Unravelling

The problem with lies is that hey eventually collapse under their own weigh.  Or they unravel in the most spectacular way.  It’s easier, in life, if you just tell the truth; honesty is the best policy.   And I know this, yet I lie.

I have had lies collapse under their own weight in the most horrific ways.  And I’ve had them unravel like a poorly sewn hem on a skirt.  Again in the most spectacular ways.

One would think after having dreadful experiences one would avoid doing the very thing that created the experience in the first place.  Or so one would think.  Apparently that one isn’t me.

While at a doctor’s appointment, one in which I was reassuring my doctor I felt perfectly fine (let’s face it with lupus perfectly fine is in degrees) my eyesight in one eye went all wavy and my eye started watering uncontrollably.  Apparently other than my lupus flush I went entirely pale. And I ceased to make sense while speaking.  But everything is fine right?

Needless to say my doctor didn’t listen to the whole perfectly fine bit I lied about.  And now I have more tests for what is going on. The sad fact is the eye watering thing has been on and off for a bit, I chose not to share that with anyone.  I haven’t had the speech issue before .  I may have had the wavy eyesight issues temporarily before (yeah I know open and honest).

Once we’ve unraveled my health issues and if they are lupus related, I hope to unravel why I continue to deny how I’m really managing with my disease.  I know part of my issue is not wanting to burden anyone with my health issues.  I also know to a degree I don’t want to deal with my health all the time.  But why on earth do I do this with my medical team?  Yeah I have to unravel this.

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Going Through Hell or Insurance Companies

Sir Winston Churchill supposedly said “when you are going through Hell, keep on going”.  I guess he decided Hell was not a place to stop, rest, do some sightseeing and basically get trapped.  Pity I heard about all of this after I made my foray into Hell.  Or as I like to call it Insurance companies claim departments.

Seriously, if you have a chronic illness like lupus, and take medications such as I do, you inevitably end up in Hell.  It’s starts off with a simply phone call, afterall surely they have misunderstood something or made a mistake while processing your claim.

When they put you on hold the first time, you descend a little further into Hell.  No amount of breadcrumbs dropped as a trail will help you.  This is Hell after all. And the fun is just beginning!

After the first hold there is the questioning about if you really need the medication and such.  And then the transfers and demand for further paperwork.  And down you go, further into the one way path in Hell.

If you are lucky some of the required paperwork will have to come from a doctor or specialist.  These are the people who can rescue you from Hell.  But it may cost money and of course the deeper the level is that you happen to be on, the more it will cost or the longer it will take you to get out.

Perhaps instead of going through Hell you could get a pass, after all you are dealing with a serious chronic illness.  Surely that is more than enough.

I Wonder…

I wonder what it’s like to be full of energy.  I would jump out of bed, easily accomplish everything I wanted to do, go to work and keep up with all the adventures the four-footed one wants to take.  I’d marvel at how much one can do in a day.

Of I haven’t jumped out of bed in years.  And I have no clue what I’d do if I got done everything I wanted to within the day.  What on earth must it be like to not have a list of some sort just waiting for you to get to?

I used to be that girl, the one who had a far amount of energy.  I used to be that girl, the one who could easily tick things off her to-do list, or be up for a visit with friends.  (Granted there was still a limit to how much energy I had.)

But that was before.  Before lupus demanded attention.  Attention and energy.  Lupus is selfish that way.  You may have a mile long to-do list but lupus doesn’t care.  When lupus wants you to stay in bed, lupus makes getting out of bed super hard to do.

I used to think my dishwasher, the machine rather than a person, was a nice-to-have item.  Since lupus I’ve come to the conclusion that it is a must have.  I only ha e so much energy and strength and I rather not spend it on dishes when I could be spending it with people I enjoy.

I wonder what it’s like to love someone so much and watch the, struggle with a chronic illness like lupus.  To watch them struggle to get only some of the household chores accomplished.  To have to pick up the slack for that person.  I wonder how Beloved does it, and does it so easily and gracefully.  I wonder how he doesn’t get upset, surely he just resent lupus at times.  And yet he just keeps going, like he Energizer Bunny.  And I, while when I can I struggle along or let him carry me along.

One Of Those Some Days

It’s been one of those days.  It started off okay, but quickly became one that was full of too much.  Or maybe it isn’t so much that it was too much as it was a case of me not having enough energy for everything.  Not that it really matters in the end because the results are the same.

The results  can be explained as follows:  pain, frustration, exhaustion and a degree of anger.  And that’s just within myself.  If anyone has to deal with me during one of these days, well I pretty sure their list has my results plus others!

So how does a person with lupus end up with one of these days?  Sometimes this person may overestimate what s/he is capable of doing for that period of time.  Sometimes what s/he thought would go a certain way ends up going a different way.  And sometimes, well sometimes lupus just steps in and has a say in things.

So the person, this person, cannot always change that.  But this person can try and make the best of things where possible. One these days, this person tends to retreat to be on her own and uses the time to read and rest.  Or at least not have to infect other people with the miserable mood that settles upon her.

And some days, sometimes, despite it all, this person ends up with tears down her cheeks.  But tears can be an emotional release which helps too.

Evacuating Lupus

Today was leg day.  More specifically it was stair day.  Twenty-four flights of stairs, each flight consisting of twenty-five steps.  This cardio work out was followed by a cool down of consisting of a “short walk” of roughly 1000 steps.  And then a rest period out in the sun.  And then after I rested, we did the whole thing in reverse.

Not because I wanted to as per say.  And no I do not have a trainer who forced me to do this.   No dear friends this whole workout was brought to me courtesy of someone pulling a fire alarm in a building I was visiting. A specialist’s office in a high-rise.  As a matter of fact this happened twice during my visit.

While I understand and appreciate the cause for concern and safety, I really wasn’t up for all that.  Not after the day I had been having nor the reason I was visiting the specialist for.  I confess there was a small part of me that had briefly wondered if it wouldn’t be better to let myself become overcome by smoke and just stay where I was.

After my appointment I went home and rested. To be honest I all am because all of that was too much.  In fact it was so much too much I still haven’t ceased to feel shaky and weak.  Sometimes this is what life with lupus looks like.  Sometimes a chronic illness isn’t really taken into account with safety or evacuation plans.  And while yes at least I was safe, the reality is I am going to be dealing its fallout for days to come.

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.

Routinely

We humans are creatures of habits.  We like consistency or at least routine.  Even those of us who claim we don’t, we do.  Want the proof, simply take away a standard routine in your day and see what happens.

Allow me to share, every Monday I receive a motivating and/or uplifting practice to try.  Yep believe it or I do try to add positivity and motivation into my life; having an unrelenting chronic illness can leave you feeling negative and unmotivated.  Anyway every Monday I get one of these emails in my inbox. I look forward to these emails even if all I do sometimes is just read the email.

Yesterday I received an email stating that author of these wonderful things is taking a break for four months.  Of course she is entitled to a break, but suddenly I’m unhappy.  Not because she is taking a break and not because I am applying everything in each email.  Nope that is not what makes me unhappy, instead it is this sense of being set adrift with no directions to follow.

My routine, those moments I spend reading the email and contemplating applying the information, is suddenly been messed with.  It’s not a big deal and I’m already over it, but let’s face it, when someone takes our usual parking spot, it darkens our day a little.  You have a favorite spot for your yoga mat and someone else takes it, well even if you won’t admit it to anyone else, it sucks.  Why because your routine, those moments of consistency and dependable results are somehow soothing.