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...

August 8, 2019 letting in the light




I asked Dr. Margolis today if he thought I could still improve, & he said that's why he does progress reports - because he wants a chance to talk with his patients, and also see if there's measurable improvement.

For me, his answer is yes, he can see actual improvement from the last time he saw me. He noted that because he's gotten to know me, he has a real sense of how I'm progressing, beyond purely standard measurements.

Which brings me to an idea that keeps rolling around in my head - that I need to compare myself to a previous point post-illness, not pre-illness. I'm realizing more & more that the picture I have in my head of what I'm "supposed" to be moving towards is really unfair to myself.  

Picturing myself doing some of the things I did before I got sick makes me feel like a failure. But that's totally unfair to myself, & just plain wrong. I didn't ask to get sick, & I've made a lot of progress. It's taken a long time, for a lot of reasons, but my progress is real. So the question for me is how to re-tool my life.

Rebuilding doesn't necessarily mean building the exact same structure all over again. Thinking outside the box, thinking differently needs to happen.

It's hard to recognize my PTSD anxiety sometimes. Sometimes it's an unmistakable, uncomfortable feeling. But sometimes it's disguised as depression, as a feeling of stuckness, of "what's the point of all this, anyway?".

I also still always worry about things going wrong - really wrong. It's hard to move past that feeling. I hate that I have to pace myself, & I worry that if I don't get it right - the pacing, that is - there's that "uh oh" feeling. Same thing when I challenge myself. I worry that I won't recover. But if I let all that negative, anxious stuff get in the way of thinking that some things can still be possible, it's like a huge dark blanket over my brain.

That blanket sucks out every bit of light. There's no room for creativity, or imagination. For thinking outside the box. Saying "OK, maybe you won't do what you once did, but maybe there are still possibilities for you. You really just need one or two ideas to work - not dozens!"

I've got to let all those bits of rehab work in me, like little bits of light coming through little openings in the negative, anxious blanket that threatens to cover me up.  Those bits of light can add up to something. 


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August 5, 2019 new social network, support



I looked at a post written May 16th, 2018 (My positive List), & saw how far I've come in a little over a year. It's important for me to see this. It's also important for me to recognize that I'm not going to do things exactly the way I did prior to getting sick, so a slightly different mindset matters.

People like to have stories with endings, with neatly packaged words of wisdom - life lessons if you will - delivered. I really can't offer that. What I can offer is a window into how I approach my life situation, my problem solving.

I am committed to continuing to do my home therapy vision exercises, as well as my Feldenkrais. I will try things that feel worthwhile to me - doing things purely to fill time doesn't feel good.

I'll do what I can to continue to build my stamina.

I want to fulfill my responsibilities as best I can.

I don't do the musical activities I once did, which provided a rich network - it's time for me to move on.  I don't know if I'll find new activities outside my home, but much of what I do for enjoyment is solitary - fulfilling, but solitary.

I need to find a new social circle, an in-person social network, people who understand & are supportive of my health situation. I'm grateful for my family, & for the friends I do talk to, but I need something more.

I'll need to figure this out.  I'll start looking for a support group by talking with my therapists, & anyone else who may be helpful.



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August 1, 2019 - Neurological integration - layer upon layer


This drawing is what grew out of my thoughts about neurological integration... I thought about all the bits that slowly come together, forming a new, larger piece, & how those pieces then become building blocks for more - so there are layers of neurological integration.

The "x" is because of how, to me, all my therapies intersect, & build on each other. Interestingly, my vision therapist Ann - to whom I showed the picture on my phone - said that diagonal lines, as opposed to using only horizontal or vertical, are a sign of integration.

The popcorn vectogram is a tool I used today for convergence and divergence, & I was proud of how long I was able to use it before needing a break.



I also used one of those old fashioned overhead projectors with a transparent picture of a bunch of mice on a skating rink - I had to find different objects hidden in the mice.

I was able to find seven (one was a pair of glasses hidden in ears, one was an ice cream cone in a hat), some of which I pointed out by circling the appropriate mouse, & crossing out the picture on the border.

My session was a work-out, but I thought to myself when I was done "I really AM making progress, understanding this whole process of integration - it really would make no sense to stop. PTSD Anxiety's physiologically reactive. But I can work, slowly, in layers, to recognize it, and hopefully respond and healthier ways. I need to keep going."

I'm incredibly lucky & grateful to be able, nearly eight years in, to be able to do my interconnecting - Feldenkrais, vision, and cognitive behavioral – therapies.


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