Life With Lupus: Flare

TJ Wolf

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Lupus

I have the 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.

So What Exactly Is Lupus?

In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.

Flare

So the timing of this week's article is no coincidence. I've been in another Lupus flare for almost 2 weeks now. I feel like I've been going 10 rounds in the ring with the wolf and he keeps knocking me to the mat. Some days I stay down on the mat for hours and hours. During two recent sick days I actually slept a total of 18 hours the one day and 16 hours the second day.

Other days I have no choice but to pick myself back up due to work. That's pretty much the only commitment I can handle right now. All I do is sleep and work lately (work from home fortunately). I've even resorted to dictating articles via my iPad because it can be painful to type or sit at my desk.

Unfortunately I cannot do my full time job on my side from bed, although it seems many of my coworkers try it and frequently forget to blur their virtual meeting background. Well better that than the bathroom.

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Fatigue

I've seen Lupus fatigue defined as "profound fatigue."

I had never heard that term before having Lupus, but I can say whoever coined it, nailed it.

Profound is defined as...

  • difficult to fathom or understand
  • extending far below the surface
  • characterized by intensity of feeling or quality
  • something that is very deep

...and I can tell you that all the above apply in terms of fatigue.

With a Lupus flare the fatigue can be debilitating. And for someone with Lupus that can be very difficul for friends, family, or coworkers to understand. When you are sick with a flare, you are not sitting comfortably in bed propped up with pillows, some tea, chicken soup, and binging streaming shows or movies. You are out for the count. You feel like you were hit by a truck with the big bad wolf at the wheel.

Something as simply as getting up to take your medications, eat, or use the bathroom can have you in a state of anxiety over whether you can walk to your destination without collapsing. Think about that for a second? When's the last time you couldn't walk 10 yards without feeling like you would collapse? With Lupus and flares many of us feel that way all the time.

The most comparable experiences I've had in life and I can offer to have a better understanding and empathy are...

  • Pneumonia
  • Influenza
  • Anesthesia
  • Alcohol intoxication to the point of passing out (not proud of that one by the way)
  • Sports competition where you collapse at the finish because your body gives out

But unlike most of the above, there is no recovery where you bounce back and say "I feel better!" or "I feel great afterward!" Recovering from a Lupus flare is like shifting your car into low gear after a stall. There is never a true "bounce back". Fatigue is your functional norm, flare fatigue is debilitating.

And unlike fatigue from Sports competitions there is no "suck it up" or "push through it". It's a wall you hit. It's the equivalent of giving someone anesthesia and then yelling "don't go to sleep!" or "dig deep and stay awake" and the person is still out unconscious within 5 seconds.

This last point being something I know from coworkers and friends cannot understand. 'What do you mean you have to go offline and not finish "x" today?' and meanwhile you are worried you will collapse right then and there at your keyboard. Motivational tactics like "suck it up just a few more hours", "you should plan better", "you need to be more organized", and "you don't have your priorities in order" are lost. You might a well say the same things to a boxer KO'd on the mat on Live Pay Per View.

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Pain

Flares can also trigger a massive amount of pain from inflammation within your body.

A flare means active Lupus disease, so that means the wolf is uncaged, on the prowl, and has targeted cells, tissues, and/or organs for its kill. Inflammation can be extremely painful.

And many times you have no idea what's going on inside you to cause the pain.

At times it can even be inflamed nerve endings that are sending pain signals when no true pain exists. Other times you can tell exactly where its coming from in the form of symptoms with joints, cardiovascular system, or your gastrointestinal track. All of these being my own personal symptoms.

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Anxiety

To compound everything going on due to your flare, anxiety can play a role too.

Life with Lupus is extremely worrisome as you do not know what the future holds for you or even what the next day or hours will look like. You can feel "good" one day and be totally debilitated the next day and be at a complete loss as to why. Especially when nothing like diet, rest, stress, sun exposure, medication dosages, etc. changed.

Having a flare can produce a ton of anxiety.

Thoughts of...

  • What is happening to me?
  • When will this end?
  • Is this the end?
  • How bad does it get before I go to the Emergency Room?
  • Can the Emergency Room even do anything?
  • Why aren't all the medications working?
  • Will I need to take even more high risk medications?
  • How will I function at work?
  • Will I lose my job or be demoted if I don't perform or a meet a deadline?
  • What will my child think of me bed ridden again?
  • What does my family think?
  • Do people I tell understand and believe just how bad it is? They must right? They call out for colds and headaches.
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Depression

With fatigue, pain, and anxiety already on the list, depression is hard to ward off or cope with as well.

And please spare those with Lupus the vain attempts of "snapping them out of it" with we all...

  • get sick
  • have pains
  • get tired
  • need to be strong
  • need to be responsible adults
  • need to suck it up once in a while
  • need to stop feeling sorry for ourselves
  • should be grateful for what we have
  • suffer hard times

Try telling that advice to their immune system which is busy trying to kill that person at the cellular level. Envision yourself telling that to a rabid wolf that's eyeing you up for slow, prolonged, and painful death from the cellular level the more you talk to it.

Yes, there are people with worse illnesses out there, more suffering, higher mortality rates, etc. I'm guessing they might be tired of hearing the clichés too.

And by the way, Lupus is pretty bad in its own right with suffering and mortality rates.

My Flare

As I mentioned early in the article, I've been in another flare almost 2 weeks. No worries for me please. Usually increased dosages of Prednisone will help me get the wolf back in the cage within a week or so. Already spoke to my Rheumatologist and that's the plan. Other options we may consider going forward are Mycophenolate or IVIG (Intravenous Immunogobulin) since we've exhausted other immunosuppressive medications to try due to allergy (Sulfasalazine, Benlysta) or increased liver function (Methotrexate) concerns. I do not have Lupus Nephritis, so either of those options will be tough to get insurance approval for. Will see.

The Wolf Within Me

Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.

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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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