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I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.

Saturday, February 15, 2014

Beaded necklace and Schedule Nightmare

Tonight i have decided I am going to make a necklace, it will be in the works all year long.
A visual way to see and I guess take control over all the medical procedures and such happening in my life. 

I got the idea from that of what many children in hospitals fighting cancer do, Beads of Hope.I guess perhaps because I am feeling like I have no control over anything in my life right now, and am feeling as helpless as a child the idea suddenly makes sense to me.

The idea that I will be facing at least a 2nd Brain MRI this spring after the hospital goofed and gave me an MRI this past week without the required contrast, when I’ve already has a brain MRI last year, along with a breast MRI the counts of MRI's alone seem to be mounting. Looking back I wish I had come up with this idea last year, but I didn't. So this year I am going to.

Going to start counting medical related things that have happened as of the start of this year.
Then I will start to sort out pretty beads, make a necklace that I will be able to add beads to as the appointments and procedures show up.


Tonight I just needed something so badly to cheer me up and although I guess some might consider this wallowing in it all, I think it will make me feel some power over everything, something I desperately need. Tonight my thoughts are bouncing between everything medical going on, and learning that S is likely going to have his shifts changed around.

He has worked his current shift setup for years now, it works for us, and with him also going to school one day a week we make it work though it’s rough. The shift change that has been mentioned to him as likely to happen in the next few weeks. S is trying to say it won't be a big deal, and we will manage. I know we will find a way, but the prospect of the change means that S being a work-aholic will work more, for me it means going from basically 14days a month having full days with him (I know this is spoiled in most eyes but if you spend every day your partner is at work home alone, I assure you those days help sanity), to suddenly having 4days a month with him home for "days off". Sure the schedule would go from working 12hour days to "8hour" days, but S has never worked a true 8hour day, when he is scheduled for 8hours a day, they keep him or he works 9-11hours a day. So even though he is saying it means more time with each other on his work days, it really doesn't likely. Or I guess what I should say is it never has before truly. All I can hope is that my moods are better by the time this happens, as currently I find the idea devastating.

What it means in my head is that everything that needs to be done around the house, the shopping, time with friends, and our families (at LEAST 1 day a month with his family) all has to fit into 4days off a month, 90% of the time on Sundays. Did I mention we hate shopping when stores are busy... like EVERY Sunday? S suggested that perhaps some of these things could be done after he comes home from work; on his "8hour" days... he is being either very optimistic or trying to prevent me from crying, or very forgetful. When he comes home from work, he wants to relax, it’s the end of his day and time to kick-back and forget his work day, and avoid people as he has been around some all day, this also means he does not want to go out once home, he does not want to socialize with others, nor do work around the house, and I totally understand this, but this once again means all that has to happen in a 4day period. It also means that the time we currently spend with my family on occasion will be out the window and it will go back to only his family's planned family dinner's. Don't get me wrong, I LOVE family dinner with his family, it’s something mine has never done, but it’s also nice to see my own parents at times, not just in passing on occasion. Aside from all of the practical issues him working 6days a week, generally 9-11hours a day causes, it also means I am home alone for 6days a week most of the day, when he will get home it will be shower, dinner, relax watching a show, bed. Then the next morning, up, and out the door for 10-12hours until he's back home for shower and dinner.

My issue is mostly no doubt because of my current state of mind, and cause I have become so used to being able to spend ample time with S, good as he is my number one person for any social contact. We have also recently gotten into the pattern of seeing friends now and then when our schedules matched up, and seeing them more then every few months likely will also be out the window.

Just feeling super frustrated, and with all this it’s not like I can even plan to submerge myself in tons of crafts for all the alone time. To do so they would have to figure out the neurological issues that make fine motor skills with my hands anything more than a dream most days.

Oh and I totally forgot till this moment, this schedule change will also mean rather than rotating between days and nights, it will be a rotation between days shift , afternoon shift and night shifts every 2 weeks.  For some reason, afternoon shift manages to make both me and even S a little extra squirrely…. Like we are miserable on that shift even when we are the happiest people in the world.

Thankfully my necklace idea only will require one or two beads at a time. Something I think I can manage.

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