Bianca uses a mobile app to learn how to deal with severe migraine. “I wish I could have had access to this kind of tech some eight years ago,” says Bianca Rose Phillips in an interview with digital health journalist Artur Olesch. Her authentic story proves that the value of technology is defined by its user.
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.
Despite these challenges, I have kept smiling, even if I didn’t feel like it, and I guess I feel stronger for having managed it with some grace and improving my ability to communicate my needs as a human. Mental health is so important, particularly if you have a chronic condition.
During migraine episodes, I notice that I need to remind myself of the good and stay positive. Apps have been essential to remain focused on mental health – both mine and those who help me – during the hardest parts of this journey. Creating a podcast, content and connecting with others on social media has also helped me during challenging periods.
These are just a few examples of how digital health has helped me in my life.
It has been profound in many ways. I wish I could have had access to this kind of tech some eight years ago after the loss of a very wanted pregnancy and feeling so alone, despite the good intentions around me.
I needed tech, information, a good doctor, and I also needed to back myself as a 26-year-old woman – all of the above. This experience eight years ago led me to specialize in digital health and medical law.
I am very fortunate that I was able to have children. Now, as a mother of two – having experienced pregnancy, delivery, feeding, and parenthood, I know firsthand that technology can offer great assistance and support.
I recognize the importance of accepting one’s own circumstances and moving forward. We can suffer in silence due to very real and genuine concerns about how sharing our health will impact others. Or we will change the ways that others look at us or our employment. Yet we all encounter these very real human and life experiences and can relate to one another on that level.
Gratitude for life helps humans push forward in challenging times.
Additionally, I have found that when we consider matters that are profound for humanity and the world –The Digital Health Revolution – it can be easier to find strength and fortitude, which are elements of the human spirit.
The reality is that nobody knows what the future holds with their health, but technology and medicine do offer us immense hope and I think we have good reason to be optimistic.
I am excited about the future we are building, and I hope it goes well.
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