Wednesday, September 12, 2012

The True Meaning Of A Flare

After ending my travels about three, nearly four, weeks ago, I was totally exhausted.  I assumed that it was just jet lag.  But as the days move forward, and the start of school approached, I realized that the exhaustion I was feeling was not related to traveling, at least not completely.

And after going to kickboxing this week and barely making it through, my fear, what I had been denying for the past several weeks, was confirmed:

I’m flaring.

I honestly can’t truly remember the last time I had a full-blown flare like this. 

While the Humira is keeping my joints fairly mobile, it hurts to move.  I hurt from the soles of my feet to the top of my head.  And as the days move forward, I am noticing stiffness creeping back in. 

And I’m exhausted.

With lupus, it’s the type of tired-ness that doesn’t go away, no matter how much sleep you get or how much coffee you drink.

And it’s mind-numbing.  It’s hard to concentrate on anything. 

The bed and the couch are my best friends right now. 

The other day, I showered and dressed at 2 p.m., went to class, and came home and got right back into bed. 

When I posted about the flare on Facebook, someone asked me what I meant.  So I got to thinking about how you explain the true meaning of a flare.

If you look up flare in the dictionary, you’ll find things like an eruption, an outburst, most having to do with light, but all having to do with a certain amount of intensity.  And this is, while we aren’t quite talking about the same thing, fairly accurate. 

But when those of us with lupus, rheumatoid arthritis, or any other conditions in which you can experience flares, what we are referring to is a flare-up, which is a significant and usually unplanned increase in symptoms.

For me that means pain and fatigue…times a million… 

It’s like my body is sending off flares, signaling that there’s a problem or I need rest or something.  That’s what I am still trying to figure out – what exactly it is that my body needs right now.  

Usually when I flare, my illnesses feed off of each other, so it’s not just one or the other that’s flaring.

It’s both.

I feel it in my muscles and my joints. 

It hurts my arms to type this post, and it hurts to hold a book in my arms for too long. 

I already had scheduled an appointment with my primary care doctor, so I decided to go and see what she thought I should do.  She got in touch with my rheumatologist and he thinks this could be side effects from the Humira.

Oh, wait!  I read about this.  Yes, in the side effects of Humira was the phrase “lupus-like syndrome.”  And the thought crossed my mind, “Why would I want that when I already actually have lupus?” 

This might sound stupid, but I feel like the last time I was really flaring like this, it only lasted a few days, so I pushed through.  But this time, it’s not subsiding.

I think the traveling, the change in weather, and the fact that I guess I was due for a flare are all contributing to my current situation.  And I guess the Humira is, too. 

It’s hard to explain how your whole body can hurt, but you can still look semi-okay on the outside.  For those who really know me well, they can tell by my voice and my posture that I’m not feeling well.  But for the rest of the world, I feel like I’m dying inside, but in some ways, I have to go on living. 

I’m not in a position in my life right now to really be able to nurse a flare.  It would be nice, but I have teaching responsibilities and a dissertation to write. 

I’m starting to learn the wisdom of the daily nap for people with lupus.  When I was on vacation, it was nice to be able to sleep late, take an afternoon nap, and feel pretty good.  Maybe I’ve gone too far in the opposite direction.  There were a few days right before school started that I pushed really hard to get a bunch of things done.  And then I needed a day to recover. 

I didn’t miss this. 

Everything feels like work.  Climbing the three sets of stairs to my apartment is an activity ripe with exhaustion.  So is cleaning.  And grocery shopping.  Things that feel like nothing on a good day, or are normal activities for most people, are feats of superhuman proportions. 

There are definitely days where I leave lupus and rheumatoid arthritis behind, in the dust, they don’t stand a chance in my tracks.  And then there are times like these, where their ever-presence makes it impossible to forget that life isn’t always like this.  That this too, hopefully, shall pass.  And the sooner, the better. 

I wasn’t planning on submitting anything for the September edition of PFAM, but decided that this post fits nicely with the theme of “You know you have _ when _.” 

1 comment:

  1. Thank you for this post! I am new to this RA diagnosis and in fact just said to my husband today that I am confused about what I think a flare is....haven't seen much about it on web sites. You however have described ME!!! I can totally relate to your description of a flare.

    it's so nice to know I'm not out of my mind, but there are others who know how I feel and what I am experiencing. Thank you! Just wish we could all feel better:)