Its 4 a.m. and I am wide awake, again. It's a lonely hour, and makes for a long lonely day. I don't know why I stay awake at this hour. I've read about people with autoimmune diseases not being able to sleep at night. It's certainly true of me. I nap daily, sometimes twice daily, and am awake all night. It's weird that one of my medications makes me drowsy, or helps me sleep during the day, but when I take it at midnight or two in the morning it doesn't have the same effect. I don't always sleep after taking the medication in the daytime either. If I take it and get up and go do something, go for a drive or walk, or take photos I can stay awake, but if I am not active it helps me sleep. I take this medication every 6 hours and it is very beneficial for my muscle spasms and the twitching brought on by the autoimmune disease.
It seems that I only have 4 or 5 really good hours in me a day, and it sucks that those are usually from 1 or 2 in the morning till about 6 or 7. A Dr that I see gave me a not about my useful hours. He found it from another client and shared it with me:
MY DOCTOR RECENTLY ASKED ME HOW MANY “USABLE HOURS” I THINK I HAVE IN A DAY.”
“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.”
My DR told me that this is closer to his view of my life. He said that I need to not focus on keeping up with others, but to understand that I am trying to cram too much into too little. This really changed my perspective and helped my contentment. I just wish that my useable hours were at a different time. I miss my wife and I miss my kids. I miss doing things with them and going places with them. It is true that, “the days are long and the years are short.” There are so many things in life that I miss out on because of fatigue, and pain and the sleep that it causes. I miss most soccer games. I miss school activities. I miss church and fun and fellowship with my kids. We've tried to adjust our lives. I try to get the kids up early when there are things we can do. We've learned that when Dad is able to go we just have to get into the car and go.
Sure there are blessings mixed in with this. Our oldest daughter just had a baby. I often go to her house early in the morning and snuggle my Granddaughter so my daughter and her fiancee can get some sleep. These early morning's when I'm wide awake I am often my most creative. I write, I make my videos, pray and watch some news. I try to read, but it's so hard to focus. I think the medications have something to do with that, but it can also be from the autoimmune diseases I fight. I also browse the web looking for jobs I might be able to do, and usually when I do, well, there goes my contentment! Must be able to lift . . . Must be able to stand long hours . . . Must be “this or that or another thing.” Having limitations makes it so frustrating!
How I long on many days to be something I am not. To be well again. To be whole again. To be me! Learning to be content is hard. Learning to enjoy the simple things in life. Learning to be ok where I am, who I am and how I am. Learning to find beauty in the decay. Learning to enjoy the little things like taking a photo, walking in the store with my beloved, sitting on the couch while my teenagers watch some stupid tv show. Contentment is so hard! It's hard because I know that no matter what is going on in my life, or how bad I think it is, I truly know it could be worse. However I also know it could be better; it has been better. I remember talking to a young man with cerebral palsy. He was wheelchair bound and he said, “I can't imagine how hard this must be for you.” How hard for me? I struggled looking at him in his wheelchair and what he couldn't do or never has done and in that moment I didn't understand, but he followed it up, “I've never been able to run, or play basketball or lift and fix things. Your loss must be horrible!”
Loss makes contentment so difficult. Being young and knowing what you once had, or could do has been taken away from you and you'll probably never have it or do it again make contentment joyless. It changes your life and changes who you. Loss is depressing. Pain is depressing. Autoimmune diseases are depressing. Seeing what others do is depressing and watching someone or having someone do things for you that you used to be able to do is depressing. Finding contentment is the cure for much depression!
It's only been in the last 2 or 3 months that I've begun to have some contentment. My wife and my Granddaughter have been the biggest reasons why. With the birth of my Granddaughter it seems that our family has become closer. Our kids at home have been more involved and have wanted to spend time near us, or rather her while we are around. Her birth has brought mother and daughter closer as my wife and our daughters relationship has just blossomed. It's been so wonderful! Speaking of my wife, her support of me and my life has been so huge!
My wife has always been my biggest fan, my biggest supporter and has often literally had my back. She walks with me, and sometimes holds me up. She tells me to stop doing things that she knows will make me feel worse so that I can save my energy for our family and her. She will lift and move things. She will fix things, sometimes just saying, “tell me how to fix it and I'll do it.” Sometimes she will say it can wait or lets ask for help. She has probably willingly given up more than I have lost. She wants me around her, even if it's just sitting near each other. Our only activity is often going to dinner and most of the time I have to leave before everyone is finished and go to the car to recline leaving her to wait alone or with the kids to pay. When we go to a store she knows that I'll probably leave before her for the car. She knows when we take vacations that a lot of the time it will be just her and the kids participating and she is content, or at least appears to be. She gives, even when she doesn't totally understand, out of love for me.
For years I have longed for and dreamed of something. My wife struggled to understand why. Perhaps it was my midlife crisis coming on, but it had bothered her. Daily I would look at ads for a motorcycle or a car. She knew I like mustangs and that I had sold mine for our family. Still, she didn't get the longing to own one, or why we needed another car. It was just another thing to break. Another thing that needed tires. Another thing to drive. Driving, when my health allows, is the one thing I have left. I love to drive. For 17 years I drive as a part of my job. I also commuted to work daily. I probably drove an average of 50,000 miles each year. I missed driving. I willingly gave it up because of back pain, sudden fatigue and my pain medication. It was too risky, and not worth it. Still, I longed for something fun to drive on the days I felt well enough.
There are few things better than a windshield and a long stretch of highway! One day, not too long ago, we were sitting near one another. I saw an ad for a beautiful used mustang. I showed her and said, “What about this one?” To my surprise, no, shock, she said, “lets go look at it!” I about jumped out of my chair. “Are you serious?” She then told me she knows how I had cheerfully given up my previous ones for our family. That I've always wanted one and that she would rather I have a car than a motorcycle. Since I was no longer taking pain medication she knew I could drive more and she asked, “would having one really make you happier?” And, “If we had to for our family be willing to sell it?” When I said yes to those two things she agreed to go look at it with me. I told her I didn't want go look if we weren't prepared to buy it. She encouraged me to go.
It's kind of funny, but totally awesome, that having a mustang and a Granddaughter have seemed to change my life and my attitude. Both have given me something to do everyday. It might seem silly, but when I'm the only person in the suburban running errands is different than when I'm the only person in the mustang running errands. Just hopping in and going to hold my Granddaughter, that 10 minute drive is so fun! My wife even gave me the garage to park in! She understands how I want to keep it clean and in good shape. I still drive the suburban by myself a lot. When the weather is bad, or I'm not feeling that great I take the suburban. When we need to take the dogs somewhere, or the kids, or when I get to pick up my daughter and her baby for an appointment I'm in the suburban, but on a good day . . . On days I'm not able to go spend time taking photos and just need to go get groceries or visit the baby I feel alive!
A baby and a mustang have grown my contentment and made me feel alive and I am truly grateful and have so much more joy, and love for my wife. It's fun to be me again. It feels good and I remember how blessed I am every time I open the garage door or hold the baby. I cherish my wife more and my kids see me smile.
I may never hold down a 9-5, or run on the beach. I may never play hoops or haul a load to the dump. I may never be able to fix things around the house. I may never be able to do so many things, but I can drive! I can drive and I feel alive and IT FEELS GOOD!
