One thing that's been really important to me since getting sick is comfort: I buy products to achieve it and I focus my self-care all around it. When you're chronically ill your body is doing anything and everything but making you comfortable. So whether it's a heating pad that goes on the exact right parts of my neck or applying cooling wipes that get the job done, I'd invest big bucks to find any tiny bit of comfort.
Throw in a flare, a late night ER trip with loud noises, bright lights, sleep deprivation, and doctors uneducated on your illness and I'll quickly become in my most uncomfortable state. After multiple ambulance rides I decided to create a "hospital bag" to keep by my front door and bring with me to the hospital. Every time I was in the hospital I'd think "oh I wish I had..." and would make sure to add it to the bag when I got home. After years of doing that I've finally put together a hospital bag that suits my needs.
My hospital bag has become a huge source of comfort in the most uncomfortable nights so I thought I'd share with you what I include in mine.
-ear plugs (this + my eye mask are the only reasons I can sleep in an ER bed with bright lights on all night + loud noises)
-a comfortable eye mask
-another one just in case (I can't sleep without one!)
-a neck pillow (if you're in the waiting room for hours without a bedand want to sleep this is also really helpful!)
-unscented cream (try to make your products scent-free for those who are sensitive to scents in the hospital)
-a mini shampoo (if I end up staying there for a long time)
-body wash (if I end up staying there for a long time)
-"fresh'n up wipes" (they're feminine wipes but I use them all over if I can't get to a shower in the hospital)
-a mini hair brush
-a small journal
-a book of "serenity" prayers, poems, devotionals, etc. an easy and encouraging read when you're at the end of your rope
-a light sweater for if you're cold
-3 pairs of underwear
-headphones!! a lifesaver
-a portable phone charger
-a phone charger
-a small extension cord if there's no outlet near your bed!!
-glasses & glasses wipe
-a water bottle
-coins for vending machines in the hospital
-a scarf that can double as a blanket (if you're cold, also good for ER waiting rooms)
-extra meds because sometimes if you're in the ER and not yet admitted they won't have your meds available (haven't been able to order them yet) and waiting while you're symptomatic can be the worst
-meds the hospital often doesn't carry (gas-x, for example)
-cooling wipes!! My LIFESAVERS! I don't leave without them!
-roll on essential oils for pain
-roll on "immune" essential oil from Saje (to help with all the germs in the hospital)
-some vitamins (not all of them but the essentials: vitamin D, C, and magnesium)
-a trigger point roller ball for pain
-I don't know what to call it but it's a grip hand weight- it helps prevent deconditioning if you're bed-bound
-nuun electrolyte tablets
-vitamin C drink packages
-compression ankle wrap for my messed up ankle
In my medical folder:
-I printed out articles about all my conditions in case I come across ignorant doctors
-I have a list of my medications and a list of my doctors
-I have in case of emergency contact information
-a copy of a report from my geneticist explaining my symptoms and treatment plans
-a copy of a report from my POTS specialist explaining my symptoms and treatment plans
-a letter from my Mast Cell Activation Disorder specialist regarding what to do in case of an emergency and what blood work he'd like them to order
These are the main articles I chose to include:
1. My doctors (who aren't educated about POTS) have found this one helpful:
2. An article explaining why saline infusions are important for those with POTS (super useful to have this article in the ER) https://www.ncbi.nlm.nih.gov/pubmed/28185102
4. Printed off wallet accommodation cards
EDS & surgery articles I included in my medical folder:
5. 3 copies of this
I think the eye mask, ear plugs, and medical folder have been used the most frequently and have provided the most peace and comfort for me during my hospital stays. What's in your hospital bag?