November 3, 2019 - My new normal

I'm special... no really, I am... I'm part of the roughly 1% of the population that has migraine associated vertigo... when I ...

January 25, 2020 - What do baby steps look like?

I wish my neurological rehab was easier, a lot easier... I wish I could go faster... I wish that I could follow a framework that would absolutely always work, no room for error. I wish that I never had any IBS flare-ups. I wish sensory overload was never an issue, and that my PTSD never got triggered...etc., etc.

Sometimes I feel like giving up on this whole rehab thing, saying "I've had enough!". I absolutely do want to enjoy what I've achieved in the last 6 1/2 years. It's really tricky to find a balance between wanting to make progress, and being grateful for what I have.

In the middle of all of this whole thought process, I remind myself that mistakes are part of the process, that this isn't an either/or, black or white situation. Life isn't like that, and rehab is no exception. AND that some things HAVE gone well.

Ann reminded me, when I told her how hard working on this motion stuff is, of how hard working for convergence was. We talked about being flexible with home therapy - some days I will feel able to do more than other days.

And it really is about baby steps. What does that look like in vision therapy?

It's about doing 5 cycles of the infinity walk - basically a large figure 8 - with the addition of 2 visual targets. That's the post-its with smiley faces on them. It's walking past gray stripes taped to our hallway wall, and taking them down at night, so I don't see them when I'm getting into the day, or at night when I'm tired.

The darker stripes are for a good day.

It's adding in 4 cycles of moving my face from one side to the other while keeping my eyes fixed on a target at my midline. Your midline is the middle of YOU - whether from side-to-side or up-and-down. Eventually having stripes in the background.

Baby steps also looks like self-compassion, and giving myself credit for every single positive, NOT just focusing on the hard, challenging, "this didn't go how I wanted it to.." stuff.

Baby steps... and find something - small, medium OR big - to enjoy every single day along the way.

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January 18, 2020 Baby steps... try... be present

Three things I know -
1 - my depression is situational - grief of loss, feeling stuck...

2 - my anxiety is rooted in my PTSD, from the sudden onset of my illness... when my fight or flight gets triggered, it's scary

3 - Trying anything new can be a trigger... so baby steps... baby steps...

Going forward -
No longer having convergence insufficiency is good - strange to think it's gone, but good... 
This opens the door to more work, hard work to further integrate my vestibular and visual systems...

still going to be challenging, hard work, not everything will work... gradual... and baby steps... try to challenge but not overwhelm...

Very little watching of movies, listening to audio books since my setback - sensory overload was too much... I want to get back these back in small pieces... this means changing habits - finding when during the day this works, trying... Experimenting...

AND give myself credit for what I'm trying...

AND be present... do the best I can to find some balance between therapies, responsibilities, self-care, and enjoyment... living...
Be present.

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January 11, 2020 - Keep going...

I heard big news from my appointment with Dr. Margolis (vision therapy) - I no longer have the diagnosis of convergence insufficiency!

He did a couple very specific motion tests, and said that the reason I still have trouble - for example, with reading - is because my visual vestibular integration is still giving me some trouble.

He's worked with me for a long time now, and says that there's been overall steady progress. He pointed out some of the ways in which I've made progress -some more obvious like glasses, and some somewhat less obvious like how will I tolerate something.

He also said that it's important for me to do work at home. He said even a few seconds of something matters.

It's hard to be traveling such a long, slow road, but if I hadn't kept going, I wouldn't have gotten to the point of him saying that my convergence insufficiency diagnosis is over. I still have work to do, and feel like I owe it to myself to keep going. I realize that I'm very, very fortunate to have the support to keep going.

I don't want to be so glued into doing vision therapy that it prevents me from doing something else, which would mean taking an occasional week off. I feel like taking breaks with such long term neurological rehab is important for my mental health.

I still have my vertiginous migraine disorder, which presents sensory problems, and I still have PTSD anxiety/depression. But it's incredibly encouraging to hear that something that I didn't think would be fixed - I mean, I've been doing VT for 6 1/2 years! - has been.

To anyone out there reading this, who's also traveling a long, tough road... find people to encourage you, and don't give up on yourself.

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