Naps are My Life

Fatigue. In the past, I’ve pushed and pushed myself....and I don’t mean just working long hours. As an example, I’ve worked a full day in the office, drove to the airport, hopped a plane from New Jersey to Las Vegas (5+ hours), landed and caught a cab directly to the convention center, spent another 5 hours setting up our booth (putting together racking, unloading pallets, unpacking boxes, creating displays), then finally eating and going to the hotel to check in and fall asleep (4 am which is 7 am at home). I’ve always felt like it was ok to work so hard because “the weekends are for sleeping.” In many cases I would throw out my back and be in bed for literally a week before I was able to walk again. There was a lot of suffering for the sake of my career and it seemed as if the more I did, the more I was expected to do. I used to have what I called “coma days” where I would just go to bed and take pain relievers and try to recover. It rarely worked.

Looking back at my Facebook posts over the years I am struck by how many posts are about me flying somewhere, leaving home again for a weeklong trip or just how tired I am. Day after day, year after year of this. How stupid was I? Even when I had my first stroke, my main goal was to get back to work. Talking to my doctor, I asked how soon I could return to work and his response was, “Do you have to?” I thought this was odd because of course, I had to! I wasn’t listening. I just didn’t realize what he was saying. Now I know that most people who have a stroke will have another. And another. And another. The numbers were against me. And so I had another stroke. Of course, I did. I felt as if I had recovered and went right back to the unhealthy behavior that brought me my first stroke. I felt it was required of me. If I could do it over again I would have changed jobs and found something less stressful, less physical, just less all around.

I never recognized the fatigue that I felt after my first stroke. I didn’t know it was a thing. I clearly remember telling people, “I feel so much better but I’m tired all the time.” No one explained fatigue to me, not even my therapists. After my second stroke, I found a few support groups on Facebook and immediately saw the same question pop up almost on a daily basis. “Is anyone else tired all the time?”

When you have a stroke, you are going to be fatigued. Tired all the time. Some days I wake up, watch the news and then take a nap. Watch a movie, take a nap. Get up and make a sandwich for lunch and take a nap. Naps are my life, naps are my friend. Naps help me go on.

I’m sure you’re thinking, “Yes, I like naps, too.” It’s the response I get all the time from non-disabled people but you still don’t understand. You just don’t get it. You can’t unless it’s happened to you. This isn’t working hard and then being tired. You never feel like you have done anything to be this tired. But think about it for a moment. My brain was injured. Part of my brain is dead and gone. So, when something is injured you give it a break. Your ankle hurts, you limp. Your back hurts, you baby it and try not to bend or reach for things.

You can’t give your brain a rest. Ever. Everything you do requires brain power. Want to read a book? Your brain is working. Want to watch a movie? Your brain is working. Drive across town? Your brain again. Want to breathe today? Guess what, your brain is in control of that, too.

And so, whatever I do, even if it’s just taking a shower, my brain is getting a workout. I need a nap. I always need a nap.

When I had my first stroke I went back to work, not realizing that the tired feeling was never going to go away. No one tells you this, it never goes away. I firmly believe that you don’t get better from neurofatigue, you just learn to deal with it. I plan my days carefully. If I’m going to take a shower and get dressed, I plan a nap after all that hard work. Today my plan was to pay some bills and I have one e-mail to write but now I’m blogging so I will do all that tomorrow. Today I’m blogging. What used to be so simple and effortless now wipes me out. That’s just how it is. Do I want pity? No. I just want people to understand. So when I post on line that I colored in a picture, people understand that I am trying. I am pushing to do something different, something new and it is hard. You can’t judge my life by what I did in the past because that lady is gone. I’m so happy if I make a pretty wreath or feed the birds because what I used to be able to do easily now takes a tremendous effort and will put me out of commission for the rest of the day. I have lost who I once was. She’s gone and has been replaced by this lady who is tired all the time and is angry at herself for not doing more. We are our harshest critics and I, like so many others, defined myself by my work, my abilities and my accomplishments. I can’t work anymore. No one will pay me to nap all day. (Wouldn’t that be lovely?) My abilities and accomplishments have taken a hit. I’m thrilled if I made the bed. Most people would just roll their eyes at that. I know, I’m lazy. But I’m not. I’m just tired. I just need a nap.

I’m so thankful for the support groups. Without them I would think I was going crazy because even though so many have had a stroke, still no one understands what it entails. I didn’t understand even though I had one! I’m learning to be kind to myself and accept me for me. But it’s hard. Especially knowing that people still look at me as being normal but what I’m thinking and feeling is so scattered and foreign. One moment I’m crying and the next I’m just so angry I can’t take myself. I give myself a lot of timeouts. I need to be quiet, peaceful and just breathe. Meditation is so important and helpful because I need to give my brain a break and try to quiet the insanity that is going on in my head.

I wish people could understand but seriously, if it hasn’t happened to you, you just won’t. My stroke warrior friends are nodding and thinking, “She’s so right.”

I wish I was wrong.

I wish I was blissfully ignorant.

I'm not and so I will go on trying to explain to anyone who will listen. Stroke Awareness is so important to me because most of all, I wish I had a clue before this happened to me.