World number three…

The rest of it all (with a bit of pretty at the end).

Dayne’s father died a few months back and he’s never quite rebounded.  He was there with his dad right up until he took his last breath and was the only one in that messed up family able to make the hard decisions that needed making.  It was emotionally raw and tragic for Dayne and he fell apart in a way I’d never quite seen before.  It scared the crap out of me, honestly, as Dayne is the strong one.  He’s the one who protects us all and keeps us safe from all physical and emotional threats out there.   To see him down was terrifying.

If you read previous posts (there are a lot I just drafted and didn’t publish so I’m not sure exactly how much I’ve shared here) there was a renewed engagement with his half sisters and step mother for a brief period as they united in their grief.  I was worried about the expectations that were being hinted at….that we would be in close touch with two sisters I really don’t much like (for many reasons, most of which involve their treatment of Dayne for all of their lives) and that we would be starting to visit his step mother.  I make no secret of my distrust and general dislike of these people (to Dayne, of course, not to them directly) but I told him I was willing to take part in whatever he felt he needed….whatever what he thought was best for him and our son.  I reached out to them all after George died and was either rebuffed or was sent a long list of complaints about how Dayne wasn’t living up to their needs.  He did try to offer them as much support as he could, even going to visit his step mom on several occasions, but they all started up the same old bullshit and the lies began to pour from their mouths.

The step mother said one thing about George’s belongings and estate to Dayne, another to the sisters.  We were told everything of his was gone…sold and given away so there was nothing left for Dayne.  The sisters were allowed into the house to take whatever they wanted of their father’s, provided the mother wasn’t wanting it.  George had a lot of computer and electronic things that Dayne would have enjoyed playing with and/or just having, knowing his dad had treasured them, but it was not to be for him.  In the end, all he asked for was one of his dad’s work shirts, a portion of his ashes and his old, favourite coffee mug.  The shirt was given to his sister, the mug is nowhere to be seen and the ashes are being held for ransom at the step mother’s house.  Dayne is struggling between trying to do what he knows his dad would have wanted and to protect himself from more pain delivered by the hands of these women who spent so much time hurting him.

As it stands right now, we have nothing of George’s and we’re not sure that anything at all will come our way.  Dayne is making peace in his own way but, seeing the outright terror in my eyes at the suggestion of making these people a part of our inner circle and having them become actual family, he’s not really talking about it much with me.  It’s hard.  I want to be there for him (and I am) but he wants to protect me.  He wants to talk to his dad or his best friend, both dead and gone, about these things and not lay them on my lap to deal with along with the rest of our lives.  I’m trying to support him in every way I can.

Work is stressful for him too and he brings that home too.  It’s too much…all the stress of his work, my work, Colt’s future, his dad dying (and grandmother shortly thereafter, although, Dayne’s mother insists that she was NOT his grandmother as he is NOT her son).  Throw in the medical soup I’m currently swimming in and we’re overwhelmed.  I just want to find a way out of this for all of us….run away somehow and not face all this stress day after day.  In the end, we mostly sit and don’t talk about these things, choosing to treasure the precious  moments when we can be a family without death and work and disability and disease clouding everything over.

The narcolepsy is sort of under control for me right now.  Stress makes it worse so yay me….*sigh*  The nightmares are not as bad and the sleep walking has slowed dramatically since taking a sedative at night to make me crash.  The Modafinil is keeping me mostly awake through my days but the stress at work is making me feel like I’m going to have a freaking heart attack if I take my afternoon dose through a stressful moment.

The arthritis is making me want to rip my entire skeleton out of my body and stomp on it until its gone.  Spring is hard.  I’m in so much pain I can barely stand it some days.  My spine, neck, shoulders, neck, jaw, face and head are never quiet and even when I up the pain meds and anti-inflammatory meds I only get the edge off long enough to have my entire focus on it all day.  It hurts to sit, stand and lie down.   I have seriously limited mobility in my neck and just….owww.  Everything hurts.  Everything inside, everything outside.  Nerves are screaming down my arms from my shoulders, through my face from my neck, down my legs from my lower back.  Double sciatica and a funky new foot drop that accompanies has made coping with the rest all the more fun.  I need more meds to keep this under control but the pain meds are sedating which throws off the narcolepsy issues and I end up stressed, heart pounding in my chest, exhausted, nearly falling asleep on my feet and in so much pain I can’t even figure out what to do to relieve it….even for a moment.  Luckily, the night meds keep me down so I don’t wake up every five minutes in pain…..that said, waking up is dreadful and takes far too many moans, groans and agonizing movements for someone my age.  My spine feels like it’s all bone-on-bone from the very top to mid shoulder and then I have two particularly painful areas thoracic and lumbar.  My doc wants a new MRI but I’m not too anxious to get it done.  I know the drill by now….I do the tests, they look at them, they say “woah that’s a lot of degeneration for someone your age” and then I’m told I can either up my meds or cope.  I don’t really get to up my meds without worsening the sleepiness, which is already freaking terrible, so I just go on, as I was, just with more pain.

So hooray.  I’m tired; still dreaming; exhausted; stressed; worried; worried about Dayne; worried about Colt; worried about work; in pain from head to toe and basically just living from day-to-day because I don’t have a good enough reason not to.

Now, time to sleep.  As long as I can keep the depression at bay, I’ll make it through all this.  The good news is that we bought a gorgeous gazebo for the back patio and it is up, decorated and feels like an escape from everything out there in the shaded sunshine.  My photos are keeping me going – some are so beautiful they surprise me.  That’s a wonderful thing to be thankful for.  Dayne found me a photo printer and surprised me last week so I’ve been running it dry for days.  I’m going to surround myself with images I love until something changes and I can let go of some of this horror I’m dragging around with me.  Here’s a few I put up at work to help me remember the good in life:

IMG_6943-001IMG_6984-001IMG_7206-001IMG_7314-001IMG_7658-001IMG_7446-001IMG_7537-001IMG_7608-001IMG_7242-001

 

 

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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

One response to “World number three…”

  1. KittyHere says :

    Amazed that you are coping so well with all aspects of life. Practice I guess plus determination. Hope organizing it all into these entries helped. Good reading. ❤️👏🏻

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