You’ve been there. I’ve been there. Sometimes you find yourself being checked into the hospital just knowing it’s going to be a long, long time before you see the light of day outside those airtight windows. Extended hospital stays are just part of the package that comes with having a rare disease. It takes time to see all those specialists, get all those tests, and go the trial and error process that is finding the right off-label treatment for your condition.

And boy does it suck.

So how does one keep from going crazy during those endless dreary days behind closed doors? Here are a few tips I’ve personally picked up along the way.


  1. Bring the Right Tools: I have a pre-stocked hospital bag with plenty of knick-knacks to keep me busy, sanitary and sane during my hospital stays. They include things like lysol wipes to give the bed handles, remote, phone, toilet, sink, and call button a good scrub, as well as baby wipes to give yourself a good scrub if you’re not going to be allowed to shower (which now requires a doctor’s prescription). I also bring my laptop, kindle, and even some of those grown-up coloring books to keep me entertained.giphy-150
  2. Get as Normal as Possible: For the most part, it’s a myth that you’ve got to let your butt hang out in that chilly, awful hospital gown. So throw on your favorite pajama pants and make sure you’ve got your favorite bathrobe on hand. Sometimes just being in your own wardrobe can make you feel less like a science project and more like you—just on the worst vacation ever.giphy-153
  3. Make Nice With Your Nurses: While you might feel like screaming at the top of your lungs for pain meds or become incensed by having to press that call button ten times before someone actually comes running, it’s good to try and keep your cool. Remember, depending on what floor you’re on your nurse could be dealing with more than a handful of critical patients. Try to get all your requests out in one visit and remind them when your next dose of medication might be.giphy-154
  4. Walk Whenever Possible: It won’t always be the case, but if you’re able to get out of bed without being a fall risk, ask a nurse or a friend to help you take a short walk around the floor. Walking helps to keep your muscles from turning to jelly, helps to prevent blood clots, and can provide a short mental escape from your confined surroundings.giphy-152
  5. Listen to Music: Do so on your headphones if you have a roommate, but if not—feel free to let your phone speakers play some of your favorite songs. There are also apps that you can download that provide meditation music or sounds to fall asleep to—like gentle rain and running creeks.giphy-151

What’s your best tip for surviving a long hospital stay?

2 thoughts on “Five Tips on Surviving an Extended Hospital Stay”

  1. Erica Thiel says:

    Wow, am I glad about the “needing a shunt riptide to shower not being true at either of my hospitals (a Children’s Hospital for Cardiology stuff and a Neurosurgery floor in Adult hospital for shunt stuff).

    Treating our Nurses nice wins us respect and they will go out of their way to request us in their “assignment ‘, several of mine specifically request me and numerous ones will message and ask if I want them to bring anything when they are coming in to work or if they are going down to the cafeteria.

    Treat others as we wish to be treated, golden rule no matter if crappy situation!
    I’ve even had Nurses when I was stuck in Neuro ICU get special permission to take me out on a special Patient area even when I’ve had external ventricular drains in place.
    Be nice guys!

  2. Erica Thiel says:

    Sorry my 1st comment was supposed to say:I’m glad I don’t need a prescription to take a shower ” at any of my hospitals!

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