse that helps.

Sara Gorman said...

Sadaf- believe it or not, I'm just seeing your comment now! That fatigue is quite the lupus enigma, isn't it? Trying to preempt it is the only thing that seems to work for me. so glad you understand!! hope you're well.

Sara Gorman said...

...and missing pain meds is a very, very close second. :)

Sara Gorman said...

just seeing your comment now, but i appreciate your thoughts! I hope your fatigue has improved, or that you've been able to manage it in a way that works. I recall the daily multiple bouts of fatigue make it seem like the whole day was a loss, so i hope you've found a way around it--be it a nap, long lunch, etc. Take care!

Sara Gorman said...

I'm glad you have help, but i do hope that you're able to finagle more. and don't feel guilty--you're a better mom for napping, and your lovely daughter no doubt knows that. take care....