Long Haul Treatment

A long day at treatment today.  It started off with labs have to be drawn and then redone before I was allowed to get my treatment.  Somehow they forgot about me after the redoing of my labs and so I waited.  I waited a little more.  And then I started asking questions.

The problem with asking questions is that sometimes people don’t have the answers to your questions.  So when I asked when I could expect to start my treatment, no one knew.  As a matter of fact a few people assured me I wasn’t there for treatment, just labs.  As though I was confused.

After a few phone calls and a wonderful specialist who responded to my concern, I got treatment.  That was about four hours after I was supposed to get it.  And since there was a huge delay, my normal medical staff wasn’t available.  This meant new people who refuses to listen to me explain where they wouldn’t have any success with my veins etc.  This led to another thirty minute delay.  This all made for a long day.

Some people don’t understand how simply sitting in a chair while your body is pumped with toxins can be exhausting. Trust me it can be.  The same as the hurry up and wait process.  It can be all rather draining.

Stretching Things

Sometimes a stretch feels so good it’s hard to stop.  Now and then I will lean back in my chair and stretch my arms back and out.  And it feels delicious.  So delicious I do it again. And again.  And then I decide to hold the stretch.  And then it goes from delicious to me no longer being sure why I held it like I did.

Other times a quick stretch works, it doesn’t feel delicious so I don’t keep doing it or holding it, or going deeper into the stretch.  Ah yes going deeper into a stretch to wring out every last drop of delicious feeling.  Pushing things just a bit more.

Perhaps I’m weird, enjoying this stretching now and then.  I like to think it’s a case of channeling my inner four-footed friend.   Inner cat as well.  These animals may be on to something with all this stretching.  Not that any of them told it feels delicious, but I bet if they could talk, they’d be saying how marvellous it feels.

I wonder if they stretch to the point of losing that delicious feeling or if that’s just the excessive nature of being human.  Or maybe it’s greed on my part.  I’d write some more about my thoughts on this, but I feel a stretch coming on.  A delicious one at that.

Positively As Intended

If you think positively, if you really put your intentions out there, good things will come. I’m pretty sure that’s what I heard the guy on the television say.  I’m not certain though because my inner voice was having an argument with the man with it being something like if this all it takes why are so many people not reaping this benefit?

Sure there is a place of positive thinking and setting intentions.  But the is this other thing, a small thing really.  It’s called reality.  Reality doesn’t worry about what you have set or how you think.  Reality just happens.

Now you can say positive thinking will help you find a new vantage point to assess things from when you need it.  That can be good.  It can be helpful.  Provided you haven’t flown off to cloud cuckoo land.  Unless that was your intention.  Then alright.

Beloved and I aren’t into it always being about positive outlooks.  We are of an age where life has taught us both that this can’t always be the case.  Soemtimes life has a way of knocking you down and it can be hard to get up.  We learn from those times.  And sometimes something unfortunate happens, but rising from that is a new opportunity.  But not always.  At least not in our world.

Draining And Cellphones

My phone has been doing this cute little thing where while I’m charging it and the battery shows  its level as dropping.  While still showing its charging.  I’m not impressed to put it mildly.

Listen I get being drained while you are refuelling. No, seriously I get it.  I get it because it happens to me.  I will be innocently refuelling, and by refuelling I mean eating or more importantly drinking coffee, and some person will come along and want something from me.  And I can feel my precious energy draining away.  With each word this person speaks, I am robbed of some precious energy.

This means I have to do double the work just to get my energy levels back to where I was aiming for before I was drained by some rude interruption.

Now a word or two here about people and interruptions.  Some interruptions can’t be helped.  I get that.  And sometimes the nature of those interruptions are draining, nothing you can do except push through it.  But let’s face it there are some people who are just drains on our energy reserves.  It’s just the way they are.  I’m sure they don’t mean to be and they may not be aware of it.  But we all have someone in our lives that requires more energy.   And some times, well sometimes I’d rather not have that drainage visit itself upon me.

Today dear friends, today the drainage not only visited me, oh no.  This person would not leave.  Couldn’t take the hint.  Or a slightly blunt sign that I needed to have said person leave me alone.  And now I am trying to recharge my energy levels.

Safety, Security, Peace Of Mind

What does it take for you to feel secure and safe? Is it a number of locks on your door? Perhaps an alarm system in your house that is set to all your windows and doors. Maybe it’s a large dog to keep watch. Or perhaps other humans pulling watch duty in rotation. Then again perhaps it’s just the right address, on the right side of town on the right side of tracks. Maybe that’s all it takes for you to feel secure and safe.

There was a time when it was nothing to feel safe. Just knowing certain people were there to take care of me, chase the monsters from under my bed and do all the worrying about the big stuff. Of course as I went out to explore things a bit more beyond the comfort of home, it took different things to feel safe. Such as walking in a group when it was dark, and the lighting was poor. It was knowing that I could run to safety if needed. It was looking the door, slamming a dead-bolt  and securing windows.

But when you have been harmed in some way, it may take more to feel safe. It may take a village of sorts to help you feel safe and secure. Frankly after a traumatic experience I literally wanted a bolt hole or priest’s style hole. Just some safe place, hidden, that I could lock myself into if needed to avoid harm and such. Of course, I didn’t get it. And over time, and a lot of rethinking of things, I was able to come to terms with the violation of my space versus what happens to some people. But do I feel safe and secure? Not always. Not always even if Beloved is home.

Rediscovery Or Taste Of Grass

The four-footed one discovered the roots of grass today.  Well technically she probably discovered them before.  So maybe it’s better to say she rediscovered them today.

When she was a puppy she should signs of being a digger and a chewer.  She lost the urge to dog much sooner than she lost the urge to chew on things, granted she was teething too.  For the longest time after she was past her digging phase she’d find grass patches to push her nose through, but nothing more than that.

A few days ago I noticed she was basically pushing her snubbed nose into the ground, and in dogging so she had managed to make a small depression in the grass.  Telling her no put an end to that.  Although she opted to smear both sides of her face in that depression.

Today she was stealthy.  She found a small, section of grass not immediately visible from where we were sitting.  And once she checked that she was safe (I assume that’s what she did) she got to work.  For all I know she blissfully used her nose first to make her depression.  When I saw her, she was digging with her front paws.  Enthralled and engrossed in her task so she didn’t hear me come up on her.

Thankfully she didn’t make a deep hole, it she wants to revisit the spot.  She is pulling at the grass and chewing on the roots of the grass.  She doesn’t eat it.  She just chews it and spits it out.

I’m all for discovery and following yours passions,just not at the expense of the lawn.  I have enough issues keeping things green so her digging is not going to help.

A Break From Lupus

You never really know what’s happening beneath the surface.  Some people are phenomenal at wearing disguises.  The cracks are well hidden behind masks and illusions.

Beloved tends to be a calm pond, barely a ripple crosses his surface.  Typically when it does, when he sighs in exasperation, it’s an indication that not only is all not right in his life, but what is wrong is seriously wrong.  Swift currents run beneath that almost peaceful facade of his.

He’s not a man prone to snapping, getting cross or short with anyone.  And yet today he was.  He was short with the four-footed one as she demanded in the house and then out of the house.  Repeatedly.  For hours on end.

He was short with our neighbor who offered to help with some of the work in the garden.  To be fair, our neighbor has an amazing green thumb to our black thumbs and so our neighbor took pity upon the plants.

Mostly though he snapped at me.  He snapped because I was supposed to be elevating my swollen foot, but he wanted help wi the house work.  He snapped when I got tired of the barking from the four-footed one.  In fairness my foot is throbbing and in pain, but apparently that’s not something I should have said or expected to be accepted as a reason.

He snapped because he didn’t want to be doing stuff, he wanted to spend his time his way and saw my inability to do things as me sitting and doing what I wanted.  Except I really didn’t want to sit today.

I get it though, I do.  When someone you love has a chronic illness like lupus it’s easy to mistake his/her exhaustion or pain as signs of being lazy.  And it grates on you.  It wears you down the way the pain wears me down.  And it isn’t the life you signed up for; you signed up for a life of collaboration and team work.  I get it.  I live it.  Every day as I struggled and find my place in this ever shifting world of limitations and new expectations

Its times like this when I just want to tell him to go.  Just go and do what he wants.  I will find my own way, some how.  But he doesn’t.  Because there is this odd thing called love and that tends to overcome al these annoyances that make you snap and get short at times.  Those are the times he needs some space from my and from him.  So if anyone is looking for a short-term house guest who’s a decent cook let me know and I will send him over.  You don’t have to hurry to send him back.  He needs a break from lupus.

Sounds Of Enjoyment

Beloved is the kind of man who likes to listen to fountains, burbling water and bird song.  So we have a bird bath, a bird feeder and a fountain in the garden.  No creeks or such though.  When he can, he will take himself out into the garden with a drink and a book and just enjoy himself for as long as  he can stay out there.  (If the bugs are too much he will come in.  Or if the four-footed one is wanting nothing more than to play and run around, he will come in.)

I’m the kind of person who likes listening to rain on a tin roof, the roll of thunder and the wind in the trees.  Frankly I will settle for just about any kind of metal roof being splattered with rain if tin can’t be found.  Up until recently we didn’t have this feature in the garden, but thankfully we recently updated the gazebos to include one with a metal roof.

I can’t spend as much time as I wanted in the structure though as there is a bit too much sun exposure, but it has provided more shade for me to stay out longer, and it has the added benefit of making beautiful music when the rain hits it.

Beloved isn’t a huge fan of the “noise” from the rain on the metal, but the other day I caught him sitting out in the gazebo while it was raining.  He claims it was okay because he could hear the birds, and the water sounded a bit like a fountain.  Sure it does! And hey if that’s what he needs so he can enjoy it out there, so be it!

Not Exactly Planned

It was supposed to be an easy day, a bit of this and a bit of that followed by time to relax. That’s not what happened, but then how often do things go as planned.

The this and the that took far too much energy, time and effort.  I was exhausted, in pain and no longer looking forward to time to relax.  Collapse yes, but relax?  Nope.   Not in the least.

Bu the time I got home the thought of holding a book was beyond comprehension.  As was making a meal or walking the dog.  The only thing that seemed within my ability was to flop down and rest.  And hope the pain, swelling and exhaustion all started to decrease.

Thankfully someone else was able to take the four-footed one for a walk.  And prepare the food. And basically allow me to rest. I’m not sure how many times this scene with lupus has played out.  And just about every time, Beloved is the person who picks up the slack and takes care of the stuff I can’t do.

if you were to ask him, this isn’t what he asked for.  But he does it without hesitate or fear.  Because as he also knows, life never goes exactly as planned!

Pinging And Ponging Along

I don’t play ping-pong. It’s not my thing, never has been and never will be. Now having said this, one of my friends loves to play ping-pong. This is where she does her best thinking, sorting out her problems and yes talking. Which means if she is having an issue, she wants to deal with it while playing ping-pong. Or if I need her guidance, she wants to do that while basically chasing a tiny ball around a tiny table.

So recently I found myself at a ping-pong table with a paddle in my hand looking a crushed ping-pong ball with a bit of dismay. I had stepped on it and crushed it. Part of me was delighted that the ball had stopped bouncing all over the table, but the other part of me was upset that I had broken the ball.

We were playing the game, while rather she was playing the game while I was becoming frustrated at this uncontrollable ball going everywhere and making me looking highly inadequate. (Okay so besides hand-eye coordination issues, there is also the overall clumsiness that resulted in a ball being crushed and frankly an overall sense of being foolish.)

To be fair she was a bit upset as she was explaining how her husband, a wonderful man, seems to be unable to put dishes in the dishwasher. He can put them in the sink next to the dishwasher, but apparently opening the door to the dishwasher is too much for him. So she was a bit aggressive with her paddle on the ball and I was stumbling the way her husband might do while loading the dishwasher.

We all need to have a way of dealing with our issues, but I wish to heavens she wouldn’t insist on putting me so far out of my element that I have no sense of how to even reach anything. Or maybe that’s what she needs, to know that her vulnerability is also mine. And mine is hers. And life is that silly ping-pong ball bouncing all over the place.