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!

When Too Much Used To Be Fine

The four-footed companion doesn’t understand the concept of “too much”.  As in too much heat because it was beyond war mush today.  Which leads me to the next too much which was too much sun.  Too much sun isn’t good for me, is great for making lupus worse, but my medications have rendered me so sensitive to the sun that when I have too much I swell up and go an odd pinkish purple.  Call me the human puffer fish during those moments.

Now to be fair, the four-footed one found plenty of shade, that which was cast from parked cars and such.  It would be fine with me if the shade provided by parked cars covered more than my feet and ankles.  With the majority of me exposed to the sun I tend to rely on sunscreen and clothing with sun protection.  It also means that I tend to be covered from wrists to ankles.

So today was a day of too much because the weather forecast indicated cloudy and so I packed different clothes for this trip.  And thus it took only a short period of time to reach my too much threshold.

I wasn’t always like this, I used to enjoy the sun and the heat and never grasped the concept of too much sun or heat.  Sure I still wore sunblock but I als didn’t find myself relating to Dracula as much as I do these days.  There simply was no such thing as too much sun or too much heat, rather they were just glorious days. I miss those days..

Masking Disguise

As part of my studies when I was in school, I looked at older cultural relationships with the unknown and spiritual world.  One common theme among all the cultures I studied (which ran the gamut from early North America and Europe to the San people), was the use of masks.  Some cultures made masks of clay, others of wood and still others used forms of paint to build masks upon the person’s face.

Typically these masks represented a being or type of goddess/God, but sometimes the masks were designed as tools to work with the known or unseen.  If the mask was used as a tool it might be designed to scare away evil beings, or perhaps help tie souls together again.  Always, regardless of the function, the masks hide the person’s face and to some degree his/her personality as well.

Over the course of my studies and continued research I have collected numerous images or copies of these masks and many have adorned my walls at various times.  Even if you don’t believe in the power some ascribe to the masks, there is something magical about them and the way they look.  I used to rotate out my “weather” masks.  When I wished for cooler rain I’d bring out the appropriate masks, not because I necessarily thought they would make it rain, but rather because they suited my mood. (In all my research  I’ve personally never seen a mask bring about a shift in weather or fortune; typically there is a ceremony or dance associated with the mask’s intention.).

As some of you know this has been a rather trying month for me with lots of changes and upheaval taking place.  These aren’t the every day upheavals either and there have been a few of them that have left me wondering if I had reached the bottom of a pit.  (I rather suspect the bottom of any out is what we make it to be and of course there is a real possibility that if one isn’t careful the pit is in fact bottomless.)

Most people though wouldn’t know about the upheavals or changes just by looking at me because I too wear a mask.  My mask gives me strength and confidence when both are flagging. My mask makes me look less vulnerable to outsiders.  My mask is meant to scare away lupus while insisting that people do not pity me.  So far the scaring off of lupus has been an utter failure; the look has worked at keeping people’s concern and such st bay.

The thing with wearing my “scare lupus” or “make lupus fear me” mask is that it comes with a price tag.  A price tag that I have often failed to check before donning my mask.  You see in my research I learned that in order to tap into whatever power it is that the mask wearer seeks, s/he must give something up in return.  In my case it’s energy and positive feelings.  All too often I’ve reached for my mask and not stopped to consider the price of wearing it.

In some cultures when the mask wearer does not hesitate to continually give up a small piece of him/herself that person is deemed to be corrupt by the community.  You see when you continue to give up or give away something in return for a power it means that the power has corrupted you or at least blurred your vision and judgment.  Somewhere along the lines I took up my battle with lupus while wearing a mask that promised to keep the illness at bay.  I started wearing the mask in the belief that if I looked strong enough a lupus flare could be avoided.  For the record taking care of one’s self and working with one’s medical team is what helps avoid flares.

It almost came to the point where I don’t know what I looked like before the mask because it had become such a habit.  But the mask hasn’t helped avoid the flares and I’m tired of being tired and looking strong when I feel anything but that.  I’m tired of paying an unnecessary price and so I’ve been working at not putting on my mask all the time, waiting until the mood hits me to wear it.  And I’ve discovered that by letting go of or at least loosening my tight grip on needing to be so tough has given me renewed energy and opened up my eyes to other opportunities.

I still have my mask for when I want it to feel strong or secure, but I don’t need it to be strong.  I am strong.  I am a lupus warrior, and these days I even smile!

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!

How Dogs Help Me With Lupus

When I first got diagnosed with lupus, one of the doctors strongly suggested I get a dog if I didn’t already have one.  At the time I did not have a dog and I didn’t think it was such a great idea.  Not after being told I had a serious illness that could kill me if I didn’t get help to manage it properly.

When I saw the same  Doctor a few months later, he asked me if I had a gotten the dog yet.  He explained that dogs are wonderful for helping to relax people, reduce stress and make sure that people stay in a routine of getting out and such.  What he couldn’t possibly know is that I tend to like my dogs a little on the unusual side.  Rarely are these dogs relaxed and sedate.  By the same token, these dogs insist on attention and quality time.

What this doctor and several others failed to recognize is that there is something healing about the unconditional love you get from a four-footed friend. If you have an off day, feel like rubbish or what have you, well they still love you and accommodate as best they can.  If that means that you can only curl up and rest, you get a short demand for a walk and then they get in resting right near you.  Sometimes that’s the best kind of medicine you can get because it does so much for your soul that it helps heal you a little.