My lupus fatigue defined

Wow. That nasty little thing called lupus fatigue is a bear! As mentioned in my post on Monday, I had a bit of a flare-up last week, including joint pain, swelling, and fatigue, and I'm not going to lie to you - I'd forgotten how bad that fatigue can be.

Thankfully, the join pain and swelling I experienced wasn't awful. It was confined to one hand, and it was more annoying than painful. These days, one or two swollen digits actually serves as a pretty good warning sign for me - a signal that although more involved disease activity is brewing, if I act quickly, I might be able to stop lupus in her tracks. I just immediately have to scale back on my activity level, majorly ramp up on my sleep, and usually, I can prevent the disease from going any further. And per doctor's orders, an extra dose of 5mg of prednisone usually helps, too. (Please be sure to check with your doctor before altering your medication!)

But this time, the effects of lupus went deeper, and I wasn't prepared. The fatigue came out of nowhere - that overpowering, debilitating, "I'd rather not talk because it takes too much energy" kind of fatigue - and it's been years since I've experienced that.

Of course, I experience some level of fatigue every day around 2pm - but my nap seems to preempt that fatigue from becoming exhaustive and disruptive. As I was reminded last week, a real dose of lupus fatigue makes it difficult to walk, talk, or even think. For most of two days, I felt weak and slightly disoriented, making it preferable to sit rather than stand. I didn't want to engage in conversation, and it was difficult to make even the simplest of decisions. And I felt deflated and drained, as though my body was completely devoid of energy.

Now, before I end up writing a short dissertation on lupus fatigue, how about I just list a few snippets from my week, and see if anyone out there knows what I mean:

I felt so limp and lifeless at one point, it felt unnatural to lift my hands to hold the steering wheel. They just kept drifting down to my lap where they could rest.

I felt as though my vision was blurred - like there was a film coating my eyes preventing me from being able to focus visually. My eyes were grainy and a little itchy, too - not like allergy-itchy - more like sand-in-my-eye kind of discomfort.

It was difficult to muster up the energy to concentrate to read or write. There was even a sort of delay when interpreting short lines of text, commands, or requests (i.e. "Mom, can you help me with 'x'?")

Forming sentences seemed to be a difficult maneuver, too - I actually had to pause before I spoke - and I was anything but articulate.

Remembering things from 5 minutes ago was taxing, much less a day ago.

I moved in slow motion from the moment I woke up until the moment I went to sleep. I just couldn't get any momentum going, and it kind of felt like I existed in a thick fog that followed me everywhere.

I upped my naps to two a day at one point - and it still wasn't enough. I woke up just as tired, and even more disheartened, because of how tired I was.

One evening, Johnny asked me how my "processing power" was before he launched into some questions about some upcoming travel logistics, and I'm glad he did. I was in no shape to think critically, problem solve, or even engage in deep dialogue - so we held off the conversation until I was feeling better.

I felt very disengaged and disconnected, as if  I could see a version of myself moving around the room, doing things and carrying on at a normal pace. And while I wanted to be doing what I saw this efficient version of my self doing, there was no chance of mustering up the energy to even begin to move as quickly.

Lastly, the tell-tale signs that disease activity is upon me, is that I wasn't hungry, and I wanted to close my eyes whenever my body wasn't in motion.

So - there you have it. A very rudimentary, off-the-cuff description of what my lupus fatigue looks like. Anyone want to compare notes?


Aymie said…
Mine Is similar, but with a few added points.

I feel ready to start crying at any given moment, simply because I can't even begin to think. It feels as if every little thing takes a stupid amount of effort without showing nearly enough results. During one of my worst days last year I remember having to get out of the shower, mid hair wash, just to lay down. Then there's the pain of it... You try to lift your arms but can't because it just hurts.

The worst bit, I feel, is not being able to speak because you can't find the words. It's as if you can't think fast enough to get the words out. I had that happen to me last week in a meeting with my thesis supervisor... I sat there for a good five minutes trying to explain what I was trying to ask her, but it just wouldn't come out. She somehow managed to understand what I meant from a couple of drawings.

(And, yes, thesis supervisor! After a break of four years, I'm back to finish my degree while kicking lupus' butt! Sensibly, of course, with lots of sitting down and resting.)
Kristi Thomsen said…
Oh my gosh....thank you. This is perfect!
Cassie said…
Hi Sara,
I haven't written in soooo long because I was living through care giving of family, job responsibilities and added things that I just seemed unable to say "no" to on any given day. I was feeling pretty smug about myself since being on CellCept - I had turned the corner and left Lupus behind!

I was thrown back into the arms of Lupus with the same type of fatigue!! Yet, I kept trying to meet the task of holding a church reception for 100 people - all of the plans, etc. I woke up tired; existed all day long with such exhaustion there were moments when I really thought I had to be dying because no one could feel like that and still go on! One morning, I showered for work - not much pain but had to lay back down soaking wet because I didn't have the energy to dry off and get dressed. I didn't have the energy to think about the pain because the fatigue was so overpowering! How does it do that to us?!?!?!

The loss of appetite was incredible; I was too exhausted to eat and it just took too much energy. I loss about 5 pounds in less that two weeks. I had stomach and intestinal upset, that still lingers.

But, it's the fatigue that is so demoralizing! I kept going because I just hated to give into it and tell my family. So, the fatigue became debilitating. You're right - I couldn't think straight! Even the smallest thing - couldn't remember things; it took me twice as long to process and do anything I'm certain people thought I was losing my mind!

I seem to be gaining some ground but it doesn't take much to drive me down.

Sara and Aymie - you're both so spot on! Thank you both for sharing.

I feel like I'm back in touch with my Lupus "family." Thank you for being there. Cassie
Wendy said…
Thank you for describing this so well!!! Especially that inability to 'process' input, OR give intelligible output. Or make simple decisions! It's all VERY frustrating and very hard to describe, yet you did it so well. The weird thing that happens to me is being so tired but so used to pushing through that I can't even make the intelligent decision to STOP. Or I won't even realize that part of the problem is I'm overdue to take some med. Pushing beyond exhaustion and making things worse...this is what your book teaches us NOT to do. But even the best of us won't always be in full control ;-) . Hope you're doing better, Sara. Be well.
Terrie said…
Hi Sara,
I could have written that page today too. But I could not have remembered the words to write, as you stated in you post. Thank you for writing this Blog, I did one for a while, then I just to fatigued to even think, and most people asked why I was like that. well if they only knew how it is to have lupus. I draw and do illustrations to depicted how I feel at different time in a lupus flair. Now I have a group on Facebook and for me is much better, we trade secret ideas to use for different illness of lupus and what to watch out for. We keep it only love can be written on the posts, no bad mouthing or they have to leave but cuss words are allowed. Only support for each other and a safe haven to vent. You are so right on in your descriptions of a lupus flair. Thank you for sharing you life with us. ♥
oh yes, that is so so true.

I could relate so much to all of it. My cut off point is when I am not hungry. That's the line where I know once I cross it's a rough recovery back. Sometimes it happens and I am powerless to stop it. Other times slowing down, taking extra naps like you talk about can make all the difference.

I don't think people can understand that fatigue and brain fog unless they have been there. I had a person say to me "well I'm tired too" and I wanted to strange them :) it's so not the same thing as that extreme fatigue you feel in your bones and you can't move no matter how motivated you are.

Lupus has taught me to be in tuned with my body. To take time when I need it. It has taught me the necessity of having a balanced life.

Sara Gorman said…
Aymie - So glad to hear you're back to school! Sorry you have the challenge of managing lupus alongside a thesis, but I really appreciate your comments. knowing that you understand that inability to articulate makes it that much easier for me to cope with!
Sara Gorman said…
Wendy and Cassie - Thank you for understanding and sharing! You both mentioned this concept of not being able to think straight enough to stop - and I think that's a valuable statement for all of us to consider. I suppose the goal for the next time then, is to stop before we get too tired that we can't! I'll try if you will! :)
Sara Gorman said…
Terrie - I'll definitely check out your illustrations! I think whatever works for you is great - and I'm so happy to hear that you've found (and actually created!) a supportive environment to help you cope and manage lupus. It definitely helps to talk it through with others. i probably wouldn't keep my blog going otherwise!
Sara Gorman said…
Oak haven - I know - i don't think people really can understand if they've never experienced it. In fact, a business associate who's worked for a prominent lupus organization read this post, and commented on how she now has a much better idea what it means to have lupus fatigue. My hope is that it will in turn help the patients she comes into contact with! Thanks for sharing.
Kimberly Hoskinson said…
It is certainly hard to have some condition that you just can get away from. And it is good that you endure it, and can do things that some people with the same condition are afraid to do. I hope your thesis help you take your mind of the pain that are cause by your condition. Anyway, good luck in whatever things you like to do in your life.
Sara Gorman said…
Thanks for commenting and well wishes!
Anonymous said…
Hi Sara,

I'm relatively new to Lupus and if I'm honest I completly doubted the doctors once they diganosed me. even though my blood samples and kidney biopsy were all the proof I needed. I just felt like it was normal to have this overwhelming tiredness as everyone leads such hectic lifestyles but reading this post and finding your blog makes thing crystal clear to me. I need to learn to listen to my body the way you do, understand each feeling and sign. I too easily put things down to 'I'm just not a very energic person', which totally isn't true.

Thank you for your posts! Now I've found this site I will be a loyal reader!

Sara Gorman said…
so glad you found us! welcome to the world of lupus, and know that u are most definitely NOT alone. i'll look forward to hearing from u again...take care until then.

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