Day 10: What little things make your life easier?
First off, my answer to isn’t going to 100% answer this question. Rather, these are more life hacks that have made living with chronic illness a little easier. These hacks have worked well for me, but each persons experience with chronic illnesses are going to be different. What works well for one person, might not for the next.
Home Helpers: Home Helpers is a service generally provided to elderly people, but is also afforded to a younger, disabled population. They help by providing services that include cleaning, cooking, running errands, picking up prescriptions, and provide an aspect of socialization for people who may not otherwise get it. Due to my age, and lack of proper funding, I am only able to receive 4 hours a month (1 hour a week). Though this may not seem like a lot of time, someone cleaning my apartment once a week has been immensely helpful in keeping my home clean and accessible, as well as saving me spoons I would otherwise be using to clean.
Home Nursing Agency and Nurse Case Management: Once a week (sometimes more often depending on my health) I have a home nursing agency that comes out to my apartment. The main purpose of their visits is to change the needle to my port, change the dressing, and to draw labs. These labs make sure that I am getting the proper amount of nutrition, vitamin/minerals, and hydration to support me. Additionally, due to the fact that I have had sepsis twice since November 2016 (a unfortunately common side effect of TPN), they monitor my blood cell counts, inflammation labs, etc. to make sure I am not being overrun by bacteria again. In addition to attending to my port and labs, provides me with access to healthcare in situations where I may be unable to access health care, or am not sure if I should seek medical care. In addition to home health care, I also have a Nurse Case Manager through my medical clinic. She has been an absolutely irreplaceable member of my health care team. Not only is she an amazing person, but she also checks on me regularly, provides me with an easy, quick way to communicate back and fourth with my physicians, and also gives me a medical professional to check with in situations where I am unsure if I should seek medical attention or not.
Caring, understanding physicians: I CANNOT stress this one enough. Having a chronic illness, you go through your fair share of physicians who simply do not understand your condition. Some physicians treat patients as if they are crazy when they are unable to find a diagnosis or effective treatment for them. For example, I had a local physician who was unable to figure out what was wrong with me. This was not his fault, he simply was never taught about dysautonomia, and thus didn’t know what he was looking for. However, he told me that I was anxious, aware of my heart, and needed to lose weight. I am fortunate now to have found an amazing team of physicians who have done nothing but fight for me and my well being.
Fit bit, Blood pressure monitor, medical alert bracelet, and medical ID app: Technology provides use with an amazing opportunity to track our health. For example, I use a fit bit bracelet to get a GENERAL idea of what my heart rate. Additionally, I have a automatic blood pressure monitor at home to track that as well. Before going further, I know everyone knows this (but I feel the need to say this anyway) home trackers such as fitbits, blood pressure monitors, pulse ox’s, etc., do not replace the advice of physicians. I also use my fit bit as a medical alert bracelet – please visit here if you are interested in learning more about medical alert bracelets for your fit bit. Finally, for this section at least, I’m going to touch on the marvels of the cell phone. I have an app on my phone called Medical ID – ICE Contact. There are two versions of this app, a free and a paid version. I have the paid version, as it provides me with a few other services. This app allows me to organize my diagnoses, medications, and physicians all in one location in case of an emergency (for EMTs and hospital staff). The paid version allows me to have a widget on my home screen that takes medical personnel to the app, as well as send out texts to designated emergency contacts in emergency situations.
Wheelchair: Losing my independence in mobility was probably one of the hardest changes to me. But if I’m being honest, using the wheelchair has actually been a godsend to me. Getting around is still difficult, don’t get me wrong, but being in the wheelchair provides me with a little more independence. Before the wheelchair, I had to have someone with me all the time in case I fainted. While I still faint, my fainting is almost exclusively when I am changing positions, e.g., standing. Now that I am using the wheelchair, I have less worry about leaving my apartment and fainting in public or getting hurt. Additionally, it helps keep me from fatiguing as quickly, provides me with a place to sit when I am tired, and helps with my weakness.
While there are other things to cover, I am getting tired, so I am going to end on Prepacked Hospital Bag: When you’re chronically ill, you learn to only go to the hospital when you have absolutely NO OTHER CHOICE. If we went to the hospital every time we felt sick, we’d be paying rent. I almost exclusively only go to the hospital when I know I am going to be admitted anymore (for example, when I knew I had sepsis). When you’re that sick, the last thing you want to do is spend the time packing your bags. I have gotten into the habit of prepacking a hospital bag with clothing, spare chargers, a blanket, my hospital stuffed animal (picture below – it’s nice to have your own stuff with you at the hospital), toiletries, etc. As such, the only thing I need to pack prior to going to the hospital is my computer, my phone, and my tablet.
(This is Wala No Spoons. This is my second hospital stuffed animal. He goes through what I go through. He replaced my previous hospital stuffed animal, Patty the POTSie Penguin who was unfortunately thrown out by the hospital. Needless to say, I will be keeping a close eye on Wala).
I hope that this post was helpful and educational. I would love to hear from other people about what their chronic illness hacks.
Thanks, lots of love,