Unless you are a chronic patient, it is hard to imagine the daily challenges of those who are. Also, it’s difficult to understand how mobile apps help manage chronic conditions, gain control of pain, motivate yourself to meet your individual goals, and improve the quality of life.
When illness suddenly gets in the way, all the focus is on recovery, accepting the change, adjusting to new conditions, and finding a new balance. On this path, people should be able to use the technology they need at the time – they also can play the role of medicines. The experience that digital tools create has the power to change lives.
Managing chronic disease hour by hour: Bianca Rose Phillips
As I drift to sleep, I listen to a story about the Mosaic Maker of Marakesh on an app. This helps me relax at night since my tinnitus is really loud and my body is very fatigued. When I wake up, I put a morning soundscape on and make sure to drink a lot of water. Then the alarm sounds – it’s time to take my preventive medication. I also track the time I took the pill using an app.
If I slept well the night before, I am usually feeling good first thing in the morning. If not, and I am experiencing the effects of the lack of sleep, I let my family know that I need to take it easy and plan accordingly. It makes me upset to say this to the people I care about, but I know they understand and want to help. I then check my prevention app – I record any triggers throughout the day including foods, weather, stress, fatigue, pain, and/or lack of water.
As I go about my day, I carry medication and some appropriate snacks with me in case I feel an attack coming. I have an emergency button on my phone.
The reality is – I usually stay home unless I am feeling really good that day.
At about 11 am, I complete my physio exercises and record them on a dedicated app. The program was adjusted for me and includes guided videos on how to do the training. Then it’s on to meditation and breathing exercises before lunch. As we move towards 3 pm, I use a wearable that gently vibrates and helps relax me whilst I listen to music or a podcast. This is necessary when the fatigue sets in and I can’t rest properly on that day. However, even on those days, I do try to lay down for a couple of minutes if that’s all the time I can find.
This is how I manage vestibular migraine. The truth is – it was horrible. I was very sick and I was very worried until I learned about the condition, realized it was going to be okay and decided to commit to my recovery.
The cost of healthcare and challenges in accessing medical services are barriers for many. It can be tough to admit that there is a problem and that it requires support and to tell others that you need them. I had migraine for years before I was diagnosed, but it had become much worse towards the diagnosis. I constantly felt like I was on a boat and decided to stop driving – due to vertigo that comes with it.
Websites like Mayo Clinic helped me learn about the condition and share that knowledge with those who are unfamiliar. Digital health has empowered me to take control back as best I can, and I am no longer embarrassed either.