Respect The Flare

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Published on Thursday, 12 July 2012 22:52

Written by Jules

Where does it come from? How long will it last? And always, as often as we swear we won't ask, ok I won't ask: "Why me?".

The Flare.

It comes on, and I feel it coming. First the hints of fatigue. The vaguest increase in my pain. The subtle beginning of my disconnection from the world. I turn off from the things I care most about. No reality check when the flare starts to kick in.

"What's wrong?"
"I dunno"
"Can I help?" 
"No, not really."



In my head, the answer is "Do everything, but don't make me ask, just get it all done and and don't make me ask for it."

Selfish is the flare.

Then, I wake up. I wake up from a nap, I wake up in the morning, I wake up from the staring into space of contemplation to a black out of anything real, and it's flare time.

The best thing I could possibly do is just go to bed. Just go to bed and ride it out. Take the meds that make it less annoying, less painful, less everything that makes flare what it is. Nothing makes it go away but time, but things do make it less completely hellish. Yet, I don't do all of the things I should do. I am never really sure why, but I suspect it is because I don't respect the flare. I don't want to give in to the power that it has over me. It's the last hold out of this thing called autoimmune that has, except for the choice I have to sometimes ignore it, the power that a flare has to totally take me down and make me feel like a wallower in suffering. If I can ignore the flare for any given second that it is nailing me to my resting place, I still own myself. I want to still own myself.

I don't always own myself. To a person like me, that is a really hard pill to swallow.

You can tell me that anything that has to be done, anything that would be the best thing for me should be done without question, and if it wasn't what I wanted to do at that moment, I won't do it. I am stubborn. I am so stubborn that I will fight the flare, make it last longer and hurt more, just to prove that I own me. I am the boss.

Ok flare, I am not the boss. You, evil enemy of me, you are the boss. I relinquish my control and give you the reigns for the periods of time you take me, and let you steer the beast where it may go. I will learn to respect the flare.

I still find it funny that there are people, as long as they have known me, that think that being forced to bed for days or a week, consider that some sort of a vacation. This is not something that anyone would buy a ticket to, or trade in the hard fought airline miles for. A week in bed is not the John and Yoko love in you might even possibly imagine it to be. Even if you are a lucky one, one of the very few of us with chronic illness that has someone who would bring you every meal in bed, help you bathe, bring you gifts, and rub voltaren gel where it hurts, there is nothing about a flare that brings to mind Club Med, and there is no T-Shirt you want to get at the gift shop that would make this shit worth it. This is no vacation. This is not worth the sick days you have saved up.

Respecting the flare is about taking the full time it takes to get past it. Getting past it is not about waiting to wake up to the day you believe it's gone. It's about waiting a day or even three beyond that. There is a hangover to the flare that must also be obsevered. A mourning of that time. I learned that well this past week.

I had a pretty kick ass flare that started on July 4, mid day, in a mall. It just hit me while we were shopping. I was fine one minute, then then next I was staggering for a chair, needing to sit, needing to just go to sleep. We went home and I rested. I thought maybe after my nap that things might be ok, and that I was just tired. We started moving around our lives a bit again and then I was struck again, dead in my tracks.

Respect.

So, to bed I went. I slept on and off for a few days, but never really got down and dirty into the flare. I never really got into the bunker of the flare and took cover. And, when I finally did, I was on the outward climb of hell, and I started feeling better. So, I started about my life again. Monday I drove an hour to get some errands done. I hit a snag with the pharmacy and had to deal with doctor bullshit. Monday night I felt like crap and suffered a bit. Tuesday came. I took a walk into town, took myself to lunch. I hit a few little life snags, no big deal really. I know it's not every day you discover your debit card has been hacked, but I worked it out. Tired, I went to bed early knowing I was still recovering. Wednesday I went into the office and worked a full day. It was an early day too, getting the dogs into the groomer by 7:30 AM, a late arrival for their 7:15 appointment.

Oh Jules, that's no respect right there. You gotta respect the flare.

I kinda lost it Wednesday night. We did a fun test show for WhatTheJulesLIVE and then some shit went down. I walked to the park in the cold and that was just, straight out, disrespectful and stupid. Neuropathy took full hold.

Jules, you did not respect the flare.

I cried in my bed for about an hour, cried until I slept. Slept until I woke with the realization I had not eaten since three the previous afternoon. Woke with nightsweats. So I ate, I medicated, I slept a painful and restless sleep.

The flare was fighting back, telling me it wasn't over. Telling me that if I had just rested, just cut it some slack, I might have been better by Thursday, but I was going to be punished for my insolence.

Thursday morning came with the searing, the burning, bone tearing take your breath away kind of pain that said "You get your ass back to bed, you do it and you do it now."

And I did.

At 11:00 AM I moved to the couch.

At 6:00 PM I woke up. Shocked at the time, starving, still in pain.

I have taken it easy the rest of the day. I took a bath, I walked to the elevator in my pajamas. Ding... Ding... Ding... down four floors and out the gate to the park with the dogs. I sat while my dogs were walked by my ever constant and caring companion. Back up the stairs, to the TV and to catch up on everyone that I blew off for the day. Then we had dinner delivered. And, I sat.

It's 10:30 now. I am going to try and sleep. It's going to take a lot on the medication front to knock this horse down. Not because I slept all day, but because the pain is prodding me awake, keeping me from finding a comfortable position. Part of respecting the flare is taking full advantage of the tools our medical professionals give us. This is why we have these medications. I am going to use them. I am going to sleep the flare off this time, I am going to respect it. I am not going to get up again until I know not only that the flare is gone but that I have recovered from the flare. That's respect.

The next time I think about getting around, or over a flare, I am going to remember that you can't outfox the slyfox. Flares are smarter than us, flares are meaner than us, and flares have no compassion for a damned thing that we care for. I will respect that about a flare. I will always keep my friends close, but I will keep this enemy much closer.

Jules

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