How to Help Your Myasthenia Gravis Friend During His or Her Hospital Stay
When you first get sick, it’s difficult to keep up with the number of cards, bouquets of flowers, and hospital visits you receive. Every day someone comes to visit you in the hospital, and you run out of space to display all of your gifts.
However, as time goes on, and your hospital visits become the “norm,” visits and gifts start to drop off. When you say that you are being admitted again, people respond with, “How long this time?” Your visitors become the nurses looking after you, and those closest to you know exactly what to pack in your hospital bag.
Recently, quite a few of my fellow Rare Warriors have spent time in the hospital, and they’ve felt rather overwhelmed with the situation. I asked on my Facebook page what friends would love to receive, and what ideas they had for visitors. The post had a great response, and it made me realize that my friends had no idea what to bring with them or if I still wanted visitors.
Here are the ideas that were shared:
Please don’t forget about us! Come visit us in the hospital, send us a message, or give us a quick call. Knowing that people still care and are supporting us through our journey means more than anything.
A cuddly toy or pillow
Hospital life is tough. Sometimes the tears flow freely, or you feel completely overwhelmed. Sometimes all you need is a cuddle or a little bit of home in the form of your favorite pillow to provide comfort.
A soft, beautiful blanket
Hospital is cold. My treatment causes my body temperature to drop. I can have up to seven blankets over me to try to stop the shivering. Hospitals are stark, white places, and having something bright and cheerful can really change the whole mood of the place. My doctor knows where to find me; she just has to look for the pink and unicorns.
A hot water bottle or wheatie bag
Muscle spasms and pain are commonplace when you’re bedbound, have permanent lines inserted, or you’re dealing with the stress of your “normality” being flipped upside down. Hot water bottles and wheatie bags can help to relax your muscles and ease the pain.
Hand sanitizer and hand cream
Rare Warriors have compromised immune systems. The hospital hand sanitizer smells so strong, so I carry dinky little gels and sprays with me. These are quite drying, though, so hand cream goes hand in hand with this (excuse the pun!) and I apply lotion frequently to keep my skin feeling soft and nourished.
I’m not sure if it is the air conditioning, the change in atmosphere, or the treatments, but my lips pay the price. I take a massive jar of Vaseline with me.
Being stuck in bed for up to 24 hours a day means you get bored; your hands don’t know what to do, and there is only so much TV that you can watch!
Books and magazines
I am a complete bookworm! I have been known to stay up until the early hours of the morning to finish a book. I love everything from Harry Potter, to Jodi Picoult, to murder mysteries.
My bag split at the zip during my last admission due to the pairs of pajamas, medications, cellphone chargers, adapters and other items I had stuffed in there. I had to separate my toiletries, so they didn’t leak onto my clothes. I realized mini toiletries such as body wash, body cream, and so on would be handy.
During a hospital visit, you often have a drip inserted or some kind of appendage that makes showering difficult. My admissions are only five days at a time, but many people are in for much longer. Hair gets greasy quickly, and dry shampoo is an absolute lifesaver in making you look and feel better. Alternatively, offer to help wash your friend’s hair in a basin. It will mean more than you can imagine.
Socks and slippers
Considering how cold a hospital can be, socks are an absolute necessity. The best socks that my mum ever got for me had little grips on the bottom so I wouldn’t slip when I got up to go to the bathroom. If my feet are warm, then my body seems to maintain heat a lot better.
Lights in a hospital are on 24 hours a day, and an eye mask can mean you get a proper night’s rest. Sleep helps your body to heal quicker, so hopefully, we can go home sooner.
Facial mist and body spray
The smell of a hospital seems to linger, reminding us that we are stuck inside and not in our own space. A facial mist is very refreshing and helps to cool down your skin should you have any reactions to your treatments or medications. The body spray keeps you smelling fresh and clean; spray a little after a long snooze, or just before visitors pop in.
These are just a few ideas that I have collected from chatting to friends and family. There are so many other ideas, and just anything that will get us to smile (including you!) is so, so appreciated.
Thank you for loving all of us throughout our journey.
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