I had my physical yesterday and just being out and talking with my doctor was difficult. I did get confirmation of what I was thinking about the COVID vaccine and how it runs me into the ground but more on that later.
I've been using #Visible to track my #chronicfatigue and it has been really helpful in ways I didn't expect. With my #chronicpain I have been "counting spoons" since college ... but now I have more data to go with that.
1/
So #Visible uses "Pace Points" which is basically what us chronic illness folks call spoons. It takes spoon theory and puts it into actual data that can be tracked over time and seen and interpreted by a doctor ... it turns "invisible disabilities" visible.
It's a tiny heart monitor that you wear, a Polar (what you'd be wearing for a workout) just very small. Than it uses a series of questions and the Functional Capacity standardized test to give you a clear understanding of your data.
2/
I have never taken a Functional Capacity test until I started using #Visible and I was really surprised at how pointed and relevant the questions were to me.
I know long certain activities will ruin me. If I have to go out for more than an hour I can tell you that I won't be available the rest of that day and several afterwards. I use that wording when I talk to people about it. I know all these things about my body ... I've never seen questions that use the same language I do before ...
3/
The Functional Capacity Test is questionnaire developed and proposed by Sommerfelt K, et al, to evaluate an ME/CFS patient's severity, by 8 categories:
Hygiene / Self-care
Walking
Upright posture
Home activities
Communication
Out-of-home Activates
Photo/Audio Sensitivities
Concentration
I KNEW that I had trouble with many of these categories just from trying to live my life ... but what I didn't know was there was a test for measuring this or that there was a way of tracking it.
4/
So yesterday, after my doctors appointment ... which was long, involved me having to leave the house, go to a new place (they moved offices), get a physical exam, talk to my doctor about tons of stuff since I haven't seen her since last year. I knew I was done for the day (my appointment was at 9am). I got home ... I had a physical and mental crash. I was nodding off ... I couldn't do anything mental or physical for the rest of the day, not even gaming.
My Visible data reflects this ...
5/
I exceeded my "pace points" or in my own language ... I used all my spoons and didn't have any in reserve which means I was done for the day and that I would need a complete rest and recovery day today which is exactly what I will be doing. I know all that in my head and in my body ... I have known that about myself since college. I know how to pace myself and I know what I can and can't do and what recovery I need.
I've NEVER seen it displayed and collected like this before. It's incredible.
@thewebrecluse 🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄 💜 ☕
@thewebrecluse ^^er. Those are spoons. They look like map pins, but they're spoons, I swear.