Wednesday, April 3, 2019

Day of Truth is Finally Here

Today is the day.

After 18 months of waiting and two denials, I get to tell a judge why I can't work. It's been a long wait, filled with lots of other challenges (ones for a future post), besides my own.

My biggest deficit... low endurance and fatigue. Basically, the more thinking or physical effort involved in the task, the quicker my fatigue rears its ugly head.

Maybe a look into my life will help show you what I mean. 

Typically, on weekdays, I get up at 6AM to get the boys ready for school (breakfast and making lunches). After taking them to school, I make myself breakfast, read a devotional plan in my YouVersion Bible app, pray and journal my thoughts/feelings. Next, I work on my never ending list of little things I need to do. Looking at it now, I see "call XYZ", "birthday card," "donation bag," "$ for yearbook," "cancel appt," "order XYZ clothing," "library." Before, I added stuff like "breakfast, clean up dishes, shower," to the list and had a sheet for each day, so I'd feel accomplished once I crossed said task off the list (as per a suggestion from my speech therapist). Now, it's more of a general list, but I have to say, when I add whatever to my list, it does something magical to inspire me to get that task done.

Anyway.... back to my daily routine: I might go for a walk, or do a low impact exercise DVD, depending on my day. If I have to go out for any reason, I won't do the DVD or walk less time as to save my energy for the task. Afterward, I take a shower and if I'm going out or not, determines whether I do my hair/face. Once 11:30 rolls around, I make myself lunch, then rest with a few to-do's mixed in until I have to pick up the boys from school at 2:30. At 4:30, I start making dinners for me and the boys. It's always simple... little prep... little dishes to clean afterward.

In between these times of "doing stuff," I rest. Either I'm reading, watching something on Netflix, or playing a non-stressful game on my phone. At 6PM, my husband comes home from work and makes his dinner, then helps my youngest with his homework as I don't know how to do the math problems anymore and (honestly) post-stroke, my patience is thin. And by that time, I'm close to being physically spent anyway. By 8PM, the boys are finished with screen time and start showers/teeth brushing to be in bed by 9. I'm in bed by 9 myself and read to get sleepy, just to start the cycle all over again the next day. If I stop and think about the effort needed to accomplish my daily tasks, I get overwhelmed and fatigue sets in. I have to reward myself to push through... something I want to watch, read, or do, but it'll come at a price.

A price.

Even rereading this... I sound so pathetic. I don't want to be. And don't get me wrong, I'm not telling you this for your sympathy. Nothing grates more on my nerves than hearing someone complain. If you're thinking that's what I'm doing, you're missing the point. What I want for you is to appreciate your LIFE, your HEALTH, your ENERGY. Don't live life to the full now, live it with the future in mind. Do you ultimately want quality of life or quantity? I've made, for the most part, food choices to keep me healthy now with a few sugary exceptions (maybe too many). But isn't that what we hear all the time in the media, to live for the moment? Just please, keep the future in mind because future-you will appreciate your healthy choices now.

The day I met with my lawyer to discuss what would happen at my hearing, it was a 1-1/2 hour meeting. Afterward, I met my husband for lunch since he works close by, and then left to pick up the boys from school. Sitting in the parking lot waiting for them to get out of school, my exhaustion overwhelmed me (like end of the day exhausted), but I had to pick them up as I'm in a carpool. A full car (6 kids) and with them all talking... just the noise is draining. By the time I got home, I fell into bed and took a 30 minute nap. When I woke up, I didn't have the energy to make dinner for the boys (mine just needed to be heated up). I was done for the night. Before my stroke, I could do all that EASY and still have energy to write in the evening, getting to bed at 11PM.

To compensate, I order online when I can because getting ready, getting in the car, going to the store, finding it, buying it, taking it home... all takes energy... I only have so much each day and once it's spent, it's gone. I save my energy for the important things in my life. That in itself takes a lot of planning and pacing. I avoid crowds as they take energy from me. I avoid making decisions on the fly. I go to church on Saturday so I can pick out my seat as I have a wonky foot that doesn't work well. I try to regularly hang out with friends from high school. If we can meet at someone's house, I'm all for it. One time, we met downtown at a restaurant... let me say parking was a nightmare for me and I hadn't planned for that. Typically, I carpool with a friend who lives close to me so she can make those quick decisions and do the planning.

In a nutshell, I avoid stress at all costs. 

That's why I barely blog, why I'm not on Facebook (accept when people tag me). Maybe I avoid Facebook so I can stay in my little bubble of avoidance. It's hard seeing people living their lives and not wanting to join in. Hard. Even writing this is stressful to a degree and later, I'll pay the price for investing my energy. It all boils down to making sure the price is worth it... trading a meaningful conversation with my children for a clean floor, for example.

But... avoiding the hard in my life isn't going to help in the long run either. I need to force myself to get out of the house, to pace, to do, to go, to live. 

The old me would thrive on the stress, try to squeeze in as much as she could and over commit. Write until late in the evening, imagine her characters in impossible situations and loving the puzzle of getting them out of that. The old me.

The other day, I got a inspired to work on my memoir. I quickly went to find the manuscript I'd worked on a year ago, just to realize I couldn't find it. I frantically searched and searched to no avail.

It was gone! Poof!

And just the act of searching took the wind out of my sails. I was frustrated and angry and exhausted. I started to question. Did God really want me to write my memoir? I know I will need help throughout the entire process, but honestly... to lose my manuscript? I'd written 9K words and those words took energy to write, energy that was precious to me.

When talking my frustration over with my husband, I read a journal entry to him, one I'd written before my stroke. It was a raw look inside myself, admitting the realities of where I was emotionally and asking questions I didn't know the answers to. And then a glimpse of now, three years later, going through what I've gone through, I was able to answer such questions. The answers weren't what I'd wanted back then, but what I needed. I sobbed reading it. He looked at me and said, "that needs to be the first chapter of your book." I blinked at him. Seriously? I've never been that vulnerable. Showing the real me. The ugly broken pieces of me. I struggled just to read it to him.

I felt God's nudge. Yes. That's what He wants. My manuscript before didn't show that. That manuscript was safe. Maybe I was supposed to lose that manuscript. That it was part of the plan, part of my story.

So.... for now, I'm journalling with the hopes that it will become my memoir. Good news is that it'll be using the energy I'd already allotted for the day anyway. Win-win.

So with all that being said, I'd love your prayers and well wishes as I go to this hearing. I know God has got my back. I really want the ruling to be in my favor. Unfortunately, I will have to wait 60 days until we know for sure. The good news is I'll be paid backpay 6 months after my stroke (June 2016 - present) and it should be tax-free. Either way, I want the truth to come out, to prevail. I want to win. But whatever happens, God is with me, and we'll cross that bridge together when I get there.

In the end, it's all supposed to be my story.

The good, the bad and the broken.

Thank you for reading.

Hugs to you all!