Friday, June 24, 2016

Lupus fatigue - hitting the wall means no decision making for me!

Lupus fatigue. It can be one of the most disruptive and debilitating symptoms of the disease. When I approach my daily wall of exhaustion, typically between 1:30 and 2pm every afternoon, several things happen. One, I start yawning. Two, my eyesight starts to get blurry, and my eyes itch. Three, I struggle to articulate my thoughts, and have trouble finishing my sentences. Four, I lose track of what I'm doing (like, "I have a spatula in my hand, but what was I doing with it??") And five, I become very quiet, probably because I'm struggling to put thoughts together. For my family, my sudden, atypical silence is the primary signifier that I am fading quickly.

Because I've suffered from daily lupus fatigue for many years, I try to preempt this level of exhaustion with a daily two hour afternoon nap. Hitting the wall is a very unsettling feeling, and I avoid it at all costs. It's one thing if you've been up all night, or had a brutally taxing morning on which you can blame your fatigue. But most lupus patients would agree that the debilitating, immobilizing fatigue one feels on a daily basis is brought on by no such circumstance. It's simply lupus - where an overactive immune system causes inflammation or pain throughout the body, or another side-effects of the disease, that the body then responds to with ovewhelming fatigue. 


When I do hit this wall of fatigue - I know I'm incapable of doing several things:

Carrying on a conversation (just ask my husband)
Driving a vehicle
Negotiating anything (just ask my daughters)
Eating (because I'd rather just sleep)
Working, exercising, or exerting any significant level of energy, because physically, I can barely hold myself upright.

When I'm healthy, I can successfully manage the fatigue with my nap, as mentioned above. When I'm in a flare, or feel one coming on, I often feel overwhelming fatigue several times a day, and have to adjust my schedule to accommodate multiple rest times in the morning and afternoon.

But sometimes, like one day last week, I make poor choices throughout the day, and find myself crashing around 6 or 7pm.

I'll tell you more about the mistakes made throughout that day in an upcoming post - my lupus missteps always make for such great posts, don't they? But suffice it to say that by 7pm, I found myself drained of energy. We'd spent several hours prior at the pool, and as we finished up our evening poolside, I found that I was avoiding conversation, rubbing my eyes, and making very little sense when asked direct questions. All signs that I'd overstayed my welcome.

But in an effort to right one of my wrongs from earlier in the day (not eating enough), I thought grabbing a bite would rejuvenate me.  I hadn't hit the wall yet...and hoped that I could turn things around. Thinking I could handle the menial, routine task of ordering dinner, I went over to the poolside grill, and placed my order: a super food salad whose main ingredient is spinach.

Anyone want to take a guess as to who here is allergic to fresh spinach? Me!!!

And that's when I realized there's yet another thing with which I have difficulty when I'm approaching the wall: making a decision.

I've never ordered that salad before, and never will again (at least as long as I have an allergy.) But because I was tired, and because my thoughts were incoherent, I ordered something I could barely eat. Looking back, I think the acai yogurt dressing sounded appealing, as did the candied walnuts. But when I'm too tired to think, I'm not able to sort out impulse from rational thought, or whatever you want to call it.

Salad aside, the evening did not take a nose dive. Johnny drove us home once he witnessed the spinach incident (I wasn't really interested in eating anyway - see itemized list above), and he helped put the kids to bed, so I was able to get the good night's sleep I desperately needed.

But that dining experience, as insignificant as it may seem, explains so many instances over the years where I've flaked on decision making at various times throughout the day. Be it ordering food, choosing a movie, or voicing my opinion, I used to berate myself for my poor choices. But this was a good reminder that when I'm tired, I need to delegate the decision-making to a responsible party. I'm so thankful Johnny (and the girls, my sister, etc.etc,) are usually up to the task.  (After the fact, my sweet husband said that he would have gladly ordered for me, had he known how tired I was. I'm sure his choice would have hit the spot!)

You can read about other posts regarding lupus fatigue here. Know that you're not alone in your exhaustion!






4 comments:

Pia said...

Good to read this right now. Crying out of plain exhaustion. Somehow it feels less scary/ alarming from reading this. Thank you!

Sara Gorman said...

I'm sorry the fatigue is at an all time high! I wish you peace, rest and relaxation. And a good nap.:)

Roxy.Bee said...

Thank you for sharing. I'm at the very beginning of diagnosis and knowing to be self aware sounds like a great start and delegation, another.

Sara Gorman said...

Hang in there! It's tricky to take it all in at the beginning, but focusing on the things you mentioned would be a great way to start. Take care!