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.

Chipmunks And Me

When I was younger, I used to feed animals bits of crackers and such. If you were a duck or a goose, chances are I would throw the cracker your way.  If you were a squirrel or a chipmunk I would place the bit of cracker somewhere near me for you to come and nibble on.  I might also have nuts or seed grass pieces to hold out to you if you were cute and fuzzy.

My all time favorite to feed was chipmunks, you see I loved how they would pack all the offered food into their cheeks which would get chubbier and chubbier.  I guess back then I adored chubby cheeks, and to a degree I still do, just not on me.  And unfortunately as part of my lupus treatment I take a steroid called prednisone which just happens to give me chubby cheeks.  Well actually what it does besides giving me chubby cheeks is an incredible appetite, which results in the desire to eat all the time.  Eating all the time can lead to more than chubby cheeks.  And chubby cheeks on me are not cute, not like they are on chipmunks.  Thankfully I do not stay on prednisone all the time!

Sharin’ ‘Em

A while ago I stayed at a bed and breakfast which had the most amazing food and quilts. Not together mind you, but the food was some of the most delicious and simple food I’ve ever had and as for the quilt, well it was perfect in weight and comfort.

It was the kind of place that you want to share with someone, or maybe it was the experience that I wanted to share most of all with a certain someone.  At any rate it was a lovely visit that i know a certain person in my life would have enjoyed with me.

You see this person is an amazing friend, one I’ve unfortunately taken for granted at times, ignored at times and such.  She is one of the most incredible people I know.  When I told her about my diagnosis of lupus she went out and did her own research, not just to understand the illness, but also how to be involved in and incredibly supportive way.

The delicious food was something that I know she would have enjoyed and we would have had a wonderful time sharing and tasting things.  As for the quilt, well this lady makes the most amazing hand stitched quilts.  Anyone who receives any of her handy work (she does al types of amazing, creative things made with love) is truly lucky for they are made with love and that love simply wraps around you.

Without ever saying it, her support, her love and her positivity has always been open to me.  Sadly I’ve been too stubborn at times to receive or be open to her positiveness.  As I lack creative skills,I am unable to develop a quilt for her to let her know how important she has been in my journey in life with lupus.

Breakfast In Bed Anyone

I am not a fan of breakfast in bed.  To be honest I’m not a fan of any meal in bed, this may be a result of too many hospital stays.  And then again, it may be a case of feeling that where I eat should not be the same place where I sleep.

This doesn’t mean that I don’t eat in bed, obviously that’s the case when I’m staying over at the hospital.  And yes it is true, Beloved has served me breakfast in bed a few times as well as other meals.  I just don’t enjoy it as much as some people seem to like eating in bed.

it isn’t just because of the crumbs and such getting in your sheets.  You see friends, I don’t spend a lot of time in bed when I feel well.  When I’m in a horrible lupus flare however I may spend days in bed.  Those days pass by in a blur of sleep, pain and medications.

Perhaps it is because I’m a product of my upbringing where unless I was very ill my parents expected me to be up and about doing things.  Heck my mother subscribed to the theory of get up and get dressed because you will feel better.  Sometimes it works, sometimes I don’t even have the energy to get out of bed.  At best I pull a brush through my hair.

So why am I telling you all this?  Because recently someone told me they thought the most decadent thing in the world was eating breakfast in bed.  Now I’m sure she didn’t mean the jello cups that I get in the hospital, but I just can’t see how eating in bed is decadent.  How about you?  Has lupus ruined a good thing for me?

Bloody Vampires…or Lupus And Needlework

I’m always torn this time of year; I love all the colours and smells as nature uncurls her beauty, but I dread certain things.  Mostly what I dread are the stinging flying insects as well as the bloodsuckers that seem impossible to avoid.  And this time of year I must deal  those suddenly alive and very hungry mosquito  mommies as well as what seems like a lab sheet of required blood work that’s several miles long.

I can at least protect myself from the insects that seek my blood, unfortunately for health reasons I cannot avoid the lovely folks who let my blood for various lab tests.  It’s part of the deal I made when I started treatment  for my lupus.

Well to be completely fair and honest, had I know how much blood I’d be donating for lab tests and such I may have hesitated a little more about my treatment.  I’m not a fan of needless and yet lupus have meant more needles than I had ever thought possible.

I have needles for blood draws, needles for treatment, needles for tests and on and on he list goes.  I call myself a human pincushion at times.  And yes I do call my Phlebotomists vampires.  Hey you have to find fun where you can at times because laughter helps.

Now I just wish the mosquitoes would get the message that I’ve already donated my annual supply of blood.

How Lupus Colors My Life

My favorite color is not blue.  I also have never called red nor purple my favorite colors.  It’s not that I hate them, they just don’t happen to be my favorite colors.  You’d never know it though by the way my body behaves.

Typically my fingers/hands and feet will be blue or purple when I’m mildly cold.  My hands and feet, during these times, are not mildly cold, they are freezing cold.  As a matter of fact if I place my hand in a freezer for a few seconds on a hot summer day, my hand will remain freezer cold and purple or blue for hours.

My hands and feet will turn brilliant red if I get too warm.  (This isn’t all that common for the record.). When my hands and feet are brilliant red they are also swollen and itchy.

Both the turning blue or purple and the redness are courtesy of a condition known as Raynaud’s.  In my case Raynaud’s was a secondary bit of fun that came along with lupus.

Lupus also adds color to my life, well body through purples and reds.  My charming butterfly rash, when present, gives me red cheeks.  Lupus, when attacking my joints, will turn them a puffy red mess.  As for the purple, well I seem to bruise easily with lupus.

So you see it’s rather interesting that my body thinks that red, purple and blue are my favorite colors.  Granted if my body were to display my favorite color I’m pretty sure I’d end up quarantined!

If Marathons, Lupus and Acting

A friend has recently decided to run marathons.  He has never run one before in his life and isn’t really much of a distance runner at all.  So I was curious as to why he thing he could run a marathon.  He gold me it was all in the training.  Besides getting better at running distances, he was training his mind to see the marathon not as one huge distance, instead he was going to celebrate each of the smaller successes.  Such as running so many blocks or such.

He believes it is a case of mind over matter and pointed to me as an example of such training.  His logic goes something like this, I have a chronic illness that has made me have to run a marathon of sorts.  The difference is this illness didn’t give me a training plan or time to train.  Instead I was just dropped into the thing and have no idea when it even ends.

To my friend’s way of thinking for someone who has not be provided any training I’m doing an incredible job at staying in the race.  To his point, he says that other people would give up, simply drop or demand a cart to let gem finish their journey.  Whereas I just keep plodding along with one foot in front of the other.  No matter how tired I am or how much pain I feel I somehow drag myself through the marathon until I feel better and don’t have to drag myself so much as stumble.

Its flattering in some ways to know my acting skills have gotten better with time.  I mean if my friend doesn’t see how hard it is to just put one foot in front of the other than I’ve done a good job at fooling him.  If my friend also doesn’t see the sheer terror I feel at stopping and instead just sees me as determined then so be it.  The reality versus the smile I present to others is my way of hiding and protecting them from what my marathon is really like.

Stopping would be easier, but at the same time what happens once you stop?  Does a stop mean stopping for good and giving up?  If it does, what do you do? This is why I plod on, trying to hide how horrible the struggling is at times.  And if someone takes inspiration from it, fine.  But people shouldn’t expect or compare themselves to each other.  We all run our own marathon in our own way and sometimes it’s all I can do to lace up my shoes and find the path.