Monday, June 13, 2011

Ritual and Replenishment: A Few Thoughts on Surviving a Hospital Stay

My day is full of rituals.  (I feel like I am documenting them in my My Time-Lapse Life project, which is cool).  I used to make coffee and an egg; now I make a green smoothie and some tea, but the idea is the same.  The hospital is full of rituals, too, that became mine: the 5:30 am rounds of the phlebotomist, the routine vitals report every four hours, the 2am changing of sweat-soaked sheets and pajamas.

In my life, I have spent approximately seven weeks in the hospital; six of them were this past fall.  It is possible to make a home within those four white walls.  Here are a few suggestions, either of things that I did or things that I should have done, to make myself comfortable.  I hope some of them can be helpful to you. 

I know there are fancy hospitals out there; this wasn't one of them.  Picture fifties-era motel in forgotten tourist locale, and you have the image.  Nonetheless, or perhaps because of this, the medical and support staff were extremely flexible and accommodating.  I cannot say enough good things about Mercy Hospital.  Some of the following were their suggestions.

-Private Room
You may not have much influence here, but it's worth trying.  Your doctor, and the staff at her or his office that are making your "reservation" might be able to help.  Ask them.  Call the nurses station before you check in (this is wise as a confirmation anyway; waiting in admitting for several hours is pretty boring), and find out if you are in a private room.  At Mercy, the oncology patients are always in private rooms, and guests are welcome to stay.

-Refrigerator
Ask the hospital if you can have one.  They like to inspect it.  This way you can keep your own food or supplements at hand.  Hospital food is no way to get healthy; I became quite dependent on fish salad and ferments. 

-Pillows, Mattress Pads
The mattresses and pillows in the hospital are made of plastic.  You know why.  Even if you don't have the sweats from your treatment, you will from the bedding.  If your hospital lets you bring your own, I recommend it.   If you are sensitive to the chemical detergents and bleach used in the linens, you can bring those as well (don't forget a laundry bag).  If you are using theirs, ask the staff to put a flannel blanket under the bottom sheet.

-Soap
My skin inflames immediately if I use anti-bacterial detergent soaps.  You will probably remember your toothbrush, but try to remember your soap, too.

-Pure anhydrous lanolin
Hospital air is awful, and the windows cannot be opened due to infection risk.  My skin got terribly dry, especially my lips and around my eyes.  The hospital will happily sell you moisturizers, but they are all full of petroleum and parabens.  Get pure lanolin at the drug store, or have someone bring it to you.

-Ipod, Ipod dock
All hospital rooms have televisions, but I don't like to watch tv.  I find solace in music.  Plus, hospitals can be noisy; the more sanctuary-like you can make your room, the better.

-Clothes
Do you really want to be in a one-size-fits-all johnny the whole time?  Some treatments require it, but if yours doesn't, I recommend bringing your own clothes.  And even if you do need to wear a johnny, you can still have your own shorts and bathrobe.

-Outside food source
Have I mentioned that hospital food is no way to get healthy?  I found a nearby cafe that specialized in local and organic foods, and would maintain a prepaid account in my name.  This way, friends could bring up a meal without having to front the cash, and I didn't need to keep cash in the hospital.

-Bottled water
The hospital will have this, but I recommend ordering several whenever you get anything from the kitchen.  That way you will have them on hand when you need them, and not have to wait for a nurse to get them.

Label all your stuff, and don't keep anything in the hospital that you would be devastated to lose.  My hospital was very safe, but things do get stolen.  You don't need cash or credit cards when you are there; get insurance on your phone.  It can help to tuck stuff into a drawer if you are leaving the room for a procedure.

Okay, so those are some mundane details, but the larger picture I want to paint is that of getting through the day.  I found my time in the hospital to be a gift.  How often in your life do you have no job but to focus on your own well-being?  That said, the whole environment can get a bit tedious.

-Create rituals.  I had several.  My grandmother gave me an electric kettle so that I could make tea (another reason to keep extra water on hand).  A couple times of day I could make a cup of tea and sit down with some blogs or a book.

Every night after dinner I got out of bed, unplugged my iv stand, stuffed the tubing into my bathrobe and strolled the halls in my Crocs (slippers or rubber shoes are great in the hospital - the floors are gross).  While I walked I would recite my mantra to myself - writing a healing mantra is another important ritual that I recommend.  The evening ritual made it easier to go to bed.

While it isn't an idyllic meditation center in Western Mass., the hospital can still be a mindfulness retreat.  There are a million little beeps and buzzers to act as reminders, and there is plenty of time.  I recommend sitting upright or lying flat; the semi-seated position that hospital beds encourage is not good for your spine or your energy.

Of course, I had books and magazines and movies too.  It all helps.

-Make friends with your nurses and support staff.
It isn't their fault you are sick; they are trying to help.  I liked the people I saw every day, and having their encouragement did make a difference.  Plus, when you are soaked in sweat at 2 in the morning or waiting for someone to empty the commode, you don't want to be on the wrong side of the staff.

-Pay attention, if you can.  If you can't, make notes.  If you are engaged in your treatment and ask lots of questions, especially when getting a medication, you will be more informed about what is happening.  Mention everything when the physician's assistant or doctor makes rounds - they don't always know what the nurses are suggesting and they might disagree.

The strange thing about in-patient chemotherapy, at least for me, was that I was usually feeling totally fine until they started medicating me.  My mind would be alert and active, my body would crave exercise.  Instead, I would be tethered to a machine in a tiny room.  Despite all that, I found ways to make my stays bearable and even restorative.

Please feel free to add any additional suggestions.

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