Gizmos and social media: WEGO 30 posts in 30 days

“I wish this gizmo could track my condition!” Write about which device, application, program, etc. you wish helped to track your health.

There are some pretty good migraine and chronic pain recording apps on the iPhone which I rather like and I find easier to use than the ones that used to be on the computer… since I can just pick up the phone rather than have to go to the computer and log into the system. And I can track my medications and appointments on there as well.

I wish I could have a little portable brain scanner. Make 3D images of the brain so doctors could see the migraines or see the changes due to FM over time. That would be pretty awesome. Even better if they could develop something so that it could show how I literally see out of my eyes… all the distortions I see from my persistent migraine auras and visual snow. And then I could give that little video to the neuro and say This is how I see. The reason for that being while I try to explain how serious those auras are they don’t seem to understand… so I am the one who ends up trying to find different ways to help myself see better and trying not to drive, but obviously if my medical condition overall is never taken seriously and I go back to work then I do drive. On bad days that is not a good idea, on good days I like to think I can see past the distortions and ignore them but the fact is they are there and a constant distraction. Certainly driving at night is out of the question. So a device that could show my visual reality to someone else would be valuable. Plus they would make some awesome videos for migraine awareness given all the weird auras I get. Or they could Feel the vertigo I do and comprehend how serious it is.

Write about what it would be like without social media

I am old enough to remember this actually.

So there.

I have had a blog for a long time and in the beginning you are communicating with yourself and then just a small select group of people. I have had chronic pain, FM and chronic migraines, before social media existed and that creates a lot of isolation right there because over time I had to cut out a lot of my social life in order to function on some level at work.

And there was no local support groups, had there been I wouldn’t have had the extra energy to go to them.

I used my blog to reach out beyond myself to others to get past some of that isolation and have that sense I was not alone. Also message board and forums… very valuable. Still you have this feeling you are cut off from the world, from your peers because you are so limited by your illness that you cannot make the connections that last and endure that others do… just these short passing acquaintances when your health permits, which for an introvert is fine but does not stop the feeling being alone in a group and the lack of anyone being able to comprehend your particular issues.

Social media though gives me a vast resource of connections. Many ways to interact and connect to other people. Many ways to share experiences. More groups and forums. More methods to share and receive information and research. It gathers communities of people and people will then group together, share information, share support, and communicate.

Without it… I would be cut off. Isolated. I am a hermit and I get that. But I have this road for communication when I cannot go out and socialize. When I cannot find people in my area for support. When I cannot leave my house. It may seem like a limited way of interacting but it is extremely valuable if it is one of the only ways you interact. I could live without it certainly. I would write more likely and find different avenues to publish those writings because that is what I do. I just wouldn’t have the interactions and the connections in the immediate way that social media offers. I would however still have support through various forums because that I find to be fairly necessary. I value it because it gives me back a little of something I had to give up for one. And I value it because it has a way of bringing together large numbers of people who have the same conditions, or invisible disabilities so I know I am never alone, I know that people will always understand what I am going through and people will also not only comprehend my story but have similar stories.

To not feel alone in this pain is a precious thing indeed. To know that others experience the exact same thing makes you feel like you can battle it as well.


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