Life With Lupus: How pain, fatigue, and goals can bring you down

TJ Wolf

Life With Lupus: How the pain and fatigue depress you

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Ghostlike image of a man standing in the middle of railroad tracks.Gabriel/Unsplash

About The Author

I have a serious and deadly disease known as Lupus.

  • The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE).
  • True to its name, SLE is a systemic condition throughout the body.
  • In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.

Disclaimer

This article is not intended to be medical advice.

The article is simply my own story as someone with SLE.

As always, you should consult medical professionals with regard to your own health and decisions.

What can bring you down?

What do I mean by "bring you down"?

Basically, what are the SLE impacts and effects that make you feel...

  • depressed
  • demoralized
  • melancholy
  • misery
  • gloom
  • hopeless

Pain?

Certainly, SLE-related pain is a huge factor.

It is relentless and at times paralyzing in the sense that any activity only makes it worse.

And with SLE-related nerve inflammation and pain, there can be no rhyme, reason, or pattern for when it strikes.

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Woman lying in bed.Yuris Alhumaydy/Unsplash

Being bed-ridden with relentless moderate to severe pain is enough to bring anyone down.

Fatigue?

SLE fatigue is often described as "profound fatigue." If you've ever had pneumonia, you may have a sense of just how tiring SLE fatigue is. But unlike pneumonia fatigue, there is no getting better with a return to normalcy.

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Message written on a person's forearm "Lately I been feeling so dead in my own skin."Dollar Gill/Unsplash

Although sleeping 16-18 hours a day to combat SLE fatigue may sound like an enjoyable stay-cation or rest, I can assure you it is not. The simple reason why being the world does not pause for you to rest. We all have responsibilities in life that do not afford only 6-8 awake hours a day.

Goals?

For me, this is the one that brings me down the most.

Yes, I hate the pain and fatigue immensely.

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Sign on building that reads "How are you really?"Finn/Unsplash

But the inability to complete tasks, goals, achievements, etc. wears me down immensely. It is essentially an inability for your body to execute and do what your mind wants to.

As a task and goal-oriented person who sets out each day with a mental list of what I want to accomplish, it is depressing and demoralizing to continually fall short in what I can accomplish.

These tasks and goals can include spending quality time with family, low-impact household chores, exercise, writing articles, and job-related goals.

But with SLE, the hardest task of the day can unexpectedly be mustering enough energy to get out of bed that day.

Of course, there is the advice of...

  • set your expectations lower
  • hire someone to do your chores
  • don't overdo it
  • accept you cannot do these things anymore
  • live your best life and don't worry about the rest

The advice is well-intentioned, but not well received. I'm still not ready to give up on what I used to be able to do in a day. And I'm not prepared to live each day as though I am at the end of my life. I see 80 and 90-year-olds with more energy in a given day than me. Credit to them and yet personal feelings of failure to me.

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Person wearing a cardboard sign that reads "Failure".Mick Haupt/Unsplash

So I fight hard each day, but I fail more often than succeed.

And that is what continues to bring me down the most.

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My primary mission is to spread awareness about the disease Systemic Lupus Erythematosus (SLE) and many of its comorbidities. Given most physical activities cause me pain nowadays, I've taken on writing as a new hobby, form of therapy, and method to interact with others. You will find I also experiment with articles related to business and careers.

Atlanta, GA
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