Acting Is Hard Work

Ask any actor what it’s like to be “on” for hours at a stretch and they will tell you it’s hard work.  Some days you just don’t want to be all sunshine and rainbows with smiles all around.  Those are the days that are really hard because you still have to be sunshine and rainbows and smile like it is the most natural thing to do for hours.

I know this because I too am an actor.  No you’ve never seen me on he big screen, I’ve never even slide across your television screen.  The last time I was on stage it was to deliver a speech about possibilities and opportunities not a soliloquy from Shakespeare. Never the less I, and countless others, am an actor.

I didn’t even audition for the part, it just fell into my lap, sort of.  Knee pain, lap, let’s not quibble over such a small thing.  You see when lupus decided to share my life, I decided to become an actor mostly so loved ones and friends wouldn’t worry about me.

My acting skills have advanced from faking a smile and saying I’m fine while I’m in a horrible flare to hiding limps, stiff joints and rashes.  I decided I needed those skills so coworker’s and bosses wouldn’t decide I was unable to be in the workplace.

I’ve acted as if I haven’t a care in the world as it felt like every bone in my body was crumbling.  I’ve walked up flights of stairs without people ever becoming wise to my swollen, aching knees.  And I have danced dear readers when all I really wanted to do was to curl up in a corner and make the pain stop.

Lupus also helped me develop my slapstick side, unintentionally. These days I’m more prone to slip into a bit of slapstick simply because there is no stopping a fall when it starts, nor can a girl defy the laws of gravity while she is on earth (at least not this girl).

I’ve  come to realize that all this acting is not doing what I had hoped.  It is in fact a disservice to others struggling with invisible illnesses such as lupus.  A friend who also has lupus used to marvel at how I carried on throughout a full day.  She called me strong and brave for working despite feeling like hell.  The truth is, that’s not strong, that’s fear.  What this acting does it makes it harder for healthy people to understand what lupus is really like.

So im retiring from acting, but I can’t promise that I won’t slip into it now and then.  But I’m tired of acting one way when things really are another way so I’m taking a final bow of sorts, wiping off the makeup wnd allowing myself and lupus to be what we will.

Wasn’t Ready, Not Really

Call me Disaster-on-two-legs.  Pleased to meet you!  Hope you don’t mind if I just take a seat here, hopefully near nothing breakable or such! 😉

Okay so I’m not really called Disaster-on-two-legs, but if the shoe fits!  And having a chronic illness such as lupus definitely helps the shoe fit a bit more.  Now to be honest I’m not always liable you break your fragile wares.  And I don’t always spill stuff, certainly not the staining kind.  It just seems that lately I’m doing more and more of the disaster type stuff.

Most distressingly for me is at these things are no longer confined to the privacy of my house or the house of ones.  Oh no dear readers, I’m capable of spilling staining liquids on the general public as well.  I know this because just today I spilled a full cup of delicious iced tea all over three perfect strangers.  I also managed to drop a plate on some poor man’s shoe. This was all before ten this morning.

Who knows how many disasters I could have helped create before nightfall if I hadn’t gone home and basically stayed way from everything.  Now deep down I know that I’m not really a disaster or such, but some days when my lupus is flaring too much I can’t help but feel that little niggle.  The niggle that reminds me that I have to do things differently sometimes because I’m not the same person I was before.  It’s okay, these changes, after all most people must deal with the changes of aging.  My changes just happen to be a bit different and watch out general public!

How Do You Eat On A Patio…With Lupus

I used to love patio eating (no not eating a patio, but eating on one!) at quaint little cafes because you can enjoy good food with great company and not have to worry about doing the cooking, the dishes or deal g with bugs.  I am dying to know the secret that these places have which makes it seem bug free because when I eat outside at home it’s pretty much bug central!

Notice how I said I used to enjoy patio eating?  The thing is, I’m no longer fond of it because the last few times resulted in a little too much sun.  And too much sun mixes a little too well with lupus with the end result being a phenomenal lupus flare.  Perhaps if I were into admiring lupus flares I’d be amazed at how strong and long-lasting they can become.  As a lupus warrior, I’m not as impressed by them and try to avoid them by staying in the shade.

And here lies the rub with eating on patios, they tend to be situated for maximum sun.  For most people this is a wonderful thing which leaves them clamouring for more eating on the patio.  And when I’m out with some people they don’t realize that the last place that’s ideal for me is the patio so my voice is silenced or ignored.  I’m left with two choices, grin and bear it while hoping for the best outcome which is minimal sun exposure, or make some excuse to leave and not deal with sun.  Neither of these are ideal.  After all e years I’ve battled with lupus you would think I had a better handle on this, but alas I do not.  And until I do I think I will continue to cringe when I see eateries with patios.

I’m Dreaming Of Food…Or Channeling My Inner Chipmunk

Today I’ve been dreaming about food.  Well dreaming is probably the wrong word, lusting is probably more accurate.  I have been lusting after food today.  No don’t misunderstand dear friends, I love good food and I love sharing it with people I enjoy so it’s not unusual for me to think about food.  I’ve been known to plan whole menus as a means of pleasantly passing time and I’ve no shame in this either.

However today I’ve been running on the see food, think food, desire food sort of cycle.  I blame my medications partially for this shift in my food relationship.  I also blame people sharing delicious ideas and placed with me all in a very short period of time.  This sharing lead me to feel like I need to try it all, right now.  Not that I’m complaining about people sharing these things with me; whether we break bread together or separately but shared experiences I think is a wonderful thing indeed.

The thing is, though, between my medication, my lupus flare and the insane hamster on the wheel that is my brain, I fee exhausted just trying to figure out what to do and try and when.  And of course this makes my health teeter totter a bit more.  Again I am not complaining for I am blessed, truly blessed to have wonderful people to share food with and more importantly to not having to worry about where the next meal comes from.  I just need to tame the lusting of said food into something more manageable so food isn’t falling off my plate!

Lupus Doesn’t Mean Laughter Leaves

I recall a childhood filled with many things, but what stands out the most is laughter.  My father was the type of man who told “dad jokes” before they were a thing.  When I was young these jokes were funny, as I got older they became groaner that still managed to get a chuckle.  My mother could not, for the life of her, tell a joke correctly and you’d end up with the punchline part way through the opening of the joke, which made for great hilarity nonetheless.

My own sense of humor may run a bit dark or towards the sarcastic flavor, but I still seem to find reasons to laugh.  Sometimes I’m laughing at myself, the hopeless predicaments I end up with when lupus is really flaring.  Sometimes I’m laughing at something the four-footed wonder has done.

The fact is, I laugh a few times a day.  Every day.  I cannot imagine life without laughter. And evidently my doctor agrees with me.  Laughter, according to his reports, goes a long in managing the stress and other impacts of chronic illness.  Unfortunately he cannot, nor can any other Doctor, actually prescribe laughter.

It is up to the patients, the warriors, the ones the frontline to find things to laugh about or at.  Today’s laughs were courtesy of lupus combined with my four-footed companion.  You see sometimes lupus makes me exceedingly clumsy.  Add a small, agile and highly impatient dog into the mix and great hilarity ensues.

Lupus, dear friends, does not mean the end of laughter.  All you have to do look beyond the condition and face life ready to laugh.  Trust me, I know from experience.

To The Tips Of My Toe

Toes.  Those little digits on the ends of your feet.  Small little things that have a habit of getting in the way or striking objects. Toes are marvellous things when they are wiggling in the warm sand of a beach.  Toes are wonderful for squishing in mud or letting thick carpet fluff up between them.

Of course we use our toes for walking and balance, but that’s only when you look at them from a practical vantage point.  For some people another practical aspect of toes just happens to be this neat ability to pick items with them.  Kind of like our cousins the monkeys.  And yes some folks can use their toes for climbing trees or rocks.

I don’t normally consider my toes, unless I’ve smacked them into a table leg or put a chair leg on top of one of my toes.  But these days I’m thinking a bit more about my toes because of the four-footed one.  You see she has taken to going for longer walks, specifically in the hillside areas.  My toes are paying the price for her love of adventures during the day.  The price is increased pain, probably from all the times I cracked or broke them in the past.  My toes are not made for hill walking it seems.

At first I thought my toes hurt because of my shoes.  I thought my feet were sliding around and banging into the ends of my shoes, but that doesn’t appear to be the case.  As best the professionals can tell I’m just continuing to make smaller jig saw puzzle pieces with my bones, specifically my toe bones.

Tanks, Paws And Me

The four-footed one is a bit like a tank in that no terrain is safe from her paws.  Grass?  She uses it as a pillow.  Dirt?  Bring in on.  Mud?  She is an expert in the stuff.  Rocks?  If there small she will walk in them, larger ones are meant for climbing on.  Sand?  She exfoliates her paws with the stuff.  She loves the feel of damp moss and isn’t fussed by the texture of twigs.  She washes her toes in puddles and glides on the snow and ice.

Her owner on the other hand is not a tank.  Her owner does not always enjoy the terrain we encounter on our walks.  Snow and ice aren’t so much a glide as a slide or slip!  I’d prefer not to have my toes squishing in the mud or damp moss.  Damp sand is acceptable if we are walking along the beach.  Rocks and twigs aren’t my thing; I don’t mind grass, just not with bare feet.

So why am I telling you this?  Because dear friends today’s walk started with cement which gave way to dirt and grass.  The dirt and grass gave way to rocks and sticks on hard packed dirt.  And all of that stuff led me to realize that my companion, the one I thought was a dog, is in fact a tank of sorts.  While I was struggling with the terrain she was having a ball.  While my feet were less than thrilled her paws were in paw heaven.  Somehow this doesn’t seem fair.  And I wonder how I got to where I am.  So it a case of too many hours in shoes or is this why early humans perhaps were more nomadic, to get away from things which were unpleasant underfoot?  Did I mention I’m in awe of this sweet dog of mine?  That is when my feet aren’t suffering from the path she chooses for us!