I just came home from a week in the hospital for an exacerbation of my Cystic Fibrosis. Several rounds of oral antibiotics and increased airway clearance/chest physiotherapy weren’t enough to keep me healthy, so I headed back into the hospital for IV Antibiotics.
It’s only been 5 1/2 months since I was last in the hospital, so I wasn’t quite mentally prepared. I knew that I needed it physically, but my doctor surprised me when he said “you need to get here in the morning.”
Queue a flurry of lists, packing, cleaning, and organizing being away for a week. I usually try to see it coming and try to get most of the laundry and cleaning done, but decisions have to get made quickly in some cases.
Like most of my hospitalizations, some things don’t go as planned. There are so many moving parts in a hospital and I understand why and how things may go awry. I get that – at least logically. Emotionally, however, I feel nervous, irritated, scared, and sometimes angry.
… going away for a week and handing control over every aspect of your life to a team of strangers. Twenty-four hours a day, you’re confined to a very small room, which is devoid of most privacy.
… that on any given day, your door swings open dozens of times, often with little to no warning. Other people and circumstances control what and when you can eat and drink, where you are every minute of that day, and what you do (and do not do).
… that you are chronically ill, and on a lot of medications. Suddenly, you have no control over the time you take your medications or do your treatments, or whether taking them at someone else’s defined time might interrupt your ability to eat, bathe, or even use the restroom. You have to make sure that your medications, their doses and schedule remains intact as much as possible, which means that there are times when you have to correct someone, and sometimes even refuse a medication or treatment.
People with Cystic Fibrosis often take a dozen or more medications, and are well-versed in the purpose/type/name/dosage/side effects/interactions of everything we take. Even the most skilled medical professionals don’t know me as well as I know me, so I am a huge proponent of self-advocacy. Sometimes that leads to disagreements, appealing to a higher entity, or making concessions (on either side). It’s scary to have to do that.
… you are sick, in pain, or perhaps one or more of your organs are struggling to work efficiently. You’re subject to a battery of tests, getting blood drawn daily or several times a day, and have someone come into your room every 4 hours to check your temperature, blood pressure, oxygen levels, blood sugar, and heart rate. Any deviation from your norm triggers some action – a new medicine or treatment, more tests, changes to existing medical plans – surprises at the least, and a potential game changer.
Nothing is certain. Information is often lacking or delayed, and often comes at a surprise.
How I Deal With It
I am not what people would call a “good patient”. I ask a lot of questions, which some perceive as questions of one’s skills or knowledge. I get emotional, which some people think makes me weak or immature. I get scared, which I’ve been told a few times that whatever frightens me “is no big deal”.
I learned to “hold it all together” but eventually, the feelings bubble up. While being sick is very “personal”, modern medicine is business; as in, there are protocols and statistics and a cause and effect for every decision made, but those decisions and actions happen to your body – your sick body. It doesn’t matter how freaked out I feel, they’re going to put in that tube or needle. Even if it hurts, I have to take deep breaths and suck it up.
At some point, every interaction feels like potential attack. No matter how irrational that sounds, I think it’s a very human thing to feel.
When you’re physically sick or hurt, exhausted from lack of sleep or treatments or procedures, feeling alone and vulnerable, something has to give. When you “keep it together” during those pokes, prods, scans, examinations, etc., all that fear and discomfort ends up coming out somehow. For me, it’s through emotions.
It’s something that I am trying to work on. But the body and mind can only take so much before something cracks, somewhere. I am just thankful and lucky that my husband and family and immediate care team understand my personality and what both helps and hinders me.
A Different Location, Same Emotions
Now that I am home , I am administering my own IV medications, adding in some new steps to my regimen while maintaining my existing schedule, monitoring my own vital signs – Oxygen, heart rate, blood pressure, temperature and Blood sugar.
It’s scary in a different way now, in that I must follow strict sterile control during my infusions, I have to keep on a tight schedule so that my body doesn’t get toxic levels of my antibiotics, on top of doing my “regular medical” and “regular life” stuff. After the past week, my mind is catching up to my body and I’m a little overwhelmed. However, I know that this, too, shall pass. I have faith.
Until then, I might have to let a few tears fall and scream into my pillow a bit. But don’t worry, it takes a lot more than all of that to bring me down. I’m too stubborn!