Avoiding The Unavoidable

I’ve been putting off tomorrow’s appointment for as long as I can.  Now I have nothing against this doctor, honestly he is a sweet and helpful man, but I just have been avoiding seeing him.  Because we both know where this appointment is going.

I would have continued to postpone this appointment, but while trying to get a prescription refilled I was told I had to actually see the doctor this time.  Gulp!  Oh sure he will be his usual pleasant, polite self as he tells me we are out of options.  No more putting this off.  And I will sit there in that small black chair and grasp at some other straw.  Anything other than a hospitalization.  Again.

Last time we danced around this very topic I was literally saved by the bell.  The fire alarm to be exact.  Going off down the hall so we got evacuated and by the time I got back, I had figured out my strategy was to take another six months just to really test how the current medication was or wasn’t working.  I think because he was somewhat distracted by things, he agreed to my request.

Short of getting another fire alarm this time, I somehow doubt I can ask for another six months of poor results and further health complications.  And it isn’t that I want to get worse, I just.  Look it’s a hospital.  Not my own home.  It’s not my bed, not my things and not my routine.  It means needing help…more than I care to have.  It means being vulnerable..more than I care to be.  And none of these things comes with the promise of getting better.  If I’m lucky they come with the promise of being stable.  Which frankly would be nice, I suppose, but it’s been so long since I’ve been stable I am kind of comfortable in my instability.

Of course Beloved has decided that my instability with how lupus affects my organs may migrate to making me irrational.  Why else, he wonders, do I put off what can help slow down if not prevent damage now.

Of course it isn’t him going into the hospital.  The freezing cold rooms.  The noise and smells.  The routine not like mine, the insistence that I rest when I have much still to do.  The food isn’t the same, the dogs won’t be there.  Oh I can draw a huge list, but before I get too far down the road, I will spend some time seeking straws to grasp for tomorrow’s appointment.


Sleep, Lupus and Me

When I was young, I hated going to bed.  Having to go to bed while the night was still going on without me seemed a cruel torture.  Sure I needed sleep, sure I needed rest, but still it all seemed so wrong especially since adults got to stay up and do all sorts of adventurous things.

As I got older I still fought this notion of sleep.  Oh sure I got enough, but it wasn’t an 8 hour sleep, more like 5.  I guess I became a bit of an expert at stretching out “just five more minutes,” into hours.

Some people will say his is insanity, that sleep is restorative and healing, especially if you have a chronic illness like lupus.  The is, if  it’s lupus you are exhausted all the time anyway, no energy no nothing.  I figure it’s kind of greater payback for me not taking sleep or rest so seriously before.

Now my body demands that I slow down, that I cease stretching those 5 minutes out so far.  And now I have other people, people who love me and care about me beyond my biological family, reminding me that I need to rest.

There is a part of me that still, even with the bone tired exhaustion of lupus, wants to push back, stay awake and not miss a thing, after all rest will come when im dead.  And a dear friend reminds me all the time that my death cannot happens or a long time, that there is need for me to be in this friend’s life. ☺️

So I am begging you to supply me with the titles of some good bedtime reading. In an efforts of help me not avoid rest so much!  I figure I will start like you do with a child, a bedtime story before it’s lights out.😉