Yesterday I did second interviews for our seasonals at the bookstore. There is, like with every job I hold, a time when I have to explain certain things to bosses or to, now, employees.
Since I’ve spent the better part of the last four years either hiding the fact that I was sleeping when I wasn’t doing compulsory things like work and school or being more and more bedridden and unable to do compulsory things like work and school it isn’t a conversation I’ve had more than a few times.
Thankfully, I’m on a good patch and I seem to be able to do more than I have in a while. Hence, all the working.
But, it doesn’t mean I don’t have bad days.
During interviews, I told both applicants, that sometimes I’m quirky to work with, I may have unexpected absences or Doug may tell them that I’m sleeping in the office. It was and is usually easier to just tell people that I have chronic fatigue and hear a little simper than the weirdness that can result from saying it’s because I have PTSD.
A lot of people don’t make the connection that mental illness takes a physical toll.
My doctor back home once explained that I’m exhausted all the time because it’s like I have all these people in a backpack and I carry them around. Like Luke on Degobah, but with more around 100 Yodas than one.
DiD is extra tiring. I genuinely feel multiple things at one time. I can be angry, sad, content, even happy, all at once. Because I have severed aspects of myself, my psyche can have lots of independent thoughts and feelings sometimes at full force. It can look like a very intense mood swing, and it is, but it’s another part of my brain participating rather than my feelings really changing. (Super confusing right?)
I’ve had to say goodbye to more than one job because of simple fatigue. If I worked one day, I couldn’t get out of bed the next. People have told me more than once that I should get on disability, that it will help my financial troubles. But at 24, the legal fight and the fact that I wouldn’t be able to own the business anymore really voids that as an option.
So I keep going. Because what am I supposed to do? Give up? Lay in bed wailing all day? Okay, sometimes I do just lay in bed all day.
But another thing that most people don’t realize about people with PTSD is that our rest isn’t always, restful. Nightmares, night terrors, hyper vigilance, obsessive thoughts, and restless bodies can rob our sleep of it’s usefulness. It isn’t uncommon to feel as if you haven’t slept at all. Well, and sometimes, you don’t sleep.
When I dissociate and can’t move or speak, I often look like I’m sleeping, but I’m not; I just can’t tell my body to do anything.
On top of our minds getting in the way of rest we need our medication can be a big factor. All of my meds have sleepy side effects. Once, when I changed dosages (not medications, even) I was up for 36 hours straight. I can barely be up for eight hours at a time. That felt like a circle of hell.
If you have someone in your life that struggles with chronic fatigue know that when they say they are tired, they really really mean it. Those of us who deal with this know what it means to push our bodies to failure. It isn’t fun.
We have a love hate relationship with naps and don’t think it’s cute when people around us “wish they could sleep that much”. I would gladly trade some hours of sleep for participating in life.
So whether it’s PTSD, an autoimmune disorder, bipolar, cancer, or anything else you can or can’t see; help us out. Wake us up at our bus stop, be nice, and ignore our dark circles.