Managing Long-Term and Frequent Hospital Stays
Long hospital stays may be needed to help someone with neuromyelitis optica spectrum disorder (NMO) deal with a first episode or a relapse. Hospital treatment may last for days or weeks, and this much time away from home can be stressful. You may be uncomfortable and worried about being away from your daily life. These concerns are totally normal.1-3
How to be entertained and more comfortable
Stay connected to the outside world
Spending time with loved ones breaks up the day and distracts from stress. If in-person visits are possible, ask them to bring something you can enjoy together, like a board game or deck of cards. If visits must be virtual, talk to friends and family by phone or video. Depending on your vision, you may even be able to play games or watch movies together online.
Make yourself more comfortable
Hospitals are not known for being comfortable, cozy places. But you can still make your little part of the hospital more pleasant. Bring a comfort item from home, such as a blanket, pillow, or cherished photo. Ditch the hospital gown for your own pajamas and a robe, or a T-shirt and sweatpants.
Bring your own food and toiletries
You may be allowed to keep some labeled food in the hospital. If you are on a special diet or do not want hospital food, ask your family to bring some favorites from home. The hospital will provide basic toiletries, but bringing in your own razor, shampoo, lotion, and other items will help you feel better.
Pass the time
Boredom is a common issue for people staying in hospitals. You can keep yourself entertained by bringing a laptop, a phone, chargers, or hobby supplies. Some activities you can do from your hospital room include:
- Listening to music or podcasts
- Starting a journal about your experience
- Asking a visitor to take you to another part of the hospital or outside for fresh air
Hospitals often have a recreational department. If you ask, the staff will share games, DVDs, and other activities to help you pass the time. You also may ask for a visit from the hospital’s clergy, even if you are not spiritual.
Find extra support
Join online support groups to help reassure yourself you are not alone. These communities may be great resources for learning how others handle hospital stays and other things related to NMO relapses.
Hospitals also have therapists and counselors on staff. It can help to talk to someone about your concerns and frustrations.
Advocate for yourself
Ask plenty of questions about your treatments and tests while in the hospital. Your doctors and nurses should explain medical terms in ways you can understand. A medical student may have more time to sit down and explain things in greater detail.
If you do not understand something or are not happy with your care, speak up. Your healthcare team can make adjustments to make you more comfortable or reassure you. Being open and honest with your concerns allows your team to address them. There may be a simple fix that improves your quality of life.