You’re having a tough day today. You’ve already had so many seizures that you’ve lost count. You barely have enough energy to get up and do things, but you’re still trying your hardest. You’ve put up some laundry, made the bed, and most importantly, you called your neurologist to request medicine.
Having seizures is no fun. They mess with your memory and perception of time. They mess with your motivation. They mess with your ability to be the kind of person that you want to be. Please, don’t ever let them stop you from trying to be that person anyway.
I’m not sure, when you start having multiple seizures per day and are getting tingles on your back and feet and left side, why you don’t immediately call the doctor to ask for medication, but you don’t. Ok, that’s not entirely true. I know you cling to the hope that it’ll pass. You reason to yourself that you’re either overheated somehow or are fighting off an infection that you don’t know about. The most treacherous part of regularly having pseudoexacerbations is not that they occur, but that you can never trust your body to let you know when what you’re feeling is not a pseudoexacerbation, but a real relapse. Pseudoexacerbations rob you of your ability to trust yourself. Keep listening to your body anyway.
Today, it’s a beautiful day. It’s mostly sunny and a perfect 68 degrees outside. I know you desperately want to get up and walk the dog and then walk to and from the grocery store to make some kind of delicious dinner in the slow cooker, but your body is telling you that you really shouldn’t try to do that, for your own safety, and you’re angry about it. It sucks! Nobody wants to be trapped indoors by their body.
But remember, it’s not always like this. There will be days when you can do 45 minutes of cardio as well as weightlifting at the gym. Just not today. Today is about exercising self-compassion and resting.
I hear you, raging in the same brain that is writing this letter. I hear you crying and screaming about how this is all terribly unfair, and you’re absolutely right. It is! There is nothing fair about multiple sclerosis. And that’s okay. Life’s not fair. We all do the best we can with the life we’ve got.
Even though I know you want to get up and do a million different things – putting up the dishes, folding the laundry, cooking something for lunch, washing out the bathtub, or any of the other things you keep fixating on, like practicing yoga, playing guitar, or learning to sew… I’m telling you to take a nap. I don’t care that you only woke up 3 hours ago. You’re tired. You’re so tired you can barely keep your eyes open as you type this. Please stop pushing yourself so hard and being so mean to yourself about what you’re unable to accomplish. It’s not helpful. It doesn’t make you feel good, and it doesn’t accomplish anything productive.
Thank you for letting me write this letter. I know it’s weird and embarrassing to be publishing something like this to the public, but maybe someone else needs to hear the same things you do… so I’m saying them.
You don’t have to compare yourself to anyone else. They’re walking their path. You’re walking yours. Just do the best job of taking care of yourself that you can. That’s all anyone who loves you actually wants from you.