September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

June 20th, 2020 - One day at a time - living with invisible disorders in the age of COVID-19



I don't know what the risk factor is for me for COVID 19, with my invisible disorders - all of which are neurological. Additionally, my husband is in the at risk group. So I'm erring on the side of caution. As an FB friend said, this is NOT a virus I want to get. It's not the flu. And my disorders have not magically vanished.


I had a good phone conversation with my aunt recently - she listened, which is so important! I told her that while I've greatly benefited from my therapies, none of them is a complete cure (currently, I'm only doing monthly check-ins with my cognitive behavioral therapist). My daughter asked me the other day if carrying heavy stuff makes me dizzy, and I said it's more like I have to work harder to keep my balance or equilibrium.

Having people ask questions is a great way to educate others, and helps me understand what I experience because I have to think about it.


VeDA (the vestibular disorders Association – www.vestibular.org) has loads of info about a lot of vestibular disorders. Migraine associated vertigo or vertiginous migraine is a vestibular disorder - it became an official vestibular diagnosis relatively recently. I have other disorders as well, like my vision disorder, which is closely linked to my vestibular disorder. I like to use the word "disorder" because it makes sense to me - something is "out of order."

When I have trouble, I remind myself that I have the info and management tools to take care of myself, AND that I always, eventually, get back to my baseline. I also know that at the age of 59, I want to be around for a long time yet, so short term cost for long term gain is OK with me.  Making decisions won't always be easy, but I'll do the best I can. I'll also continue to try to notice anything positive, pull myself back to the present, and take things one day at a time.


I couldn't stand on one leg like flamingos do, but isn't it amazing that they have this capacity!


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