Monday, January 30, 2017


It's 11pm on Monday, January 30th and it's quiet.  Yes quiet in my room, but more importantly quiet in my body.  Unrest, formally Canary in a Coal Mine just premiered at Sundance and its name change is perfect. We are never resting, despite often being in bed.  This is the first time I have felt that quiet since New Year's post.  Thirty days of constant fighting.  It's a silent fight on the outside, unless of course my asthmatic cough starts up, otherwise the cacophony of symptoms hide behind my skin.

Beautiful Moon and North Star

My help left me.  The help that said she wanted to keep this job forever just a few months ago "resigned" laughable using such a big fancy word when she really fled.  Knowing the chaotic mess that would bring to me, my family and my health.  I think I still need more time to go into what happened; betrayal, confusion, concern and unfortunate clarity when someone is not who you thought they were.  Or perhaps they were and then due to situations unknown became someone unrecognizable.  So now I feel like my own house is like going a new year of boarding school.

My parents have extended their stay, while I found people to interview.  Settled in on two people to share the four days.  Christine is still with me, my life line.  Last week the new people "trained" aka followed my mom and Christine and it is an emotionally difficult situation for me.  When I get use to someone and comfortable and enjoy them I suspend my reality that on some days I'm Lady Mary, a snobbish aristocrat being doted on for no reason but of course who wouldn't want someone to comb their hair?  Then somedays I'm a pain in the ass pop star that can't be alone and is in need of an assistant because they are too lazy to get up and turn the light off.  But in the beginning, the looks of new people trying to understand my bizarre reality shines a spotlight on how this is so not normal.  It makes me uncomfortable, it makes me scared for the future, it bursts my fantasy and reality smacks me in the face.  It is humbling and uncomfortable for all involved.  And it is a necessity.  That is what I hate.

Sweet Baby

My parents leave Thursday.  The new people then had today thru Wednesday to be here with "back up." Today we needed the back up.  Despite my warnings about scents, and the person today prior never having any today the scents entered my room before she did.  I had a particularly rough time around 6am up a bit itchy and hot and uncomfortable.  And that's all it takes, one little thing to set the body into a full blown blaze.  I ignored it at first.  Tried to eat my breakfast as she was downstairs.  Then she came up to ask if I needed new juice and I asked if she happened to forget and wear perfume.  No - nothing.  Then I said laundry detergent, no use unscented….and then what about drier sheets.  Bingo.  Oh my goodness I just washed this yesterday.  And I said, you have worn really cute sweaters before I bet you don't put them in the drier.  Bingo again.  So she went and took the sweatshirt off, by now I've begun to cough.  Get it the Fuck together is ringing through my head.  Begging my body to chill the hell out.  I open my porch doors, sit outside and she comes back and I still get a whiff of something….are you sure there isn't something else, maybe hair spray.  Bingo again…oh no I did do a dry spray leave in conditioner.  Yep okay strike two.  Now she's apologizing as my lungs clearly are congested.  And she needs to go home and I say just come back after we get back from the doctor.  I am now doing my nebulizer.  Mentally and physically exhausted.

I eat my ham sandwich, yogurt, raisins and a cookie. Have a Coke.  We drive to the doctor.  I've done a new medicine, another post, and she does a color puncture treatment since we think I'm too tired to try the blood treatment today.  I get back home - all I want is silence and my bedroom.  My helper is back - sans all the scents and I can hear her downstairs.  And here's the thing I really don't want to talk anymore.  No need to apologize, it just is what happens.  And I can tell my parents are worried that I'm not sure I'm sold on this fit so they begin to both separately tell me about how she went and got unscented products.  Or did I realize her son who just had the baby is moving to Houston…and finally - the bitchy sick person comes out….

I don't care.  I really don't fucking care.  I have so little energy for people I already know, for myself, for getting through the day right now all I care about is can she take care of the house, my dog, my food and that's it.  It sounds very unlike me for those that know me.  But I'm tired.  I am tired of being scammed by people that take care of me, tired of being concerned about their problems when I have friends and family that I can barely give my energy too.  Enough; stop with the hard sell.  I know this is super stressful, you are leaving in 3 days and I will need to deal.  It is not ideal but it's my life.  And I'm tired of pretending this is all so glamorous.  That's how I survive.  But today, I'm tired and I have just had enough.  My parents will leave, the two new people will be here like it or not I will be grateful I have help, grateful I am in Phoenix for the winter, grateful if I have a good hour, and I will just have to deal even if it isn't the perfect fit.  It is not fun being dependent upon others - it downright is miserable.  But I am lucky we can afford them and I will adapt, period, end of story like it or not.

I have one caregiver here that is family, Christine.  I have one back in WI that just checked in on me.  I have 30 days unttil my family returns.  That means 9 days with Christine and grin and bear the rest.  Who knows these two may become just as close as the others, but I'm not there yet - this is not an arranged marriage or a dating site or a best friend app.  This is someone I need to just do the job, not take my energy with chit chat.  It's a hard job.  People don't think that when they start.  But it is a balancing act and you are also watching someone who is not well - and that is stressful.  So when the new care giver left she started in on maybe tomorrow will be a better day or hope you feel better or a blend of that and I just looked her dead in the eye and said I've been dealing with this for over 8 years.  Tomorrow will be a version of today.  And she sweetly said I get it, will see you tomorrow.  And as she left what I said in my head follows...

Today I have lost my ability to sugar coat - so please don't do it for me.  It puts undo pressure on a situation I have done my best to be the best patient I can be yet despite many good things at the end of the day, I haven't driven besides a mile from my house in 3 years, I haven't eaten at a real restaurant in almost 4 years, I haven't been out of the house besides the doctor except a handful of times, and the list goes on…so please I know it's well meaning and hopeful to come in and cheer me up but really it's cheering yourself up- cheering me up is knowing I have food in the refrigerator upstairs if I get in trouble.  It is making sure my room is exceptionally neat.  It is making sure you put waters next to my bed.  It is being quiet when I'm not responding.  It's respecting that I have a life, not what it use to look like, but a life and your job is first to do the job and then well then who knows but lets just start there.  And I know it is counter intuitive and difficult - that's what I told you when you started.  I'm not always the most pleasant of peaches…but I do my best.  What I know for sure is she seems kind and thoughtful and this hasn't nothing to do with either of these caregivers.  It has to do with needing something I don't want to need.  It has to do with for the second time being stolen from people I trusted.  It has nothing to do with them; and everything to do with I just want this to be over.  And new people remind me I'm not even close.

Well just because she's so darn cute !

But at 11pm there was this glimmer of quiet that ran through my body rather than the chaotic hum.  I went downstairs and fed Sophie a late night snack without being short of breath or weak.  I brushed my teeth and it didn't feel exhausting.  And I just sat upright in bed and enjoyed the peace.  I've had decent moments in the last month but they are moments of pushing through.  The effortless feeling in my body, that is a gift that got me to grab the computer and put it down for myself.  So I can whisper to myself on the bad nights…it will pass.

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