No matter who you are, or what you have, adjusting to life post-transplant or a new diagnosis is a lot of work. Being sick is a full-time job and finding out what works for you can take years of trial and error. It’s taken me 5 years of being a sick person to find a routine that works for me! And post BMT I’ve had to adjust that too. However, I’ve defiantly learned a thing or two about how to manage life along the way. This is the first in a series of posts about what I do to manage everyday life; from skin care to medications and how I stay active and organized as a twenty-year-old college student. & while some of this might not apply to your specific situation, I hope that some part of this gives you some useful ideas for everyday life.
Before you read, here are some important things to keep in mind:
Make sure you take a break from technology! I regularly take “break days” where I don’t wear my Apple Watch or try to limit my social media access. If you feel like something is bad for your mental health, give yourself a break! Separation from technology every once in a while is good for the soul. You are more than data and numbers.
What works for me, might not work for you and not nearly as fast. All BMTs are different. All chronic illness/cancer patients/invisible illness/etc experiences are different. These are just some tips, ideas, and products from someone who has been there before. Do what feels best for you!
Apple Watch: ($400)
I decided to ask my parents for an Apple watch as an early birthday present this year because I wanted to use it to track my BMT recovery. The ability to have EMS services and GPS tracking on my wrist at all times makes me feel safe, in case something were to happen and I needed assistance. The watch also tracks my BP, reminds me to drink water, and take my medication. It also reliably tracks my workouts and runs, which is something that I absolutely love. Being able to collect a ton of data on my recovery has been absolutely fascinating because it shows my body regenerating itself in real time. For me, this was a worthwhile investment (but for sure expensive). Definitely not for everyone, but I haven’t regretted it.
Round: Medications (Free)
This application is amazing. It’s an easy interface and free! It organizes all of my medications into doses, how much I have, reminds me when to take them & how much. It has most certainly kept me on task on days when I have not been.
Google Calendar: Scheduling (Free)
I love Google. I run my entire life through Google Drive and scheduling my life is no exception. I love the fact that I can set tasks and goals into my schedule for things like writing or working out, as well as color code my appointments. This is a great app for college students too and I used it as a planner to keep track of assignments. Right now, I’m using it to schedule time to edit my novel manuscript and track when I read throughout the day. For my health, it keeps track of all of my appointments and helps me remember things that I need to ask my doctor.
Cardiogram: Blood Pressure/Activity (Free)
This app is just super cool. It can track everything from blood pressure to steps to your everyday habits. It gives you a ton of data! If you’re someone that needs to report that, this app is definitely for you.
OneTouch: Blood sugar (Free)
Occasionally, BMT patients become temporary type 1 diabetics because of high doses of steroids. This can happen to a lot of other people for a lot of other reasons too, which is why I’ve chosen to include it.
OneTouch syncs my BP monitor and it creates a nice, readable data chart ready to be sent to my doctors whenever I need. This has been super helpful and a complete game changer. It also records how much insulin you give yourself, what type, activity, and your carbs. Really handy!
Livestrong MyPlate: Food & Water (Free)
While this is traditionally a weight loss app, I use it to make sure I’m eating the right amount of calories every day for what I burn and also to keep track of food for my BMT team. I’m on a crazy diet, so keeping track of food is a big part of my life. I can also keep track of water, which is important because I have to drink 2 liters a day!
MyPlate has a good, easy to use interface compared to other apps I’ve used, and Livestrong also has workout and meal plans if you want them.
I used Livestrong initial grocery list for their “weight loss plan” to build a healthy grocery list, even if I wasn’t using it to lose weight. Some weight loss plans can give you good ideas for healthy food options, even if you don’t want to drop 50 pounds.
Pro-Tip: If you have a history of disordered eating, make sure to prioritize your mental health. If you think that keeping tracking of your food intake is going to trigger you, then make sure to talk to your doctor about how you can adjust. This is something I really struggled with during this process. It’s okay to ask someone for help.
Simple Habit (Subscription: $120 Yr)/Headspace ($99 Year, $9 for Students) (I use both)
I got into meditation through my therapist and I’ve been hooked ever since. This is something I love doing and this app has a meditation for literally every single possible situation you could find yourself in. Even if you’re not in BMT or have health issues of any kind, learning to create space in my day to prioritize myself has been a game changer.
Daily Yoga: (Disclaimer: Yoga doesn’t work for everyone. You should never suggest a person with a Disability or illness try Yoga because you think it could work for them. Everyone is different. This works for me because of my recovery, but for others, it is dangerous and painful.)(Free, Subscription available)
When I first began using this app, I was so weak that I couldn’t even do a full work out. I started with my physical therapy from the hospital and have gradually worked my way up to doing beginner level strength. Combined with my own workouts from PT, this is something that I do for 30 minutes to an hour every day. Now, most of that is me laying on the ground listening to a Podcast, but this definitely helps guide me in the right direction. And honestly? You don’t even have to follow what the instructor is saying. Just using it to get ideas is super helpful!
Eve: period tracking (Free)
This app is great! It keeps track of my periods, sexual health, hormones, and everything in between. It also has a good center for asking questions and providing lots of good sexual health information.