Friday, January 2, 2015

This is Not What I Had Planned

Yesterday I indulged in a good old fashioned sulk. You know what a sulk is, don't you? I considered using another word to describe what I was doing and how I was feeling but this definition is actually beyond accurate:

1. a period of gloomy and bad-tempered silence stemming from annoyance and resentment.
"she was in a fit of the sulks"
synonyms: (bad) mood, fit of ill humor, fit of pique, pet, huff, (bad) temper; the sulks, the blues
Yes. Yes I did. In spite of the fantastic holiday season during which I enjoyed significantly less pain and more energy than years past, John was forced to endure a couple hours of my "gloomy and bad-tempered silence".

Yes. Yes he did, poor guy. Even though during which he took me out for a delicious lunch followed by a movie.

Ungrateful? Heck, yes. Honestly, Julia...

Here's what sparked it all:

We were discussing how to best plan 2015 in terms of using John's vacation time. There are a few things that we (or I) thought would be the best use of his vacation. One being something that we both would enjoy a great deal, and the other.....well, the other event would be problematic on many fronts: It would involve a long flight, would require standing and walking for long periods of times with the potential of said standing and walking occurring in late summer heat, there being a very real a chance on not being able to get tickets to the event, and would require a fairly large expense budget.

Doesn't that sound like FUN?

So when John and others very tactfully tried to point out several flaws in the above plan, any logical and sane person would have taken these very real problems into consideration and would have immediately agreed. Which means that of course I didn't. My Bratty Inner Child Julia reared her bratty little head, took over my emotions completely, and I stubbornly dug in my heels.

I could agree that this would be an expensive and tiring outing for anyone. But when the insinuation was made that it simply was beyond my abilities, THAT'S the point when my unreasonable behavior began. Even though some small part of my consciousness was pleading with BICJ to listen to reason, I simply wasn't able to get past the surge of anger and resentment and yes, denial that began to rise with this comment, "Do you REALLY think you could do that? I would be hard even for me!"

"Even for me!"...........

Whoa, Nellie. Them there were fightin' words, pardner. My dander was seriously in a dither. Although I was miraculously able to keep my mouth shut for the most part, here's the gist of the things that I really wanted to say:
No? You're telling me I can't? You're telling me that I'm not going to? You're saying that I'm just a big old sickie incapable of this thing? Oh, yeah? Oh, yeah?? Well you just WATCH me, big guy!
I'm so thankful that by some external incredible grace I didn't let those things actually be said, because even as I was thinking them I realized in my heart that my argument wasn't with John or any other person. I knew that John and my friends wouldn't ever say anything that would hurt me.

No, my argument wasn't with them. It was with me. Or, more accurately, I wanted to have a no-holds-barred, rip roaring, down and dirty screaming match with my disease. I wanted to holler:
You stink! You're a dumb stupid ridiculous disease and I want you to get the hell out of my body! I hate you! I hate everything that you've done to me! I hate everything that you have taken away from my life! I hate every stinkin' thing about you and your ilk!!
I sat in the restaurant staring at my soup wanting to cry; and thanks to my guardian angel or God or just some small remnant of common sense, managed to say only this:
You're probably right. But this is.....this would be a huge concession to my disease.  
And a few minutes later quietly but fiercely,
I hate this disease. I just hate it.
When I had time to get myself together, I told John that I was done being a poop and that I was sorry. He, bless his heart, rubbed my back and told me that if this were a trip that was really important to me, he'd see that it would happen. Is he amazing, or what?!

But, we're not going to go. He's right. It would be beyond my abilities. And even if I managed to get through the event, most likely it would induce a crash of epic proportions leaving me semi-conscious in a hotel room for several days before I'd be able to travel all the way across the United States home. Would it all be worth it? Would it be fair to John and any travel companions? Would it be a good use of our money when this kind of budget would otherwise be put to far better things?

No. Of course not.

So now, a day later, as I'm thinking about this experience, I still am amazed at my capacity to deny the realities of living with autoimmune disease.  I'm still surprised that after a whole decade of dealing with the effects I can completely and totally underestimate how life-changing it is.

I'm still surprised that it is so hard.


Annette said...

It sounds like a wise choice you made, but the battle you had to fight with yourself and being realistic sounds like a real struggle. I have been escaping that by the skin of my teeth, and with prednisone, lots of help and adrenaline. Sort of an order "Body don't fail me now"
On the last trip I took all seemed well until arrival - then sun, headache, stomach - everything caved in on me and I went to bed with anti-nausea, pain pills and immodium along with a lot of hope. It seemed like a miracle that it worked.

Marion said...

I understand exactly. I have given up SO much, adjusted to so many changes/losses. The sheer frustration levels are dire. I want to howl and screech, and kick the walls. But, knowing that won't alter a thing, I slap a smile on my face. Thank you for giving us a voice. This is not the life we had planned, but it's the one we've got.

Tricia said...

Yes, but your determination and grit are what make you the truly awesome person that you are and an inspiration to us.

Brigid said...

On the other hand - you're getting a lot of support and understanding from your family! Imagine the shoe was on the other foot, and you knew the downfalls, but they all insisted on Plan B!

Laura said...

It seriously sucks that you can't do what you want, and your disease *is* a big ol' meanie. I think an occasional sulk or objection is fairly normal....

Kate S said...

Oh Julia - Who knew acceptance was not a thing you achieve once, but was something that you continually have to work towards. I sure didn't know that til Sjogren's became part of my life.

I am just back from a trip over the holidays which went as well as these things can for me, and I had a good time at several places we went to. But under it all is the frustration at not being able to do more, to have to to do all the careful maintenance to make it work, and a sense of guilt that my partner has to do all the "heavy lifting" to make things work. I've always been very independent, and now I'm quite dependent. I get use to it, but I still don't like it.

Thanks for being so honest about your struggles. It helps me to remember that we're doing the best we can, and we don't have to be perfect.

ShEiLa said...

Oh Miss Julia....
I am really struggling.
I sat back an evaluated my current limitations and how far downhill I have gone in just two years. My girls were talking about a trip to Chicago and I broke into tears. I just don't think I can do it. I remember getting off the train the last time and walking up the stairs of the Millenium Station thinking I am totally spent. Not realizing the walk that lay ahead of me down Michigan Avenue. I did survive the trip and had fun but I was the damper on the activities. We didn't do Navy Pier because I wasn't up to the challenge. I really hate auto immune disease and what it's done to my ability to enjoy so many things. I'm right there with you friend!