Monday, March 21, 2016

For me...

I have had a thought ruminating for quite a long time until I just couldn't keep it to myself anymore.  A secret desire thought.  A thought about my house.  You see, I have five bedrooms and only one of them is really mine.  The rest, they are all for others.  Only, I have wanted the solarium to be for me.  Gosh, that feels so selfish!

It's just so crowded.

I use it to winter my plants, but I think of it primarily as a place for folk to sleep.  You see, in my mind's eye, I envisioned my home a have for visitors, especially given the traffic to the seminary and its January conference.  And I guess I thought I would have my own personal visitors.  I have had a few. And there was the Grand Visit of 2015.  But really this ginormous amazing incredible dream mansion of an old house is empty.

The solarium is absolutely filled with light.
Why am I not basking in it?  I ask myself.


I took apart one of the beds.

Following a suggestion of my mother's, I used two footboards to make a daybed.  Suddenly, the room became much larger.

I wanted a chair up there and thought about moving the GREEN chair (with help).  Mother suggested I move the GREEN rocking chair from the back porch.  [NEVER!]  I patiently explained to her that I am in it every day.  So, I looked on craigslist, eliminated all the non-economical rockers, and asked my interior designer mother to choose.  I thought I would be painting another old chair GREEN.  She surprised me with picking this style, given my house, but really does well in a solarium.

I want a floral rug.  I have no money for a floral rug or any room transformation as it is.  I did use almost the very last of this budget cycle's grocery/household money because I have just 7 days left.  After, you know, bargaining down the chair to $30.

As you can see here, I also dragged the area rug from the basement laundry space as a temporary filler.  To be blunt, I am fervently hoping that I receive some birthday money come June and can buy me a lovely floral rug.  Amos, however, needed something to land on after getting down off the bed.  And the room was ever so incomplete without a rug.

Mom then weighed in again.
Move the furniture.

I am not sure she understand how much puking and fainting I do when doing the things I shouldn't be doing.  You know, like moving furniture and playing hide the mattress (three rooms before I figured where to put the boxspring and mattress).  I was NOT going to do so anytime soon.  But ... but ... Mother really is a skilled interior designer and she does know spaces.

She had me move the bed to the west window wall.  [No, I did not know which way was west.]  Actually, moving the bed was not too difficult.  Moving the rug, however, changing its orientation meant fainting and falling and Georgie firing up the accelerometer quite a bit.

The room went from really cramped to opened up to feeling rather expansive.  I actually think that I could scatter the three large plants on the plant rack to the left and remove that rack.  But now that at least the large stuff is placed, I really did take a break from my ... my taking back a room of my house.

I fretted (am still fretting) about removing a sleeping option from the house.  Clearly one bed is still up, but one of the twin beds is now in four different locations.  Using a room that is a spare bedroom for a space that is more for me than for visitors feels so darned selfish.  "What if?" I think.  What if making this change means my friend with oodles of children now no longer wants to visit me?  The basement bedroom actually has a twin in the sofa chair in there.  And there is a queen pull-out in my couch in the living room.  I could still fill my house with folk, theoretically, but will that ever really happen?  Probably not.

Secretly (as in not posted to FB), I think that I just improved the resale value of my home, demonstrating the dual use of the solarium.  And, who knows, could a visitor come who doesn't want the full bed in the ginormous guest suite (I sleep in the second largest bedroom, not the largest) but actually wants to stay in a room full of sunshine?  Or, maybe, a visitor sleeps in that mint GREEN solace but savors time reading in the new (old) and rather comfortable (surprisingly to me) rocking chair.  And maybe making the space like this actually makes the airing porch off the solarium more of an invitation.

No, I haven't moved the artwork yet.  I wanted to wait until the bed found the right spot.  And, frankly, I have just a bit in there and they looked less forlorn over each headboard than they do now.  The two pieces in the servant's quarters actually have old GREEN velvet matting on them, so I might play musical artwork before all is said and done.

Would the space look just wonderful with a floral rug?

What tipped me over the edge?  What propelled me past the thinking stage?  My blood work.  Specifically my new GP's response to my blood work.  She wants me to see an immunologist.  I want to lie on the floor, drum my feet against it, flail my arms, and wail ... loudly.  I don't want to see another new doctor.  I don't want to have to find a way to be vulnerable with another new doctor.  I don't want to be touched by another new doctor or her staff (all that endless weighing and taking of vitals).  I don't want to have more exams, more tests, or take more medicine.

I am fairly sure that the issue with my pacemaker scar is going to require intervention, as in another specialist, another new doctor.  And swallowing, over the past month, has shifted from a bothersome issue from time to time to a frightening struggle to get food and drink to go down my throat from time to time.  I am fairly sure that when I more vigorously pursue that issue, I will be shuttled off to another specialist, another new doctor.  More exams, more tests, and possibly more medication.

I don't want more.
I'm good with the incurable, untreatable stuff I have now.

Something the counselor did for me—which I am not sure she understand how much it means to me—was to acknowledge my life, my chronic illness life.  She helped me to wrap my arms around my wretchedness and let it be okay (to me at least) to be wretched.  That hasn't really changed how I am treated by others (support or acknowledgment) but it has helped me to stop punishing myself for things I can no longer do even if I still greatly mourn Healthy Me and grief the losses in my body and mind.

I struggle, when in those FB support groups, with how nearly everyone in there is one this desperate journey to find treatment.  I understand the agony of those who have yet to find a doctor who actually understands and respects dysautonomia, but even amongst those poor folk is this common drive to Find Treatment and Get Better.

There is no Better.

Why do they not understand this?  There is treatment that helps individuals and that treatment may stop helping at any moment.  It is all managing symptoms and usually doing so with medications that have side effects that affect your symptoms.  And lots and lots of resting and water and sodium.  What helps one, may help no one else.  What helps many very well many not help you.  It's all madness, really, this traveling from clinic to clinic, repeating all the testing (especially the tilt table test—once is enough!), exhausting yourself, financially beggaring yourself, and chasing medical rainbows.

I have no desire to chase medical rainbows.

My appointment with the immunologist is April 11th.  I was responsible and called to make one.  To be honest, I haven't yet opened the envelope from her office to see what hoops I have to jump through before April 11th.  Containing my overwhelming feelings of ENOUGH OF THIS has been all that I can do.

That, well, and taking that upsettedness out on the solarium for me.

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