Went and took a few photos yesterday morning before we headed to Santa Maria to look for dresses for the girls for an upcoming wedding. After a quick lunch we began to go through Macy's. During lunch suddenly my energy dropped, my pain kicked in and Cynthia could see in my eyes I wasn't going to make it. As we walked through Macy's she told me to go to the car. I remember waking up when they got in at the Mall, got out at Costco, got in to head home and I remember waking at home around 6:30 p.m.
I'm writing this to shout out to my wife. She works tirelessly throughout the week both at home and out of the home. She has had to learn to improvise, adapt and overcome my sudden changes in energy and pain. She's learned to tell me, "it's ok!" and, "I've got this! Go lay down."
Dealing with chronic pain and fatigue, failed back surgeries, spondylosis, fibromyalgia, epidural fibrosis, stenosis, stiff-person disease and more is hard on me, but it is equally or more on my family. When Dad can do something we try. We I can't my wife is a sudden single Mom. We make plans that are unfulfilled and make decisions that get changed. It's tough. It's traumatic and it's heartbreaking at times. Still, she encourages me and drives me.
I write this to hopefully encourage those who are going through similar things or worse. If you are, DON'T GIVE UP! Keep doing what you can, when you can and while you can. Learn to say no. It's ok.
If you are the caregiver. Thank you. Keep on. Even though it sucks so many days. Take time for you. Its ok. Your health, mental, physical, social and spiritual health help us and is needed for us. Leave us at times and take some, "Me time." Do it for both of us. Do it for all of us. If you go down we all go down. Even though it feels selfish you must!
To my wife: I LOVE YOU doesn't seem enough, but sometimes those 3 words are all I have, and I give it to you, ALL THAT I HAVE.
I love you!
Remember this:
One of my Drs just shared this with me:
MY DOCTOR RECENTLY ASKED ME HOW MANY “USABLE HOURS” I HAVE IN A DAY.” Below that, in smaller text,
“She told me that a healthy person has, on average, around 10 “usable hours” a day. These hours can be spent going to work, getting errands done, and fulfilling other responsibilities. We realized that, on a good day, I have around 4 “usable hours” with lots of rest in between.
—
This really hit home for me because, despite knowing better, I still try to keep up with healthy people. I try to squeeze their 10 hours of socially-acceptable responsibilities into my 4 hours each day. The equivalent would be if a healthy person tried to fit 25 hours of responsibilities into their 10 usable hours a day. It also made me understand why I felt like time was slipping me by so quickly; because a healthy person has approximately 6 more usable hours a day than me, 42 more a week, and 186 more a month.”
He told me that this is closer to his view of my life
