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.

Too Hard,Too Iffy, Never Too Easy

Some days are easy like a nice summer breezy.  Some days are hard like the rough ground in a dried-out, abandoned yard.  And some days are in between.  The trick is to ride the breezy day as long as you to help sail across some of that hard ground as you move towards another gentle breeze.

If you have a chronic illness you may have just read that last paragraphs and rolled your eyes (I heard eyes roll!) and thought “easy to say” or “excuse me, there hasn’t been a breeze this way in a long time”.  I get it, I really do.  Hey, I have a chronic illness too and have to cope with this as well.  And I do understand that sometimes no matter what you do, or don’t do in the case of resting, there is just a lot of hard ground in front of you.

On the in between days I’ve started to most a little more attention to my diet, exercise and rest.  Okay so it’s a bit more than just paying attention; I’ve been keeping track of all the details in hope that I will find a key that keeps me in the path to the easy days.  So far the data I have looks like a pile of tangled spaghetti.

Not being educated with a medical degree, I have also shared al this data with my specialists.  Soemtimes what appears to be a tangled mess of spaghetti makes perfect sense if you just know what you really happen to be looking at.  To date it appears none of my specialists can read the spaghetti.

I suppose I could just drop is and ride the currents of the river known as lupus, but I have this weird thing about being in control or at least being able to read the direction I’m headed down. So I will continue to gather data, continue to work on moving away from the hard and over to the easy.  If any of you already have some tips or tricks for making this work, please let me know!

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!

The Lupus Playground

Besides playing on swings, when I wash kid I loved going on slides (I loved climbing up the slide after going down as fast as I could) and going on the merry-go-round.  I could spend hours on these fun pieces of equipment, which I guess is a good thing considering as I got older I developed lupus.

I know that might seem odd to some people, I mean what does fun on the playground have to do with a serious, chronic illness.  However if you let me explain, you might see the link that I see.

Having lupus is a bit like riding on the swings, going as high as you can and then having it all slow down to nothing.  The times when you are swinging high it’s great, as things slow down you are losing some of your health to lupus.

Going fast down the slide may be thrilling, but it’s a decline.  So you have to build yourself up, get your health back by climbing up either the stairs or the slide itself.  And then once you are at the top, you enjoy the view, maybe take in the breeze and then bang, you sit on the hot metal and ride the slide down.  If it’s a good slide the decline happens fast and you don’t realize it at the time.  If the slide isn’t great, it’s a slow grabbing ride down and you are fully aware of everything that’s happening in slow motion.  (And if you were wearing shorts you burnt your legs as you got stuck to the metal.).

Ah yes the Merry-go-round; a simple thing really.  You just go around and around as fast as it goes.  But sometimes it goes too fast to let you off so you just hang on and wait for the ride to end. That, my dear readers, is a bit like the waiting and testing for lupus and lupus flares.  So maybe it’s a good thing I enjoyed the playground as a kid, it was z for my life with lupus.

A Case For Chronic Illness or Travelling Lupus

In television land you can sit on your suitcase and get someone else to zip the thing up without any issue. In my world, if I were to sit on my suitcase to have someone help me zip it up, I’d just break the suitcase and everything would become some type of projectile. I keep this in mind when I pack because I don’t always have someone around who can assist with the whole sit-and-zip deal. Of course I also keep this in mind because going through security in airports with a bag that’s just about to burst open at the seams is a sure sign that you will be pulled over for someone to examine your bag more closely.

Yes my friends I have been that crazed woman, the one who is forced to open her bag at security and have everything come flying out in all directions just so some strange person can go through my stuff. The best is how they give you a short period of time to get your stuff back in your bag. Seriously by this point you just don’t care anymore how it gets in as long as it gets in and zipped so you can rush off to wherever you need to be before missing a plane.

If you are a perfect packer you have no idea what any of this is like. You probably glance at us with pity and perhaps amazement at what we all pack. Or you judge us for needing so much stuff and not following the packing rules of life. I get it. I’ve been there perfect packers, oh I have been there.

Life with a chronic illness like lupus is a bit like that over packed, need-to-sit-on-it-to-zip-it suitcase. You have to over pack because you never know exactly what you will need and of course the one time you don’t pack it will be the one time it’s desperately needed. So you stuff your suitcase full of what you need, you sit on it and find someone who’s got decent hand strength and coordination and you have them zip the case. You pray there will be a cart nearby because carrying around that luggage is just too much. And you hope that you won’t have to open it all up and have everything come tumbling out in public. Because it’s bad enough to know you are struggling and don’t’ have it all together, but to have an audience? No thanks.

Life with a chronic illness means debating if the trip is worth that kind of battle. It also means trying to find a suitcase that will work and will hide the worst of damage. And it means hoping you can find compassion and understanding when you need it most, like what comes with the stress of travelling.

I’d tell you more, but the 1400 flight out to Lupus Flare Reduction is now boarding and I have a feeling someone is going to want to go through my case before I get on the plane, so take care and take cover!

A Story Of Sorts or Lupus As A Villian

Once upon a time, in a place probably not too far away, there lived a girl who was full of life and energy. She was a decent student, a good friend, a cheerleader and carefree. She was happy with her life, riding the adventure of university and all the endless possibilities that stretched out before her.

One day the girl woke up feeling rotten the way you do with the flu. She brushed the flu symptoms off to the side, pulled herself out of bed, got ready and went to her classes, still feeling horrible, but knowing it was only the flu. Only this flu seemed to want to stick around so after weeks of feeling run down, tired and achy, the girl went to see a doctor.

At first the doctor thought that the girl was feeling the effects of stress from a heavy academic course load combined with an active life. He told her it wasn’t anything to worry about, but if she still felt the same way the following week she needed to come back. He suggested that she scale back some of her commitments and rest that was probably all she really needed. Except she had already scaled back most of her commitments and was at a point of missing classes now and she still did not feel any better.

The following week the doctor ordered some blood work and thus began the girl’s adventure down a rabbit hole that didn’t have the Mad Hatter or the Queen of Hearts. In this rabbit hole the only villain was known as Lupus. And while lupus may not have demanded to cut off the girl’s head Lupus made other demands instead.

Demands that included dropping out of the faculty she loved dearly, giving up on a career in a field that captured her heart. Lupus forced her to stop cheerleading and forced her to slow down everything that she did. Despite paying these high prices, Lupus would not let the girl go. Instead Lupus tortured her by attacking her kidneys and liver, threatening her heart a few times and forcing her to stay in hospitals more than she’d have liked.

Despite Lupus, the girl graduated with a degree and got on with her life, granted not the one she had thought she would have, but still full of love, friendship and purpose. To this day Lupus still is a villain in her life; Lupus still makes demands and dictates aspects of her life. How do I know? Because that girl is me and there are days I still feel as if I’m falling into the rabbit hole, but if I can grab ahold of something, anything, I can prevent myself from landing in it.