Lessons From Getting Out Of Bed

I was going to take the four-footed one for a fun adventure today.  I was on track for making this happen, until I actually tried to get out of bed.  The struggle to get out of bed was a warning sign for how the rest of the day would go.  And a fun adventure was not in the plans any more.

Thankfully the four-footed one didn’t care if we stayed home or went out onto an adventure.  The four-footed one just cares that she gets attention, love, treats and cuddles.  Oh and her every whim given into as it comes to her attention.  If you really want to impress her, give into her whims before she even knows that it’s her whim!

So we spent the day quietly, doing less active things, but still having fun.  Between her and lessons from lupus, I have come to appreciate the essence of the things rather than the big ceremonies.  The four-footed one doesn’t care if it’s a special day, she makes the day special all on her own.  Lupus has, at times, a way of getting in the way of celebrations, plans and such.  So you learn to find other ways to celebrate, or have plans that are flexible enough.  For example, lupus may not mean not going out to a park, instead it means ensuring you have shade, water and places to rest.

It’s just a matter of how you look at it!

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Lessons Lupus Style

The four-footed one took Beloved on long adventure the other day.  He thought they’d walk a few blocks, and hour and a half later a somewhat bewildered Beloved and a happy, yet exhausted, four-footed one came home.  She strolled into the house, drank heartily from her water and found the ideal spot to rest.  Beloved stepped in, headed to fridge for a drink of something cool and a comfortable chair. That was until he looked at the clock.

Once he saw the clock, he changed direction, headed for a shower and a change of clothes before dashing off to work.  The four-footed one took care of his rest for him.  And I, well, I was still trying to clean up the dishes and such off the table.  It was, after all, a slow day.  Slow days used to drive me crazy, I mean I had things to do and lupus would slow me down, making me frustrated and angry.  It was as if lupus couldn’t respect that I had a life to live.

But on that day, I cleaned up and felt at peace with the slow pace, which I knew would last at least the day.  The slower pace meant stuff wouldn’t get done the way I’d want to, but it would also allow me to enjoy the four-footed one’s company and the more simple things.  It would also mean that I would be careful about what tasks I would accomplish and what ones would wait for either Beloved or another day.

You see lupus taught me that not everything has to be done right away.  The world won’t end because the laundry has to wait a day.  Your life won’t be over because you clean the house today, make a gourmet meal or complete a power deal.  It’s okay.  And lupus also taught me that you know what?  There will be time to get to those chores and what have you soon enough.

It’s A Numbers Game

I should let it be known, again, that I am deathly allergic to math. I start to sweat, my knees grow weak, my throat swells up and my brain flees the confines of my skull when I am exposed to the stuff. However over the years I have developed coping skills so I can be around the basic math. Once fractions come out I start to feel shaky and I know better than to push my luck.

Imagine my surprise when I signed up for an online course working with software, not developing it, and within the introduction, the facilitator cheerfully announced that we would be using our math skills. Beyond the basics even. Stuff like trains traveling on different tracks leaving at different times and having different speeds was the beginning point of the math.

As the introduction continued the facilitator happily announced the need for understanding calculus because of course that’s an every day use right there. By this point sweat started to form, cold chills left me shaking and if I had to stand up I knew my knees would give way. The question became one of survival, did I stay signed into the class and attempt to use my weak coping skills with math or did I do the smart thing and leave before I killed myself with too much exposure?

I stayed in the class thinking that surely I’d have a firm grasp of how and when to apply my coping skills. Except I don’t. Because you start talking in math terms and I start to feel my throat close up while my brain searches for the nearest exit. But I will stay in the class if for nothing else than that I should get a bit better coping with these horrible confrontations!

When Your Parents Told You So…

When I was younger, my parents used to tell me to write a letter to the person I was upset with.  They didn’t tell me to send it, and in fact they never did let me send it, but they would insist that I write the letter.  The idea was that once I put my feelings and thoughts to paper I would find some healing or at least a way to move on.  And the letter would be ripped up or tossed on the fire so that I would have the satisfaction of watching it get destroyed.

Now when I was first diagnosed with lupus it occurred to me at some level that I could or maybe should write a letter to lupus.  Not that lupus would care, however it would still provide an outlet for things.  I didn’t do it.  I felt instead that I would be better served by taking that bundle of emotion and tying it into other aspects of my life.  And that worked well when it came to sorting out eating healthier, exercise regimes and such.

To be honest throwing that energy into learning everything I could about the illness and getting lost in school too all helped me.  But now, now I have time to consider things from a different place.  A place that reminds me that I have lost many things, and it’s okay to be angry about that.  It’s okay to rage about that anger, it’s part of the grief process.  And it’s okay to grieve for who I used to be.  So I have taken that idea and decided to write-up an obituary of sorts for some of my dreams and hopes.  And at the same time I have taken that idea and also written a gratitude journal for all the things I’m grateful or appreciative of since lupus has come into my life.  So maybe my parents may have been on to something.  But I’m going to do it my way!

Keep Going

I sat there on the hard plastic chair letting harsh medical smells invade my thoughts.  I’d given up waiting to hear the soft little noises letting me know the doctor was on his way, or at least the nurse, into the room.  There is something about waiting in a doctor’s office that makes time move in some strange way.  Time stretches to an incredible length and it remains that way.  Until.

Until the doctor or nurse is saying something serious.  And then  time zips by.  But I was just waiting.  Waiting for the doctor to tell me and go over lab results.  Waiting for the doctor to look at the newest round of swelling and maybe do something about it.  Waiting for the doctor to tell me he found a way to tame lupus.

The longer I waited the more I wondered what was going on.  And knowing me, knowing how my mind works, I opted to pull out a book to distract myself while I waited.  At least with a book I stop watching the clock, of course there is that wee issue of someone coming in when I’m not really ready to stop reading.

Finally the door opened, at a good place to stop riding, and my doctor came in.  Normally he has energy and a smile, but today that smile was forced and tired.  He made his way through my labs, looked at the swelling and told me that he didn’t know how anyone with a chronic illness keeps going.  Not after repeatedly bad labs.  The answer is that it’s tiring, but you keep going because there is always hope.  Always something just around the corner that may be the answer.

Goodness Me

His voice drifted lightly to where I was sitting. Melodic poetry swirled around me from the kitchen, where he was singing as he cooked.  Van Morrison, I suspected.  It was, after all, one of those days.  A day full of cooking and music while I sat uselessly in a chair trying to forget about harsh and ugly words.  Those which had flown so easily from my lips to lash at him.

And now he was in the kitchen, singing what I was certain was Van Morrison’s songs while he prepared what sounded like enough food to last at least a month.  Van, after all, was skilled at putting poetry to music and Beloved was nothing if not a lover of poetry and music. He also happens to not be a bad signer, having spent time with choirs in a previous life.  Me, I can’t carry a tune in a bucket and I have been offered money to not sing.

The four-footed one happens to be a lover of music, well at least fond of music.  She is a lover of food and will endure even my version of singing if it means a scrap of food might come her way.  She is also no fool, she could sense this mood that had drifted down upon me sometime while I slept and thus had given me a wide berth all day long.  She and Beloved are no fools, opting to provide me with my own space and ignoring my mood.

It is hard, these times, when I realize just how little I energy or strength to do anything.  It is hard to allow that lupus has found an upper hand again and now I must sit and rest, waiting until I had found the way through this latest downturn.  While Beloved had to manage the house, the dog, his needs and mine all on his own.  Not that he complains, not ever, which makes it even worse somehow. As though he is above this, saintly next to my dark sinned filled wretched soul.

The harsh, ugly words had been hurled his way after he told me to get some rest when he brought me a book to read, a knowing smile just about there on his lips. I had wanted to throw that book at him.  Truthfully I wanted him to have to sit in the chair, rest while the world went on all around him.  I’d not ask him to sit like that for long, just enough for him to see what it was like for me as fun went on where he was not.  (Not that my singing would entice even the most deaf of demons to come into where I was, but it  you get the idea.)

I knew, as the last lines of a song hung gently in the air, that soon he’d come to see if I wanted help heading up to bed. As if I were a small child who needed to be told to go to bed, or worse needed to be carried to bed .   Oh yes, this then is lupus at its worst. While not the disease, no the disease can be so much worse. Rather this is me at my worst, Beloved and the four-footed one being targets of my rage since I cannot throw a book or toss harsh words at lupus in any way that causes any damage.

 

 

The Wolf and The Resistence

In what seems like a world from another galaxy on some far-flung planet, I was once a healthy person who didn’t cringe about things like sunlight, alfalfa and bugs from sick people. I was once, relatively carefree and full of adventure. 

But like all good stories there must be some obstacle, some challenge or struggle which the main character must work through. In my case, not that I’m saying it’s a good story, that struggle is this thing called lupus. 

You may think of lupus, in this case, as being cast into the role of the evil villain.  Some of the best stories involve animals and in this case, you may think of lupus as a wolf, after all that is what it is Latin (if my memory is still somewhat correct on high school Latin).   Lupus stalks me as I make my way through my new life on this strange planet.  When I try to achieve my carefree life with adventure on this planet, Lupus creeps in finding my vulnerabilities and exploiting them to suit his needs. 

Currently there is no happily ever-after to this story, because there is no cure for lupus.  What there is instead a tolerance, a learning of patience and understanding what it is to not have everything so easily.  In some ways, while I fear the wolf, I smile when he is at a distance for I know I’m managing this balance required in my new life and I’m stretching and growing in other ways when it is possible, such as compassion and reflecting before I act.  Those are good things, things that on my former planet I might not have learned, but if I were to be asked if I’d prefer these lessons on my carefree, adventure-filled former life I know what my answer would be in a heartbeat.  Alas it isn’t an option to go back, so instead I work to make the best of life with lupus, and as long as the wolf is only spotted off in the distance to keep me in check I can manage. And when the wolf comes right into my house, well I work on managing in other ways, grateful for the help and support of others.

So does this mean I’m part of the resistance, the resistance fighting against the incurable illness?  You bet I am.