• Megan Rose

But We Try Too Hard and It's a Waste of My Time

Sometimes it's nice to accept your problems and stop trying to pretend everything is fine.

For me, everything is not fine. Years after being diagnosed with bipolar disorder, a seizure disorder, and narcolepsy, I'm experiencing new symptoms that I believe to be caused by an autonomic nervous system disorder. I spend most days feeling sick, nauseated, lightheaded, shaking, weak, with a headache and extreme fatigue. Last night I slept from 2:30 am to 3:00 pm. And I was still tired all day.

Luckily, I was also feeling better than usual today and was able to get some things done - like this blog post. It's been a week since I posted anything on social media or updated my website, I haven't written any new essays or short stories, and I've been in bed or on the couch watching tv feeling like a failure and an oversensitive baby who can't handle doing the bare minimum of what's required to live.

I went to the doctor to talk about the disorder I think I may have and I don't think he knew what it was. I came home crying and wondering if it was just anxiety, like he had suggested. I then spent the next week literally fretting over every little thing - I desperately wanted to feel so sick that people could clearly see it. I wanted to vomit or faint (like some people with this disorder do) just so I could prove to others and to myself that I was really sick.

I decided not to get tested for this disorder. I'm tired of going to doctors and trying to convince them something is wrong with me and then going through multiple rounds of testing. Even if I am tested for it, I don't know if I would wind up being diagnosed with this disorder, because there are so many things it could be. I don't feel like finding out I'm "perfectly fine" from doctors who think I'm just exaggerating or using what they might consider slight inconveniences as excuses to not have to do anything.

I know I'm not well. I don't care what it is. As much as I would love to have a diagnosis so I could prove to people (and myself) I really am sick, I can't go through the process of being diagnosed again. There isn't much treatment for the disorder, so there's not much point in getting it diagnosed.

I'm going to apply for disability, and I am ashamed and sad about that. I was always very hardworking and I always enjoyed creating things, running things, and working, but I haven't been able to keep up the momentum I had in high school since I graduated. After being diagnosed with bipolar disorder my life was changed forever. Then there were more diagnoses, but for some reason I kept thinking that some day I would just be all better.

I don't know why I thought that. These things don't just go away. My new symptoms have just been getting worse. I'm sad that I no longer have the energy to bake - I was going to start a small business with my sister. We spent the week before Thanksgiving baking pumpkin rolls - we had 20 orders. I didn't fulfill all of them (and none of them were filled on time) because I wasn't able to finish baking them due to my own health issues, and my sister got busy. It was so nice, though, to do something that people were interested in. I got great feedback from the customers, and I knew the pumpkin rolls were really good. I had a ton of really creative ideas for what we could bake in the future, but after not even fulfilling all of the pumpkin roll orders I decided I wouldn't be able to continue.

The one thing I was able to do for a few years was run my nonprofit children's theatre program, but I've had to put that on hold for right now (besides the fact that we can't meet in person - I could be running virtual programs). I intend to start up again in September but only with the option that my mom could take over if I don't feel well enough. At one point I was at the studio I rented (which I no longer have) every day teaching, making sets and costumes, directing, and working with lots of students. I'm sad that I can't do that anymore. It was truly such a joyous time in my life, and of course I intend on running a program in the fall but it won't be the same.

I spend my days sitting on the couch, watching tv, or writing if I feel decent. I take my dog out for walks and try to get some little errands done during the day. I love to bake and cook, but I don't see myself being able to do that too much in the future with how I'm feeling now. I cooked dinner twice this week but they were very easy recipes that didn't take very long.

It's possible things will get better and I really won't feel like this forever, but the more I think about it the more I convince myself this is not going away.

My mom wants me to use a wheelchair when I'm running my theatre programs in the future, and I do think it would make a big difference in how I feel. I think I'd be more able to get through the program, have more energy, and just be more likely to show up in general. But I feel incredibly guilty using one, because I know I don't technically need it. I don't want to be disrespectful to those who really do need a wheelchair and I don't want to be drawing attention to my illness or getting sympathy from people when I know I don't technically need it to function. I have a while to decide what I want to do, and maybe things will be different in September, but I don't know if I'll ever be comfortable using one, and if I don't, I don't know how capable I will be of teaching. The more I think about it, the more I think I'm being dramatic or attention-seeking, but the more I think about teaching, the more I realize it's going to take all of my energy just to work with the kids for an hour.

I'm going to apply for disability, but I'm going to feel guilty the whole time because I feel as though I shouldn't have to. I'm much healthier than a lot of people who aren't even on disability and are working regular jobs, and I can't stand the idea of 'taking the easy way out.' I also know there's not really a realistic way for me to get a job when I sleep 13 random hours a day and spend the rest of the time on the couch either feeling incredibly sick or feeling just well enough to open my computer and write a blog post or part of a short story.

I had to write this blog post in two parts. I have been on the computer for 10 minutes and I'm ready to put it away and lay down because I feel shaky and tired. I don't see how I could work with these issues, but I also want to fight my symptoms and just do things anyway. Sometimes I get up and do something and I don't feel too bad and I think maybe there's nothing wrong with me. Maybe I'm just tired or have anxiety or am just lazy. Then I spend a whole day in bed shaking, thinking I'm going to throw up, and I realize I am not okay. The next day, though, if I feel better I convince myself I was just being dramatic and there's nothing really wrong with me.

It's exhausting convincing myself that I'm sick, then convincing myself that I'm not, then going back and forth between the two on a constant basis. I know I would feel better if I had a diagnosis but I also know I'll be crushed if I'm not diagnosed with what I think I have, because that will mean either there's nothing wrong with me or there's something else wrong with me that I have to figure out.

That's why I'm trying to just accept it when I don't feel well and do what I can to feel better, and accept it when I do feel well and do what I can to make me feel productive. It's very difficult for me and it's amazing how quickly my mind can change from thinking I'm sick to thinking I'm fine.

I'm trying to accept that I am not well, that I will most likely not get much better, and that I have extreme limitations right now, and I'm trying not to harp on the reason why. There are better uses of my time than worrying about whether these symptoms are imaginary or not, and I know in my heart that they really aren't. I just can't help but think there are people out there suffering more who are stronger and working harder than me who are somehow making it work.

I feel tired and sick after writing this. I'll have to come back and read through it again before I post it, so it will have taken me three different sit-downs with the computer to get this published.

Acceptance is hard, especially when you're not exactly sure what you're trying to accept. I just want to be comfortable with my choices, not feel guilty about anything, and do my best to make the best out of what I've been given. But I can only do that if I accept that I'm sick and that I have limitations. I'm working on it, but it's taking longer than I expected.

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