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.


Lupus Interrupt-us

The four-footed one stretched her legs before curling up tightly against me as if to tell me that staying in bed was just fine with her.  She tends to do this when there isn’t another human around to take over this task.  Perhaps she should do it even if there is a human around because I’m more inclined to listen to her.  There’s just something about her soft, warm body curled up against my tired, hurting body that works like magic.

So we stayed in bed, well her own the bed and me under the covers for a little longer than sunrise.  And we missed Beloved’s phone call which came shortly after the sun had risen.  We called him back later on, when we decided that staying in bed wasn’t going to make a difference.  We told Beloved that very thing, no need to be in bed to rest when we could just as easily rest in chairs and such.

When we had gathered enough energy, while to be honest when I gathered up enough energy as the four-footed one always has energy to spare, we headed to a comfortable chair for a snack and a nice book to read.

A nice lazy day?  Perhaps to some, but to us a day when lupus interrupts our routine of a sunrise walk, an enjoyable coffee and open to whatever adventures the day brings is more what it was.

When Denial Is Hard To Deny

I set out today with a list of things to achieve today.  Nothing  too exotic or too intense, just a few wee last-minute items for Belved’s Christmas.  A total of three stores, one item from each store and thankfully none of the items were far from the store entrances or tills.

I  felt confident I could accomplish what I set out to do, and I’d still have half the day to spend with Beloved.  And there in lies the problem, I felt confident.  Because the errands  weren’t too challenging.  Not for a healthy person.

But I have a bad habit of under-estimating lupus.  It may be a form of denial to be honest.  How else do you explain all the years I’ve lived with this illness and still can’t figure it out?!

So I started out full of hope and energy.  I made it to the first stop no problem.  Located the item, stood in a small line and paid for said item.  Then I hopped in the car and headed to destination number two.  Somewhere in the driving I lost some of my energy and most of my enthusiasm.  But I made it to the store, parked the car and realized things had changed.

no spring in my step, just a sheer determination to get what I needed and get out.  I located the item stood in a much longer line and realized item number three was a no go.  Not today.  It was all I could do to get home and try to smuggle the gifts into the house without him knowing.

This is the part I hate, the not having enough energy to share with others, to spend with loved ones.  And the thing is, I can never truly figure out exactly when I’m running low until I’m just about there.

I feel as though I’ve let him down, as though I can’t keep promises and am unworthy of his love.  Which, he constantly reassures me is utter bunk.  But sometimes bunk is so easy to believe, especially when I’m in the midst of lupus being in charge.

hopefully the bunk leaves with lupus soon and I can finish my today’s list tomorrow or so!

Emotional Struggles With Lupus

The thing with lupus is that it is a holistic illness.  By that I mean it gets wholly involved on one’s life.  There is the physical aspects of the illness, certainly those can’t be denied.  Joint pain, rashes, swelling of joints and the pleura to name a few.  Then there is also the mental aspect of the illness, brain fog or depression for example.  For some people lupus can impact their spiritual life as well.  Having an illness like lupus, complete with ebbs and flows can make a person feel separate from religion, higher power and wondering what she did to deserve this extent of punishment.

Lupus can also impact a girl’s social calendar in a negative way.  As we come into the holiday season this girl finds herself having to pick and choose rather carefully which events I attend and which I decline.  This is no easy task.  I have come to the conclusion at it’s a bit like picking one’s way through a minefield.  Not that I’ve ever actually walked through one, just the emotional responses to my accepting or declining invitations.

And while I will not paint a picture of all rainbows and sunshine when it comes to my adventures with lupus from a physical or mental aspect, I must confess its the social aspect that is the hardest to manage for myself.  You see for me lupus never comes alone.  Nope, lupus has some luggage with it, that being guilt.  Lots of guilt.

Friends, I have guilt about having to cancel at the last-minute plans I had agreed to earlier in the week.  I have guilt about letting people down, disappointing people and being unreliable.  I have guilt about being able to attend something one day and then the next be unable to do anything at all.  And let’s not begin to consider the major events I’ve struggled to attend and in some cases miss due to lupus flares.

I remind myself that no woman is really super-woman and even a healthy woman gets rundown during this time of year.  I also determine which events or visits will allow me to mingle and enjoy myself while being present with friends and loved ones.  And this is the one time of the year that I have less struggles in accepting help.  Now if only I could work on asking for help and not just during this time of year! 😉

The Joys Of Getting The Upper Hand With Lupus

I have a strong dislike for summer colds.  Truthfully I’m not supposed to get one.  Not because there is a law out there that has proclaimed this, but because on theory my over-active immune system should kill ever foreign thing immediately.  But of course we don’t want my body to totally destroy itself so we take meds to knock back the immune system.

And knock it back we did.  To the point of the summer has been chasing one cold away after another.   I’m tired folks.  Bone weary, muscle fatigued exhausted to be honest.  And I’m frustrated as heck too.  We finally get lupus somewhat under control only to be continually sick.

Dont misunderstand, I get that compared to what other’s face this isn’t much.  And I’m truly grateful if this is the extent of my woes.  I just feel like I can’t  even stop to take a breath before I’m getting hammered down again.  It gets old fast.  And draining.

Well okay energy draining because I just caught a good look my feet and I can assure you there is no draining happening there.  Instead we are retaining, because well the kidneys don’t like me being sick.  Of course the kidneys really just want a break, a nice long vacation with no nothing.  But sick with a cold or struggling with lupus seems to be my only choices.  Not sure which is the better of the two these days.

So while the world economy seems to struggle and limp along rest assured my friends, if you have stock in Kleenex and other facial tissue, I will be our chasing (heck I probably already did) huge amounts.  The kind that make the revenue go up.  The kind that make stockholders sing with joy.

If you are looking for me, I am the squashed little heap of human being, the one impersonating Rudolph the red-nosed reindeer.  Mine almost glows and heavens I swish it would stop flowing!


Whacking Lupus

My life has become a game of Whack-A-Mole.  Sometimes I’m the mole getting whacked when I pop up out of my hole and other times I get to do the whacking.

These past few weeks I’ve been on the receiving end of too many, overly enthusiastic whackings. Probably from some overly energetic toddler.  I may have a concussion. 😐

Now into everyone’s life a little rain, er whacking, must fall.  It just seems to be a bit in excess if you ask me.  I need a break.  As in breaking the bat that keeps hitting me.

I’m okay with life hitting me now and then, that’s fair it happens to everyone.  But these past weeks lupus has discovered the game and taken to hitting me with a zealousness I’ve not seen since watching a young child master telling time.  When that you child was given a watch and learned to tell time I had an update on the time every few seconds.  Minutes were celebrated with glee and clapping of hands.  And there came a moment when I wanted to take the battery out of the watch just to get a break.  I want to do the same with lupus.  Take the battery out, beat it senseless with the bat and then beat it an it more for good measure.

I’d do it too, but I’m just trying to find some energy and yes I dare say some courage to pop back out of my hole.  I’d be ever so grateful to whoever has the bat, if they’d start a new game called Whack-The-Lupus-But-Not-The-Patient.  Thanks!

Real Life Versus The Fairy Tales

I was just sitting there, trying to muster up the energy to put my earrings in when Beloved  came into the room.  He was just doing up his tie when he stopped cold.  I don’t blame him.  I looked like a cake topper of sorts.  The dress was at least two circus tents worth of material, although there was not a stripe to be seen.

I had showered, done my hair, put on the dress and fixed my face and now I simply didn’t have it in me to put in my earrings.  And we still had the night to get through, a charity function.  Beloved had been looking forward to this function, the food and the venue promised to be wonderful.  What we had heard for entertainment sounded wonderful.

All we had to do so get there, which meant shoes needed to be put on, I needed my bag and my earrings.  And then a short drive to wha promised to be a wonderful time.  And now, because of earrings there could be an issue.  Beloved offered to put in my earrings, but we both knew it was more than just that.

He asked me what I wanted to do.  We could stay home, he assured me he was okay with this.  Or he could put in my earrings and we could head out and play it by ear.  We’ve done both before and experience has taught me that playing it by ear is not the way to go.  It means he can’t enjoy himself in the least.

So I suggested he go alone.  I’d stay home, rest up and hopefully the energy would come back as my fingers stopped swelling.  I made this suggestion as he was trying to get my foot into my shoe.  It wouldn’t fit and I was beginning to feel bit like a girl whose foot was the wrong size for the glass slipper.  So I stopped him, told him to go and enjoy himself.

Instead he helped me out of the cake topper of a dress and into something more comfortable. He made sure I had books, snacks and medication near me as well as the phone, blankets and pillows.  He brought me the dog, kissed me and told me he was going to Save his dance card for when I felt better.

this is sometimes how our life is, sometimes lupus gets in the way.  He does a much better job of dealing with it all than I do.  There are times I rage at how lupus creates issues.   But him?  He takes it in stride, waltzing gracefully to the changes as they come.

He was as good as he promised, he came home and we “danced” while sitting on the couch.  And so you see, my foot may not fit in the glass slipper, and just  maybe he isn’t a prince , but he’s my ever-after.