Let’s face it… life is exhausting. For many of us in the chronically ill community, just getting out of bed on a daily basis can be tiring. Then (if you’re lucky), you add on a family, chores, possibly a hobby, and a full-time job. I got tired just writing that. I do not have a family of my own, and frankly do not understand how people that do can keep up with them. So I’m just going to talk a little about what I do know, which is (arguably just as tiring) the single, working life as a full-time chronically ill patient.
I am tired, y’all. All day, every day. Most days I snooze for a full hour after my alarm goes off because I simply cannot get my ass out of bed. Just the thought of the day ahead of me makes me want to crawl back under a blanket and cuddle one of my dogs for the foreseeable future. But alas, I cannot. I work full time, and in addition to my 40+ hours a week I put in at work, I also run Girls With Guts, and train twice a week for roller derby. How in the world do I do it? Dude, sometimes, I have no idea.
Here is what I do know about having a very full schedule and a very sick body: many times it is mind over matter. If I let myself sit at home crawled under that blanket every time I felt a little off, or a little sick, I would literally never get out of bed. I think many times us sick people are so tired of fighting every day, that on some days where things are generally pretty ok, we find reasons to give up. I think this is totally ok, when it’s a weekend or a holiday or something, but I cannot justify missing work because I just don’t feel well. Most days I just suck it up.
Here are a few things I focus on to help manage my fatigue.
Sleep. Let’s talk bed time. What time do you go to bed? I, my friends, go to bed at about 8:30 p.m. every night. No that’s not a typo; I am in my bed taking melatonin at 8:30 p.m. Do I miss out on a lot of things? I sure do, but I also know that I cannot function day after day if I go to bed late every night. Sure, it makes me feel like a super old lady, but this is one of the only things that I have found that actually helps me make it through the day.
Caffeine. You can tell me all day long how bad caffeine is for me but chances are I’m not going to listen. I don’t feel a direct connection between caffeine and my alertness but I drink it anyway, hoping it will keep me from taking naps at my desk. I generally drink a cup of coffee when I get to work because my commute is tiring. Then I eat something sweet around lunch time, like fruit or candy or something with sugar, because sitting at my desk is tiring. Around 2 p.m. I’m drinking more coffee or a soda because being alive is tiring. I don’t really recommend this method, but from my talks with my IBD and MS friends, I’m not alone on the need for caffeine throughout the day.
Exercise. I know, I know exercise makes you tired. It makes me tired too. In fact, after I have derby practice I generally come home and rest or nap on the couch. Exercise in general is tiring. BUT I have found that the more I exercise the more overall energy I have. Exercise does NOT give me energy directly after I work out, but maybe the next day I’m a little more awake. When I started derby, I went to practice and went home and slept for five hours. Now that I have been doing derby for a few weeks, I don’t need that nap after derby, but I like to take it. I’ve found my stamina is better. Is it as good as “normies?” Nope. But I can tell it is improving.
I am not the epitome of health and vitality. I like to nap just as much as the next person, but as I sit here drinking my afternoon Mountain Dew, I know that I do what I can to partake in the activities I want to partake in and sometimes that means missing other things. In my life there are wants and needs when it comes to the usage of my energy. I need to go to work. I need to grocery shop. I need to sleep a ton. I want to stay out late with my friends, I want to do derby, and I want to work out every day after work. Of those “wants,” I can accomplish one and it is my choice that that one thing is derby. As you probably know, fatigue and illness generally means choices. Choices that other people don’t have to make. While my friends know that I go to sleep early, and that I’m probably not going out Friday night, they also know that I do what I can so that way when I do go do something I am awake enough to enjoy it.
So much of living with fatigue is giving into it. I don’t mean laying around in bed all day. Instead, I mean just acknowledging that it’s there and that it’s apart of your life. You can push push push all you want but more times than not it’s going to make you sick and worse than when you started. Giving into fatigue just means making better choices for your body and your overall health and wellness. Don’t be afraid to give in a little. Go to sleep early. Miss a few nights at the bar. Don’t beat yourself up for not working out seven days a week. Find the happy medium in your life between thriving and resting so you can enjoy it.
Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.