>From nurse to patient: The Uninvited Guest
One never plans to be a patient. One takes care of patients.
Throughout a long and varied nursing career, I'd never planed to be on
the other end of the stethoscope. But here I am, and the irony is not
lost on me. I now pour more pills for myself to take in a day than I
used to for 6 patients in the CCU. I'm on a first name basis with the
pharmacist; and I have the longest medication list of any of my primary
care physician's patients. I use the skill and experience that used to
enable me to find veins in the critically ill to enable the home health
care nurses to find veins in me. When I'm admitted to the hospital for
one of my periodic visits, I bring my medications from home and a
medication list. Yes, I'm one of those patients, the one who comes
complete with charts and graphs because we're trying to figure out how
to live with this illness that has entered our lives, this uninvited
Guest that has come to stay.
I have a disorder called transverse myelitis (TM). You might think of
it as " single sclerosis," for it is a demyelinating disorder similar to
multiple sclerosis, only occurring in a single lesion somewhere along
the spinal cord. It is a rare disorder, occurring in a little over one
per million of the population. I suppose if one has to be ill, one
might as well have a rare disorder. It crept upon me slowly, starting
with some numbness of the fingertips, progressing over a period of days
to weeks up the arm, gradually becoming bilateral. As a busy nurse
practitioner, wife, and mother, I didn't pay too much attention to it.
When it persisted, I consulted with a friend neurologist, and as it was
unilateral at the time we thought it might be a brachial plexus injury.
When it became bilateral, and more severe, I was ultimately diagnosed
with TM.(The story of reaching that diagnosis, and the need to become an
educated consumer, I may tell another time.) One spinal tap, two
MRIs,three grams of SoluMedrol later, and I was home to begin to
negotiate what my relationship would be with this new entity in my life.
You may have heard the expression "a person living with AIDS". I now
became a person living with transverse myelitis, and it almost seemed to
be a person itself. There were several facets to it. One was the pain
and sensory changes. These varied on a day-to-day and sometimes hour to
hour basis. The freezing, numb, deep sunburny discomfort came and went,
worse with increased activity, fatigue, stress, and weather changes. I
woke in the morning, almost pain free, just a little drumming in the
hands, and would wonder what the day would be like. Would this new
entity be kind and quiet today, so that I might accomplish a day's work?
Or would it be hateful and mean, driving me to take medications and lie
still, waiting for it to settle?
Another aspect was the fatigue. Stress, heat, lack of sleep, all would
bring on this bone-wrenching tiredness. I had no choice but to become
horizontal, and be grateful that my children were no longer toddlers but
now able to amuse themselves. A morning of driving my children to
swimming lessons, picking up the groceries and fixing lunch now
exhausted me. I applied to myself those things I had used with my
patients. I had taught my cardiac rehab patients pacing of activities.
Now I used those principles myself. I had only so many "coins of
energy" to spend, and I would spend them wisely. Still, some days I
might feel almost normal. What would the uninvited guest bring today?
In many ways, it was like the relationship one has with a new lover.
One is very focused on the moods and changes of the other one. One
learns how to bring out the best in the mutual relationship. One learns
as much as one can about the other. I had no old yearbooks, but medical
texts and the Internet provided information. One might chat up the
other's friends to get a more rounded view; I found an Internet chat
group of fellow TMers. I found myself wanting to tell my friends about
this new entity in my life, thinking it might be as important to them
as it was to me.
Through this, I was always the nurse. Isn’t it interesting, I’d think,
how the nervous system reacts. Anti-convulsants and anti-depressants for
the pain—how fascinating that they work this way. Medication schedules
adjusting to give me the “best” times during family hours. Balancing
fluid intake to maintain blood pressure and avoid incontinence during
social events. Consulting with the neurologist to determine how to treat
this guest that not only was staying, but that refused to settle into a
routine.
The guest invited a guest—sympathotonic orthostatic hypotension. An even
rarer disorder, also in the autoimmune family. (I had a passing thought
about what other members from that family might come, but didn’t stay
there). Now I had no choice, I had to go to the hospital.
Nurses there were busy, short staffed with critically ill patients on
the floor. I wasn’t ill-as long as I was flat, I was cheerful, looked
normal. It was only when I stood up, and my blood pressure became
unobtainable, that I looked as it I belonged. So I stayed in bed, and
mostly saw aides except at pill times. Still, some of the nurses, even
though busy, took a moment to chat, came in my room to chart. I felt
less alone, distracted for a time from the ever-present guest.
In the work-up, it was discovered that I had an unstable C-spine,
requiring immediate surgery. Bear in mind, my hands don’t work well; and
surgery aggravates the condition. I awoke in considerable pain, and a
nurse bustled up. “Now dear, you have this PCA pump. Just press this
button and it’ll give you some pain medicine.” “I’m sorry,” I croaked,
hoarse from the intubation and extubation. “My hands don’t work, I had
this surgery, I can’t press the button.” “Oh,”she said, “well, we’ll
just put it in the other hand.” “No, I’m sorry,” I rasped, barely able
to manage a whisper. “The other hand doesn’t work either.” “Oh,” she
said temporarily defeated. Then she brightened. “Well,” she beamed,
gesturing to the nurses’ station, surrounded by a cachophony of
critical care noises. “You just yell out, and one of us will come push
the button!”
I was soon on the floor, and had IVs out; but the pain and that guest
acting up prevented me from getting enough PO fluids. I was dry, and I
knew it. I told the surgeon I needed an IV, and he agreed. He left to
write for it, then popped his head around the corner. “What do they
usually give you, and how fast?”
That night the IV was feeling funny, and I asked the nurse to check
it. “I don’t know what you’re worried about; you don’t need the IV
anyway. “ It was too much. The uninvited guest had been niggling and
naggling all this time; and I’d rarely given in..but this was too much.
I started to cry.
Another nurse came in to look at the IV. She flipped on the light, took
in the tears leaking from my ears and sniffed, “I don’t know what you’re
so upset about. You have nothing to cry about!” Nothing to cry about!
The Guest laughed. I cried.
I escaped the mercies of that pair, and eventually went home. I was
encased in that medieval torture instrument, the cervical collar. The
home care nurses were nice, professional, generally young. We worked
together well. The one who stands out, though, was a little older. She
plumped my pillow, got a cloth for my brow, opened the collar to cool my
neck, gently touched my shoulder with one hand while taking my pulse
with the other. It didn’t take any longer. She did all the high tech
things the others did, with a practiced hand. She also remembered high
touch, the non-spoken but essential part of nursing.
As a nurse, I was confident of my ability to provide concern and
empathy for individuals with chronic illnesses. Now, as a patient, I
realize how much more there is to understand.