When you have an NMO attack or get your Rituxan treatment, you are pumped silly with 1gram of steroids a day. That may not seem like a lot but to put it in perspective, the average prednisone dosage is 10mg. NMO and other autoimmune disease survivors are getting 10 times the average prescription. Not to mention, you are on a taper for possibly months after your attack. A taper is when your doctor slowly lowers the dosage of steroids, giving your body time to adjust and you time to figure out if your attack is ending or the steroids are simply treating symptoms.
Steroids, like you may already know, lead to TERRIBLE insomnia and anxiety. After my first attack, I was on steroids for three months, and for three months I could not sleep. Sometimes, I would go 48 hours with only 2 or 3 hours of sleep. It can be really frustrating and downright annoying. Here are some tricks I learned to make insomnia more bearable.
1. Binge a Show You've Already Watched
When you have an attack you're already scared because of the uncertainty it brings. Will I be able to walk again? Will I regain my vision? Will the spasms stop? When will this happen again? Studies show that rewatching your favorite movies and TV shows bring a sense of nostalgia because the feelings you had when first watch it are embedded in you forever. My friend calls The Princess Bride her "chicken noodle soup movie" because she is comforted thinking about the good times watching it when growing up. Don't believe me? Look it up! My own personal theory is that rewatching shows or movies you have already seen bring a sense of comfort because you already know the ending. When your life is unpredictable, stressful, and out of control, it is nice knowing that some things are constant and you know the outcomes. When I was sick, I rewatched The Office because the show makes me laugh and I felt comfort knowing what was the ending of each episode.
2. Take a Benadryl (or two!)
When you have an autoimmune disease you shouldn't take any medications or homeopathic remedies that stimulate your immune system. This means that taking a melatonin to get some shut eye is out of the question. I would take a Benadryl or two to help me get drowsy and fall asleep. This is also a good option for those who have seasonal allergies, just take them at night and you're killing two birds with one stone. Also, check with your healthcare professional before doing this to make sure it is the right option for you.
3. Lay Next to a Loved One
This one may seem a little bit creepy but I swear it is helpful and soothing. When sleep deprived, sad because of an attack, and on medication that causes anxiety, you can feel so alone and scared. To calm myself down I would lay down in bed next to my mom to remind myself that I was not alone. The steady breathing of someone sleeping is nice to meditate to and to synchronize your own breathing to. My boyfriend took me to one of my treatments and afterwards, he fell asleep watching TV while I stayed up with anxiety and insomnia. I curled up next to him, listened to his steady breath, and at one point he subconsciously put his arm around me in such a protective manor that was really soothing. Eventually, I calmed down and was able to fall asleep.
4. Find a Hobby or Passion!
When battling severe insomnia, I find something that I am passionate about and stick to it. After my first attack, I spent countless nights awake and researching my disease, organizations that funded research, and the AIP diet. While on break from my education, I felt like I was still learning but also taking charge of my life. I also would paint pictures or experiment with all sorts of cooking (AIP and non-AIP). Find a way to make yourself feel useful and to keep your mind off of all the negativity that can so easily creep in.
5. Don't Force Yourself to Sleep
One of the biggest things I found to actually inhibit my sleeping, was forcing myself to sleep. Laying in bed, staring at the ceiling, and feeling absolutely wide awake was one of the most frustrating feelings. In fact, laying in bed awake or playing on your phone is super unhealthy (even though I still do this all the time). If you are not on the brink of sleep you should not be laying in bed because it sets a pattern that it is okay to be awake in bed. Your body is constantly falling into habits, consciously or unconsciously. And a good habit is to only use your bed for sleeping. If your body gets used to doing other things in bed like watching TV or doing homework, it will not recognize it as a place of rest and in turn will make it more difficult to fall asleep. Also, don't torture yourself by forcing yourself to sleep, when on steroids, it will come when it comes.
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