Chronically Ill and Tired

There are so many ideas I could share with you about finding quick energy to get things done when you’re tired! Yea, this is not that kind of article. Come down to real life where chronic illness reigns and life’s expectations rain down from the heavens. That’s the world I live in. Most of the people around me just don’t get it, probably never will if they are lucky. So how do I make myself get up when I’m so tired?

Google defines “tired” as being, “in need of sleep or rest; weary.” Weary. This word stands out to me most. For me, tired equals weary. Tired for me is not about shopping too much or spending a day at the beach. Tired for me is not being at work all day, only to come home and cook dinner and wash dishes.

Don’t get me wrong, those are very valid reasons to be tired.  My kind of tired comes from within my body. I’m tired, weary, from the constant battle waring inside me. Chronic Illness is exhausting, and I don’t even have to get out of bed.

I know all the articles we read online and the doctors we sit with have good intentions. They tell us to keep a sleep schedule. Wake and sleep at the same times every day, even weekends. First of all, tell that to my body. She has a mind of her own and when she hurts, she’s not letting me sleep a wink. That’s tired.

Second, I live in a house with three other people of grown size and heavy steps. Oh, and a 5-month-old puppy. Yea, it’s just not realistic in my home. Now, I know if I put my foot down, I could make it happen maybe for three or four days…TOPS!

Here’s the thing, if I decide I want to do something, no matter how tired I am, and I mean it with all my brain, it will get done…if my body allows. Notice I didn’t say, “…with all my heart.” I want to do EVERYTHING I used to be able to do with all my heart. I miss my life pre-chronic illness. But I’ve accepted this life and I’m learning how to live around my sick days. I sometimes have “down” days when I feel good, because being sick all the time is exhausting.

I miss having REAL “me” time that doesn’t consist of sedative medications and black-out masks. I call them down days because they aren’t sick days, I’m not tired, I’m just enjoying the stillness around me and maybe binge a show on Netflix without a Migraine constantly reminding me of how I’m feeling.

I give myself the permission to have a down day without the need to tidy up or run errands. We all get a day off when I’m having a down day and I’m not sick. Somebody has to clean up at some point, though! It’s usually me if I’m still doing well, but if not, my husband and both kids will knock it out at some point in the evening.

Lately, I am getting up with my husband in the mornings and packing his lunch. If I’m extra pushy with myself, I’ll make him breakfast too. I know I don’t have to do these things and he definitely doesn’t ask me to. He’s all about making sure I have a good day so I’m not in bed for hours sick *crosses fingers*.

I want to get up and feel useful. I seem to have more “pep” in my step the rest of the day because I accomplished something I can’t always do. I’ve had better luck with my health over the last couple weeks. I won’t go into the reasons in this article, but I’m very grateful for this new change. If you want to find out why read here.

They key thing here is, first I listen to my body. My body will always say no, but my brain will tell me the truth. I’ll evaluate how I’m feeling before I even sit up in bed and do a body check for pain. I tell my body to shut up, because right now it’s yelling at me that it’s just too tired, close my eyes, and go back to sleep. I clap back, ya’ll!

I tell my wonky body to get up, my muscles aren’t pulling at me and nothing hurts too bad. I can do this, and I know I’ll feel good about myself when it’s all said and done. So, I get up, do my business, and head for the kitchen…usually with a smile on my face. Guess what? I didn’t turn around once to go back to bed.

Now, if my body says, NOPE! Not gonna happen! I just turn my head on my pillow, look to my husband and tell him so. He gets it and he just kisses my forehead and I go back to sleep. Will he eat? Oh yea, he’s a grown man, he’ll make himself something…or get in his car and find lunch if he can afford it. I’ve learned not to beat myself up anymore for the things I can’t do that I used to do with ease. I’m not in that body anymore. I’m in this one and this one needs more care and appreciation.

Because of chronic illness, my children (now in their teens) are very independent. They know how to cook and deep clean. My oldest, Marissa, is driving now, so there’s that! No matter what, though, they don’t complain when I ask them to fend for themselves. They know I’m sick and know that Mom just can’t get up today. If I am up, but they can see the sick all over my facial expressions, they know I’m pushing myself. They’ll try to get me back in bed, but sometimes I just need to move. I just need to push myself to get up and get my own glass of water or put my own dish back in the sink after dinner. I don’t stay up, but I do get up. Even for a change of scenery for a couple minutes.

It’s a decision, guys. That’s all it is. Sometimes I win and sometimes I don’t. I don’t always get up, but as time passes, I’m learning that it’s so worth it. Sometimes I feel like two people. I am on constant alert to convince myself to keep going or to get up and move around. If it was up to my body, my brain wouldn’t exist.

My brain is feisty and she’s learning how to take control of a broken central nervous system and musculoskeletal system that is this body. Decisions are hard to make. When I make the decision not to get up, I don’t beat myself about it. We don’t live by the rules of a typical, healthy person. I have to take care of myself so that I’m around 50 years from now.

I know some of the decisions I make upset other people. Maybe even my husband or my children. Some of those decisions may seem selfish. What I’ve learned in Cognitive Behavioral Therapy (CBT) is this: taking care of myself and making myself a priority is the healthiest act I can do for my future.

There’s a book I was given by a therapist a long time ago when Stephen and I were in couple’s counseling. We were in a bad place and he was not supportive of my chronic illness. He felt I was lazy, faking, and taking advantage of him by staying in bed all the time. After reading this book, I learned many things, but what stood out most was that how he reacts is not my problem. It is his. It took me a while to be okay with that, but I’m glad I figured it out. Here’s a powerful passage from the book, Codependent No More, written by Melody Beattie:

We don’t have to take rejection as a reflection of our self-worth. If somebody who is important (or even someone unimportant) to you rejects you or your choices, you are still real, and you are still worth every bit as much as you would be if you had not been rejected. Feel any feelings that go with rejection; talk about your thoughts; but don’t forfeit your self-esteem to another’s disapproval or rejection of who you are or what you have done. Even if the most important person in your world rejects you, you are still real, and you are still okay. If you have done something inappropriate or you need to solve a problem or change a behavior, then take appropriate steps to take care of yourself. But don’t reject yourself, and don’t give so much power to other people’s rejection of you. It isn’t necessary.

Disease may slow me down, but it isn’t going to shut me down. My body wages war every day, mentally and physically. Tired is inevitable. If anybody has a problem with that, they should talk to someone.