Okay, it’s time for a spelling reminder. I am a regular visitor to the Sjogren’s World Forum & other forums related to my medical conditions. It seems like at least once a week I see this headline..Is This A Flare/Flair?
I used to be a wonderful speller and would have never needed to remind myself of how to spell a word..or needed to look up which word with the same sound but a different spelling, meant which concept. But sadly, I did just that this week.
I will start by refreshing your memory (if it works like mine).. Flare = Burn with sudden intensity, while Flair = A natural aptitude or ability. So there we have it..when referring to our sudden Sjogren’s body uproar manifesting in our joints, or whatever body part it has decided to attack., we use the F-L-A-R-E spelling/meaning. So while it would appear that SjoDry has a “flair” for chronic illness, it is actually just a severe immune deficiency which caused autoimmune conditions with periodic flares of increased activity. Simple right?!
Does Anyone Really Know?
Not only do I question my spelling of it, I have decided that I don’t think I even know what a flare is as it relates to my own Sjogren’s Syndrome. And I am not sure that many Sjoggies know either, since they continue to ask the question. The issue is that Sjogren’s manifests itself in everyone differently and to varying degrees. In my experience, the disease presents every day, like a bad roller coaster ride that never ends.
My day-to-day symptomology is all over the place. Some symptoms (like eye irritation, nose dryness or desert mouth) have variability in me, while other symptoms like FATIGUE and PAIN just seem to move in one singular direction. Down ~ as in, to the the floor or bed as a result of my fatigue. And UP ~ as in pain intensity.
Perhaps there are Sjoggies out there who recognize a pattern of Sjogren’s functioning in their lives and can identify this phenomena we call a “flare.” In fact, some may even be able to pinpoint a trigger to these flares. And then there’s me. I just seem to stay in this fairly constant window of crappy functioning that never goes away. Think ‘treading water’ while in lava.
The MED-EVIL Conditions Have Joined Forces
Of course I must consider the fact that my functioning may be totally different than others who do not share my co-morbid medical conditions. For instance, my immune deficiency and my autoimmune issues both cause some of the same symptoms. I suppose it is possible that my symptomology could be more intense than someone who does not have multiple diseases with similar symptoms.
And even while I do share some of the exact same conditions as a couple of the Sjoggies on the Sjogren’s World Forum, we are still not affected to the same degree with our symptoms, or level of functioning, or lack thereof in my current state.
All Flares Are Not Created Equally..
Or are they? The reality is who knows. Of course they are subjective. Pain and symptomology are in the eyes of the unfortunate beholder. To the individuals who experience them, they don’t get any more real. And none of us would wish our chronic illness or the flares that go with them, on anyone.
For me, I don’t see distinct periods of symptom intensity as a flare, as much as I see it as just a part of the hills I climb on my daily roller coaster ride. I can’t put my finger on a starting and stopping point of pain or symptom intensity, which it seems like a flare should have. Even with the dips and valleys of my daily ride, there is no significant deceleration or lessening of my symptoms and all of their effects. So I guess that it depends upon your definition of a “flare” and what that looks like in your Sjoggie world.
The Ride That Never Ends
I suppose that just like the scenery on a roller coaster ride, my chronic illness is one big blur. Occasionally, I see parts and pieces of the old me, with dashes of brightness and darkness. I never know whether a storm is coming, a machine malfunction or what’s around the next curve. But good, bad or ugly, I am on the ride of my life.
I’m ready to get off of this ride, how about you?