This guide was written by Casey Abbott Payne.
There are two main groups that I have for support and I have them both set up with Facebook. My wife created a third Facebook group during my last manic episode.
- Small mixed group
- Support team
- Crisis team
Small Mixed Group
A group of about 50 people who either have bipolar disorder or support someone with bipolar disorder. Some people use the group to vent, others share tips and tricks, and some people lurk and learn.
When my wife got added and she was able to see that there were people who struggled with the same things I struggle with it helped her be more compassionate to my disorder. Mental disorders, unlike physical ones, are harder to be compassionate about because things look fine on the surface.
I created and left a group for close family and friends who agreed to be a part of my support team. This allowed them to share notes and stay informed when someone notices me being erratic. This way the team can attempt to get a “second opinion” about symptoms. An example of this is my brother checking in with me via a phone call based on a comment in the group. A second opinion can help distinguish between a true symptom of mania or just genuine excitement.
During my last episode my wife made, what I’m calling, a “crisis team” group. This group was filled with people who were “on the ground” and able to visit me while I was in the mental hospital. This group allowed everyone to coordinate when they were going to visit so there wouldn’t be any overlapping times along with coordinating bringing supplies (phone cards, reading materials, etc.) This took some of the burdens of support off of my wife and distributed it to friends.
There are 3 quadrants that I currently have data in:
I think these are the three most important data points for myself besides medication. I would ultimately like to quit using medication daily as a part of my management. In order to do that I’ll need data points from myself (most importantly) and from friends, family, and professionals.
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Tracking again. The mood image is from the @yale_emotions #MoodMeter app. Google "mood meter" for a full breakdown of how it works. I'll share the words I used to describe my mood as hashtags. I'm going to do more detailed tracking in a @Google Sheet (like meds and activities). Thanks Robbie! #blissful #fulfilled #proud #bored #beingbipolar #bipolar
To create this image I use a free app/service Canva.
The image for “Mood” comes from an app from Yale’s Center for Emotional Intelligence called Mood Meter. In the past, I tracked mania, depression, anxiety, irritability, and obsessiveness on a none to extreme scale.
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The contrast between this past week and the week before is crazy. Feels good having my sleep back to normal and unassisted by #seroquel. I'm looking forward to the next energy spike as it will be the first time I track it without having seroquel in my system. #0mgseroquel #100mglamictal #lamictal #bipolar #bipolar1 #beingbipolar #mentalhealth
The flaw with the mood stats above is that when I have a “good” day everything is none and I’m not getting any data. Using the Mood Meter app, while not perfect, it gives me data every single day on two axes (high to low energy and pleasurableness).
I have an (“out of print”) Pebble watch for step tracking, but there are also apps for smartphones, like Google Fit for tracking steps. I manually adjust the steps and type of exercise inside of the Canva app.
I use Sleep as Android for my sleep tracking. It has a lot of advanced features but I use it for two main things. Tracking the amount of sleep I get each night and tracking my “sleep deficit” for the week (you set a target number of hours for each night). I also manually update those stats in Canva.
Here’s an example post of when things weren’t going so well:
I used the 4 of the 5 colors used for the Homeland Security Advisory System (green, yellow, orange, and red).
Sharing the Information
I use Instagram to automatically share the image on two additional websites (Twitter and Facebook). Facebook sharing is built into Instagram. Twitter is as well, but it only shares a link. If you want the photo to be shared as well you need to use a service called If This Then That (IFTTT). Once you have an account you want to set up “Tweet your Instagrams as native photos on Twitter”.
Getting the images shared to Twitter is really important to my brother because he is able to see how I’m doing at a glance with the color codes.
One thing I wish was easier to implement is open communication between psychologists and psychiatrists. In high school, I took an experimental calculus and physics class, at a college, where the professors worked together so the math and physics being taught would complement each other. That was a simple adjustment that made a lot of sense. Likewise, it seems like psychologists and psychiatrists would work in tandem but… they usually don’t.
I’ve been working on manually bridging information by signing paperwork and getting documents printed to share.
This is a service I would absolutely be willing to pay for. This person would be the hub connecting everything together. Tracking, friends, family, professionals, and even governmental services. Whether through an app, an email, or a phone call people could semantically report issues or request information. If I’m struggling I could ping this person/service and they would be able to make the phone calls that I couldn’t make or check-in with me when I miss a day of tracking.
One story that comes to mind is the day that I needed to get extra medication because I was going to be traveling. I tried to take care of the issue myself, but I got stumped by the paperwork and red tape and just didn’t have the capacity to deal with it. I ended up giving my brother a call and he broke through the red tape and got everything sorted out for me and I was able to pick up the extra meds that I needed.
People going through mania or depression sometimes need someone to do “basic” things because they’re unable to do them in their current state of mind. When someone isn’t available to do these basic things it can have a cascading effect which leads to hospitalization, or worse.
I’m hoping that I can develop an /service that does everything listed above and more. I’m very open about my bipolar disorder so leveraging social media is fine for me but others would need a more discrete system for sharing stats. I hope you found this page helpful. If you have additional resources you’d like to share, please list them in the comments.