Days like today when there is nothing going on, no real stress, no anniversary dates close, no med mess-ups happened recently, nothing to recover from so you'd think he ought to be having a good day then? Nah, that's not how it happens. Even when there are no outside-of-him forces causing a bad day, there's still a 50/50 chance that he'll have one for some reason which I have yet to figure out. It would be great if I could predict them all, but I'm still hoping for that day to come.
Each day it takes about an hour from the time he wakes up for me to determine whether he's having a good day or bad day. It's 8:30 am and I'm learning that today is a bad day. Obviously "good" and "bad" are subjective terms and if I really wanted to get technical I could make a system where there are grades of good and bad because there really are - there's "bad": he can't balance or carry things, he's tripping, knocking things over, stuttering, choking on food, can't think and so can't get his farm jobs done well and is exhausted from trying - these days make him so frustrated that we just avoid him so he won't yell; then there's "bad" like today: his balance is ok (not great but not falling), his mood is trying to be upbeat, he's able to take in stimuli but here's where it's "bad" for me personally. He can barely take in one stimulus today and it can only be certain kinds and only he knows the definition of that. These are like walking on eggshell days. I can't be near him because that's too much pressure for him to perform and would crack the egg. These days are sad for me because they string together day after day so that I haven't gotten to spend any time with him for days. I get to hear him chuckle, to see his facebook posts, to watch him walk around and out the door but I have to just hold myself and my needs and wants back or I take his little abilities away and it will turn into a worse day for him.
If I haven't said this before.....I am an extrovert and am madly in love with my husband, so having to not interact with him and being a stressor to him is so sad and lonely for me that after days of it I just want to cry...well, I do cry. These are the days that I am sad for what my marriage is and how far away from what I want it to be it is. Ya, I know there are way worse things that could happen, but this is my sadness and I spend a lot of time being grateful but not at this moment. I'm sad because for me, my marriage is a constant monitoring of my energy and connection level. I am a 100% girl. I'm all in or I'm all detached. Trying to be somewhere in the middle is painful, slowly heartbreaking, suffering, like watching a loved one die over the course of weeks, slipping away. You spend day after day losing him then out of nowhere, remission and he's cured, then it's back and he's dying again, then he turns around and it looks promising, then back on death's door. The losing and dying days happen far more often than the remission days but the remission days are so happy that you hope for them and long for them and are sad while you wait. The back and forth of my emotions is exhausting for me. I try not to think about the day that remission days don't come. I try not to think about the day that he's not here at all. I try to use those sadder things to help me be grateful for what I have....but it's just not a marriage struggle that most would think could even exist.
The stress that my being pushed away from him then being pulled toward him then pushed away from him causes is my main stressor. It's the reason I say no to friends/family/events, the reason I feel I can't take any more things onto my plate. The stress of it is what zaps my energy. I wish I could ask someone else how they deal with it? How do you love someone everyday who you lose most of the time with intermittent sprinkles of magic? How do you not detach and not care so as to protect your heart so that you don't hurt the man you love? How do you stay connected and just be in turmoil day after day walking into each morning with the hope for a good day only to be let down about 80% of the time? How much more can I take?
There's a meme that goes around that says something like We don't know how strong we are until being strong is our only choice - It's my only choice. I won't get out of my marriage. I love him. I live for the good days. I respect him, admire him, am committed to him, I won't abandon him. Strong is my only choice but I always feel like I'm at my breaking point, like this is it, this is all I can take, and then I keep going.
I used to think strength was being unbreakable. I was fooling myself because while I thought I was unbreakable, I was slowly breaking myself with food. I've learned that strong is being bendable. Trying to live bendably is still a challenge. I can't run to food for comfort. I don't know what to do to get comfort. Until I figure that out, strength is uncomforted, it's crying, it's not knowing, it's feeling at your breaking point everyday, it's struggling to take care of everyone else when you are a zombie...a walking, physical body contained of numbness.
In the midst of the daily struggle, I logically know that it's good for me to make goals and work to achieve them. They don't mean as much when I accomplish them because none of them is what I want most - my husband - but they will have to be the closest substitute and they keep me occupied anyway.
Here's to "I'm good" answers when you are just barely holding on and you don't have the energy to explain it all and it doesn't matter anyway. Have a "good" day.