Sometimes Faking It Won’t Result In Making The End Result

I spend a good portion of my time and energy pretending to be something I’m not.  I try to be like a healthy person and I’m not.  News flash, no matter how many times I fake it I will never make myself into being healthy.

I know dear readers we have had this type of conversation before, and if you are fortunate enough to healthy you may not get this.  Today while having a conversation with a friend in a restaurant, our waitress decided to offer my friend, and inadvertently me, this lovely gem of advice that if you fake it till you make it anything is possible.  This includes dealing with chronic illness according to this waitress who clearly has a medical degree as well as working in the restaurant.

So if one fakes being well one will simply become well according to her theory.  Believe you me, if it were this simply there would thousands of people with chronic illnesses and serious conditions on this band wagon.

Lim not sure why people who know nothing about me or my condition think they have the right to offer me unsolicited advice on what to do to get back to normal.  It is a bit like this:  let’s say you invented a widget machine; it is your pride and joy, you live for this machine.  Now I come along knowing nothing about widgets or machines, but I tell you what you need to do to make it work better.  You’d laugh at me, throw me out of your building and have a great story to tell.

With chronic illnesses like lupus I’m on the one with the widget machine and some stranger comes over to me and says things like:  it’s all in how you view things, eat a healthy diet and avoid X, or have you tried Y it worked for my aunt when she had a cold. When I try to tell the stranger to get out of my shop the stranger gets offended and makes a comment about me not trying to get well or wanting pity.

So here’s the thing, just because I have lupus it doesn’t give people a free license to offer unsolicited advice.

Grounded

I’ve been reluctant to write this post, partially because I’m still outraged by the incident and by my own response.  You see my dear friends I do a great deal to hide my lupus.  I exert precious energy to appear “normal” to outsiders.  I struggle thought work, house chores, errands and all the normal stuff people do feeling like I have a dreadful bone aching flu and no energy at all.  I do this day after day.

I hide the red cheeks with make up, wear long sleeves so I can tuck purple/bluish fingers into them or pockets.  I never wear toe revealing shoes so you can’t see my purple/bluish  toes or swollen feet.  I wear long pants least you see my swollen ankle that now and then takes over my whole foot.

I wear confidence and bravado like a shield when really it’s a false front, bluster with nothing to bolster it.  So of course when you see through the facade it upsets me because let’s face it, there is a great deal of effort and energy that goes into this.  And there is always fear that someone, in some position of authority, will find me out and deny me something.

Which leads up to the incident that has me outraged, as well as my reaction.  You see friends, I was supposed to be on a flight recently.  No big deal thousands of people do this every day.  Heck I fit a great deal throughout the year.  I always pack light, arrive plenty early and try to get through security as soon as I arrive so I can settle at my gate until it’s time to board.  This seem so of work best for me.

I arrived early, checked in, cleared security and had ample time at my boarding gate to get some background reading done.  When they called for the flight, I went to the gate with no fear because I had made it through all the hurdles.  Now it was just a matter of getting on the plane, settled and landing at my destination with no problem.  And yet I never got on the flight.

The attendant at the gate denied me the pleasure of getting on the plane stating I was looking too ill to fly.  She had taken my passport from my swollen, red hands with their lovely discoloured nails…that deep purple shade that they tend to be and decided I was too sick.  The truth is if my make up wasn’t on she would have noticed my bright red face as well.  I’m sure the redness was evident on my neck.

It is, of course, the right of the air line to deny you access to a flight for reasons including appearing too ill or what have you.  I can write this calmly now, but at the time I was outraged, furious that someone who didn’t understand could decide that because I looked “less than normal” I could be denied something.  I explained lupus to her, but she still wouldn’t let me board.  And by now my hands were shaking with rage and humiliation and tears shone brightly in my eyes.

The agent at the gate kept telling me it was for my welfare as well as the good of the other guests and it was her job to keep us safe.  She said that she wouldn’t allow for recklessness in one passenger to ruin everyone’s flight and if I had common sense I could realize that flying was good for me.  She told me I was grounded.

And no amount of explaining, begging or threatening changed things other than let me know security could remove me.  So I went home, angry and hurt.  Phoned the part who was supposed to meet my flight and explained and then had a massive meltdown.

The airline is working with me to make things right, and I’m working with myself to manage this better going forward.  But the reality is, I felt much like a child grounded by some unreasonable adult and it wasn’t even my fault!

 

I Am Graduating…From Preschool

The problem with having an invisible, chronic illness is that when you aren’t really feeling able to pretend to be “normal” and let down your guard to share this news with someone, most people do not understand.  I can’t blame them, not really because a) you don’t look like there is anything wrong with you so you are probably whining and exaggerating or b) you’ve done such a great job as an actor that no one believes there could be anything wrong with you.

If you happen to live near the river, you know…denial as de River Nile (okay bad on my part) then you make it even worse by pushing beyond the point where you should rest.  I don’t know why  feel that if I just keep trying and pushing somehow I will beat this intense pain and exhaustion.  Yeah I know, if I get a pair of ruby slippers a hat that sorts people out, oh and a fairy godmother I might just be okay with this plan.  But I don’t have a fair godmother, I don’t actually have a god mother come to think of it.  I’m afraid the only hats I have aren’t remotely magical.  And for ruby slippers, well I have a pair of red tennis shoes and I have already been told that they do not count.

So of course I’m at the point now where  can’t hide om the pain or the exhaustion, but now I can only use the big medications.  The ones with extra dreadful side effects.  Those always pair so well with the pain and exhaustion.

But this time is different because this time I feel angry about this situation.  I really only have myself to blame and so if I want to be angry, it’s really only with myself.  But it doesn’t play out that way.  It comes out in sharp word directed at loved ones and friends.  It comes out in harsh tones, short attention span and a whole new level of impatience.  Ally of that, of course, just makes me more angry.  It’s a crazy cycle.  One where you basically become your own worst enemy no matter what you do.

Let’s face it readers, when it comes to my education with lupus, despite living with it for years, I’m only now ready to graduation from lupus preschool.  I’ve been told a whole life of living with this illness or any other chronic, yet invisible illness, will never get you a PhD in the illness.  If you are lucky you will have a high school diploma when you are done.

Since I’m still in preschool, basically right now I need a story, a snack and a nice nap!

My Problems

The problem with lupus is that it is a constant balancing act.  I must balance what I’m doing or want to do with how much energy I may or may not have on hand.  My problem is I suck at balancing I can’t even balance on two feet on flat ground all the time.

Sometimes I simply refuse to pay attention to the careful balancing that I should be doing while living with lupus.  Sometimes I throw all caution into the winds and decide to be “normal” .

The problem with trying to be “normal” is that it’s like chasing an impossible ideal.  What isn”normal”, how does it feel or act?  Does “normal” feel this tired or achy?  How come “normal” means rosy cheeks are healthy and when I have rosy cheeks it means I’m anything but healthy?

The problem  with being  me is that im stubborn and dedicated t my beliefs.  This means if I should rest I sometimes don’t do that.  I sometimes spend precious time with dear friends and pay the price later on.  And I wouldn’t have that any other way!

Invisible Superhero Outfits

The problem with a mostly invisible illness such as lupus is that you either end up living  a lie to try to be normal or you feel like you are being pulled into a strong undertow.

For me, it seems its best to appear normal to the rest of the wo world.  I don’t know when I made this decision, I only know that I’ve spent a good portion Of my life ignoring fevers, pains, swelling just to appear the same as healthy people.  I’ve  stayed away from hospitals just to appear normal.  I’ve stayed away as if to prove to myself I’m okay.

when you know you will be taking drugs like chemo, anti-rejections and steroids for your life it’s overwhelming.  So I’ve streamlined meds, opting for quality rather than quantity of life. An easy decision for me, not so much for those who love me and care about me.

THe  problem with having an invisible illness and trying to appear healthy and normal is that it’s almost a full-time job.  Make up to hide a rash if lupus is being truly dreadful.  Artfully arranged hair or hats and scarves to hide thinning hair.  Clothes to hide the needle marks and what have you.  Just add a huge dash of stubbornness and a heaping of pushing beyond wha gone should and you are good to go.

I know this because I’ve lived this way for a long time.  It’s exhausting and yet I do it because it’s important to be seen as a person, not an illness.  That’s my flawEd logic.  Usually it works enough that most people don’t equate lupus with me because I don’t want to be my illness.

Lupus makes me feel weak, helpless, useless, hopeless and lost.  So into what I ca to pretend and fool lupus into not knowing how it affects me.  Imagine my surprise when after a day where lupus was winning this battle Beloved held my hand at the hospital and told me that I was some kind of superhero.  In his eyes I wear a cape, tights and whatever else.  I do battle with the evil lupus and still find time for him and other  pursuits of life.  He told me just watching me can be tiring, and yet I d it and still find a way to do things he wants to.

I guess my cape and tights etc. are like my illness, invisible.  Hopefully I never forget that least I head out the house in my superhero outfit and no clothing! 😉