In the spirit of getting back into a blogging groove, I decided to answer the Queen of Optimism’s prompt for the next Patient for a Moment carnival.
With the holidays and gifts on my mind, (and various illnesses and symptoms in my thoughts a lot lately, too) it is also a good time to consider the various “must-haves” and necessities for life with chronic illness. We’re supposed to look at concrete items, not more abstract concepts like love, support, empathy, etc—though of course everyone could use those, too, healthy or not.
If you’ve read Life Disrupted then you know I have a whole section of surviving hospitalizations and you won’t be surprised at my number-one must have:
I very rarely leave home without it. Okay, on maternity leave I stuck with just the diaper bag, but typically I have my laptop with me wherever I go. I’ve had it with me as a patient in the ICU, I bring it to every doctor appointment, and yes, I did bring it to the hospital for what we fondly call The Longest Labor Ever. (Okay not really but seriously, it was pretty close.) It is always the first item I pack in my hospital bag, before the medications, the toothbrush, or the contact lens case.
Being sick involves so much waiting around, and with free wifi in most hospitals and doctor’s offices these days, I always want it with me in case I can catch a few minutes’ work.
As a writer, editor, and professor, my computer is where my life’s work largely happens. But beyond work, whether I am home sick or in the hospital, my computer is my connection to my IRL friends, social networks, and the outside world in general. It brings the world to me when I cannot participate in daily life. My current Mac is four years old and makes an incredibly sad noise when I open it due to a broken CD drive, plus the letters have worn off some of a lot of keys, but I am still smitten with it.
My iPhone is another must-have. I didn’t realize how useful it would be until I had one and now I cannot imagine not having it. When I am on oxygen or too sick to speak, I text words and photographs like a fiend. When I needed to update concerned friends and family each time I was in the hospital during the pregnancy, my iPhone was essential. Sometimes there are too many wires and monitors and it is much easier to whip out my tiny phone than it is to use the computer (especially when very pregnant!) I would update my husband, catch up on e-mail, and use the Internet during my non-stress tests, and even used the iPhone’s Voice Memo function to record the sound of her heart beating to share with our parents. There are also a ton of health-centered apps and tracking functions for the iPhone.
I am spatially challenged and horrible with driving directions and the map/directions function is huge for me. In fact, I will be using it today to get to my daughter’s appointment with a specialist at (literally) the only hospital in Boston I have yet to enter.
And on bed rest? Well, my phone and my laptop were a 10-week lifeline.
Other necessities? A BPA-free water bottle to track how much I drink. Fluids are important for breast feeding and also help loosen/thin out mucus, so it’s great to carry the bottle with me wherever I go to stay on top of that.
A smaller, more portable nebulizer that can even fit in my diaper bag if I needed it to, and back up inhalers so I have some for home, for my briefcase, etc.
A gym membership or exercise in general; exercise isn’t just good for the body as a whole (especially after a baby!) but is actually medically necessary for my lungs—if I keep things moving around in there, infections don’t get a chance to linger as much. If I time it so I exercise right before my daily chest physiotherapy, I can really maximize how much gunk I can cough up.
The obvious? My blue health insurance card. The numerous daily medications, the daily physical therapy, the medical equipment, the coverage for my specialists, the lactation support for my daughter, the coverage for my many hospitalizations and tests—this little card makes so much of that possible. I work extremely hard for my health insurance and have made a lot of sacrifices to get it, and know I am lucky to have comprehensive coverage. I cannot imagine life with chronic illness without it, and realize not everyone is as fortunate.
There are many more, but I am actually off to a doctor’s appointment right now.