Monday, October 25th, 2021
I came to the ED knowing I would probably be admitted. This disease is complex, and it’s easier to get treatment as an inpatient where I can be watched more carefully. For those of you who are new here or just need a reminder, I have Myasthenia gravis, a rare autoimmune disease that literally means “grave (or weak) muscles.” So, pretty much, any voluntary muscle in my body is subject to attack: arms, legs, hands, feet, neck, tongue, jaw, etc.
I got up to my room on the neurology unit, and I swear some of these nurses knew my history better than I knew it myself (thank GOD for good nurses)!
I had an IV placed for fluids and my port was accessed for medications. Physical therapy and occupational therapy were in and out trying to figure out the best way to treat my latest flare up. I had many doctors coming in – the hospitalist, neurologist, cardiologist, etc. There was a lot going on, and then suddenly, it was quiet.
Everyone left for me to get some rest, but it was the opposite of restful. I completely broke down. The quiet of a hospital room is a whole new type of quiet. It’s painful and lonely. You want to feel comfort in the fact that you’re finally feeling better and yet it’s so painful being left here while the rest of the world goes on.
Sure, visitors are allowed (during certain hours and only one at a time – thanks COVID), but it just reminds you more of what you’re missing out on – a beautiful fall day, a family dinner, even just the simple tasks that need to be done for the week. And then it goes back to quiet.
Now, I don’t want to say I’m a pro at this, but let’s be honest. After 10+ hospital stays and over 100 outpatient clinic/doctors’ appointments, I’d say I know the drill. I always come prepared – a book, my computer, headphones, my tablet, etc. But these distractions only last so long, and you’re back to silence.
The key is to find comfort in whatever way you can. For me, I like to take walks through the halls so I can at least remember there are other people around. I also confide in my social media community because no one knows better of what you’re going through than someone who has gone through it.
The most important piece of advice I have: Don’t isolate yourself. I’ve been there, done that, and it doesn’t end well. If you can’t get out of your room, invite a friend to visit. If you can’t have visitors, call someone or chat online with your people. If you let it, the quiet of your hospital room will drive you insane.