I was recently feeling a little tired but was still able to function. I went to breakfast with a friend on Saturday and struggled to sit up once I returned home. I lay down around 1 p.m. that afternoon and didn’t get up until Monday morning. Showering took what little energy I had, so I moved from the sofa to the bed.
The unfortunate thing about exhaustion is the intense brain fog. I like to play Word Scramble on my phone, but even that was difficult. On a good day, the words are basic, but when my level of exhaustion is high, they become quite the task.
Now some of you might be wondering why I care. It’s just a game. But I often lack energy and brainpower. Thinking, writing, and working become a challenge as the day wears on. My inability to do something as basic as unscramble some simple words becomes a point of frustration.
For some reason, many believe that I receive disability pay because of lupus. I can assure you that I do not. I am a freelancer. I earn my income online. I’ve missed deadlines or submitted projects that needed significant revision, but I am fortunate that my clients understand.
My friends and family say I’m an overachiever and that I work too hard, but when I have the brainpower, I take advantage of it. If I have three days of good energy and no brain fog, I will work a 14- to 16-hour day. I try to stay ahead of the curve, and not just for my clients. If I don’t, I can’t pay my bills or put food in my fridge.
I have things that I enjoy and things that I must do. Sixteen-hour workdays limit the things I enjoy. I decided that either Saturday or Sunday would be a sewing day, but I came home from breakfast on Saturday and spent the weekend on the sofa. Now it’s the middle of the week and I haven’t sewn a thing. Also, I’m still in bed! Even standing to prepare a meal exhausts me.
Lupus is unpredictable. Triggers exist, but you never know what will cause a flare and incapacitate you or land you in the hospital. Whenever I go to the hospital, I take my computer with me. No matter how much pain I am in, I cannot take a chance on losing paying clients.
I’ve been trying to be more consistent with work and the things I enjoy, but this recent bout of exhaustion has me a little bothered. I’m angry because I feel like lupus knows my intentions and purposely sabotages me. I have income goals for the beginning of the year. Four days without the ability to function above a basic level is a major setback.
I have things that I want to offer my clients, but my inconsistency means that clients could see me as unreliable. I think people who do not live with chronic illness believe we lack ambition, expect others to pick up the slack, or are lazy. But that is the furthest thing from the truth. Sadly, we have no idea from day to day — or hour to hour, for that matter — what our bodies will deliver.
My life is quite inconsistent, but when I get a moment of true clarity, I take full advantage of it. I write as many columns, create as many graphics, and schedule as many posts for my clients as I can.
Sewing can wait, but I wish it didn’t have to.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.
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