Self Help

Here's some things YOU can do....

Managing your own Medical Team and Treatment Plan

One of the biggest tips i can give re management of this alternate universe, is to JOURNAL EVERYTHING

It gets tricky if you're not a writer, and there's so many sources of information to try to keep track of!

I get it.... here's some tricks Ive adopted to assist me with keeping a track of my own health care, I hope they help.

Use Google Forms to design your own custom records that save to your drive, you can save the form to your desktop or mobile desktop. Everytime theres an event, you can record it, and then choose to send either a spreadsheet, analytics or individual records to your medical team as required.
Don't panic if you don't know how to do this, you could also use your digital calendar, I find marking the events a different colour easy to see and find, and it also gives a visual indication of the frequency in month view.
Create an email Just for your health records - not your aunty. I have done this, so that I know any related health information is in one place. This email is also used for medical alarm services, and health apps I use.
Use a Diary - You may be quite happy to jot things down in a diary, It's a matter of whats convenient for you.... and like a digital calendar, keeping track of upcoming appointments is made easier.
Cloud space - Whether you're an Iphone perwson, or Android, or strictly Microsoft - each has a cloud storage service. This comes in handy for things like reports from specialists, or photos or xrays, as an example. Creating a folder and uploading things as they come along means you have that back up. Just make sure you dont share it with anyone, as this is your private information.
APPS - There are many apps, and we are working on developing one just for tracking FND events. Until then Google Play Store and the Apple and Samsung stores offer health apps and journals that may be suitable.
Contact list - Keep one. There's nothing more frustrating than looking for a number for 'that lovely blonde lady that came over that day' - when a simple save of contacts with the company details as well would have helped immensely, digitally or otherwise.
Alarms - Use them. Set a schedule for medications, showering, waking,,,, we all have days where we will dismiss it, but at least you're not forgetting it becasue of brain fog.
Timers - Egg and cooking timers have really helped during times I am alone and cooking. As I easily get distracted or fogged, having a timer alarm (I have two) go off prevents kitchen fires in my case.
Follow Up - in your diary, or calendar, or app, set a reminder date for when an action, appointment or results or what ever that is coming up in the future, may need follow up. For example, I had an assessment, and was told it could take a few weeks to get the report. I set a reminder for 1 months time to follow this up, and see if its done. We get that people get busy, and we also remember that people are fallible, and things happen, which may mean your report or document falls by the wayside. Setting reminders can prevent you from being accused of being irresponsible and forgetful (we all know its them, not you!)

Hidden Disabilities Aus/NZ

The sunflower is the symbol for hidden disabilities. the picture will take you to the FND section of their website.

This website also sells sunflowers lanyards. As awareness grows, wearing one of these lets people know theres a hidden disability without the confrontational excercise of having to explain it unless appropriate.

Dark Chocolate

That is, the 70% Cocoa stuff.

Having a couple of small pieces mid- morning, and mid-afternoon, helps a ton.

Here's why....

"Dark Chocolate Intake May Reduce Fatigue and Mediate Cognitive Function and Gray Matter Volume in Healthy Middle-Aged Adults" -

retreived from NIH Article Behav Neurol. 2022; 2022: 6021811.

Published online 2022 Dec 13. doi: 10.1155/2022/6021811

Quotes results as "We found that dark chocolate reduced mental and physical fatigue, and a path analysis revealed that it enhanced vitality, executive function, memory, and gray matter volume both directly and indirectly. Fatigue reduction was also associated with an improvement in physical function, which had a positive impact on emotional functioning, relief of bodily pain, and social functioning. "