November 5th, 2018 - updated 10/19 - trying to describe my MAV experience

I wrote this to help my parents & Ron (husband) understand my MAV - Hopefully this info will help someone out there, so I'm shar...

Archive for August 2018

August 31st, 2018 It's been, and continues to be, quite a journey...

September - September starts tomorrow... That's the month I got sick 7 years ago... I feel a prick of fear, and remind myself that I've lived through 6 Septembers without a health crisis... I've ALSO survived literally falling down, as well as setbacks both large and small and in between.

Time - I feel like it's time for me to stop thinking so much about EXACTLY how long it's been since I got sick... What really matters is what's happening NOW, trying to live and enjoy in the present, AND trying to keep moving forward.

My story - I remind myself more and more not to compare myself to others - this is my story... I might relate to something that someone else is going through, we may share some similarities, but ultimately my story is uniquely my own.

Challenges and learning - I still have a lot of challenges to deal with, and no way to know how far I will get, but I'll keep trying to figure things out... It is truly amazing to me how much I have learned, and continue to learn, about my neurological self.

My team - I had NO idea when I got sick that it would take 5 people (in the order they first came on the scene) to help me - an OT/ Feldenkrais practitioner (Joyce), a vision therapist (Ann) and her supervising developmental optometrist (and my doctor, Dr. Margolis), a psychiatrist (Dr. Mirsky), and a CBT/mental health therapist (Christina). 

Connecting - I'm grateful my friend Leora told me about Joyce, who in turn told me about Dr. Margolis.  I figured out I needed to work with a psychiatrist, and Ron helped me find one, Dr. Mirsky recommended cognitive behavioral therapy, and Ron discovered the anxiety treatment center where I got matched up by Jen with Christina.
Myself - I've discovered I have strength and courage inside myself that I never would have guessed existed... I'm also resourceful, creative, kind, smart, and I'm realizing that especially with the rehab, I'm definitely a work in progress ... What a journey it's been, and continues to be.

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August 27th, 2018 Thinking... keeping going...

thought #1  - what if I try, and succeed?

thought #2 - I need to trust, have some confidence in ME

thought #3 - shouldn't focus on how long ago I got sick, rather what I'm doing NOW - today...

thought #4 - small stuff adds up, it really DOES, so it matters

thought #5 - "failing" is survivable - I've always learned from mistakes, set-backs, etc.

thought #6 - DO give myself space to grieve, feel frustrated, scared, etc. - it's ALL part of my experience...  ALSO DO keep going!

thought #7 - there's no way for me to know for sure how far all the little steps that add up will take me, AND I want to enjoy some things in the present - little steps and present enjoyment are NOT mutually exclusive...

thought #8 - BREATHE, pace yourself... and yes, keep going...

thought #9 - maybe even let yourself feel proud

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August 24th, 2018 The truth is, I'm scared...

I decided to share this post, because I thought it might help somebody else, who's struggling like me... I also promised myself I wasn't going to edit this a ton... So here goes-

I thought the knot in my stomach was about sadness, and I do think that's part of it, but another part is that I'm scared... Yesterday Christina asked me if I was making choices out of fear and I said no, and it was an honest answer at the time... But I kept thinking about her question, and last night I realized I'm very scared...

I'm supposed to be okay with my daughters going back to college, but I'm not... It really scares me that they are moving ahead with their lives, because I'm afraid that because of my disorders I'm going to be left behind.. And the truth is I'm full of self-doubt about whether or not I have what it takes to go as far as I can with my rehab... I don't really know what I need, I just feel like I don't know...

When I'm asked what my goals are, I can come up with stuff but the truth is I'm not really sure, I just know that I want more... I'm always told, and I've written about noticing the small stuff, but there's always a part of me that feels like screw the small stuff - it's not enough!

And if I try and I fail, what if I don't like where I'm left? THAT scares me... I also realize that feeling scared is a kind of anxiety - after all, why are panic attacks called panic attacks?  Because they are a state of high anxiety... Sometimes I feel like I'm in a slow-motion panic attack...

I wonder if I will ever be at a place that feels truly, authentically good... Obviously I want that... damn, this is HARD... I wonder if this is the "it gets worse before it gets better" part... I hope so... I really hope so.. and I hope EVERYONE - including my psychiatrist - can help me get through this.


August 21st, 2018 Leaning into loss, to find my way...

I was in Leena's room, and she asked me "what?"... surprised, I answered "I was looking at your curtains, and remembering when I made them... I'm sad that I can't do that anymore... does that make sense?"... Leena nodded.

I feel, sometimes, like everywhere I look there is something that reminds me of something I used to be able to do... I don't think what I'm dealing with is all about PTSD Anxiety, though that's real... underneath that, I've been scared to deal with all kinds of loss, both large and small.

I feel like I'm the same person I was 7 years ago, and totally different. That's not being negative, it's reality - there's a big difference. I don' think it's all about negative thinking - rather, it's time for me to grieve.

I started vision therapy (VT) 5/13 - 1 year and 8 months after I got sick... Neurologically that's an incredibly long time... they say when someone has a stroke, that seconds count... I've made progress in VT - a LOT of progress - but I still have challenges... getting beyond a certain point in some areas feels - stubbornly - out of reach.

I think it's time - before my daughters winter break - for a break from VT - perhaps a couple of months.. a break that isn't dependent on my daughters' schedule, though I want to wrap up my VT a bit.

I don't know what kind of mental health therapy feels right for me right now - I need to talk with my current therapist, and a couple other people, and find out what my options are.

I think I need to deal with this hole in myself, this knot of emotion... I need to lean into my loss, to find my be able to really look around, and say "OK, so what have I got?".


August 13th 2018 Finding my new normal...

I started listening to Year of No Clutter: a Memoir - I did not request it, but I'm glad I got it... I don't have a clutter problem, but I DO feel I need to sort through what belongs to my life pre-illness.

When someone you love dies, there's a process you go through, and with my daughters going back to school, my older one for her last year, and me coming up on 7 years since I got sick, I need to DO something to help me process my loss... not a shutting out, or running away from how it all feels, but a memory trip, a goodbye, and integration of my previous life with what I'm moving towards... I was alive for 50 years before I got sick - that's a lot of living.

I'm moving more and more towards living in the present, trying to do things that are meaningful for me NOW... finding my new normal... I listened to an article about a woman who can't travel, who watches travel shows, and learns about whatever sparks her interest - I thought "what a great attitude!"... she does what she calls "simply special" things, totally at her own pace.

I'm much more functional at home, on most days, than I used to be, and I envision taking time off from vision therapy, and the PTSD Anxiety work I do, when my daughters are on break this coming Winter... see how I feel doing only Feldenkrais for a sort of maintenance.

Here are links to the article, as well as the book.

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August 8th, 2018 It ALL adds up, and my PTSD Anxiety's the key...

Here's a pic of my newest signs... doing these signs was a project for me, and I feel good about them... the first one is really about self-compassion, and the second one is my reminder that EVERY little step matters.

I realized that my thinking in terms of accomplishments needs adjusting. Big things are easy to notice - it was a big thing for me to go to the optimist club evening picnic, and cool that I could do it - a few months ago I'd never even have considered it.

Small things - like making these 2 signs - ALSO matter, and I need to notice them... even really small things - like dividing up a piece of paper, or sharpening several colored pencils, matters... it ALL adds up.

An FB friend of mine told me about a rare diagnosis that she finally received that gave her her life back, and I realized that for me, recognizing I have PTSD Anxiety, and working with a new therapist to slowly embrace it, is what *I* need to do.

Dealing with my PTSD Anxiety is hard - I know the goal is for it to become easier, more benign, but it's NOT easy right now... one of the elements - Worry exposure (see the link below) is really hard, uncomfortable, and anxiety provoking even done in small pieces... Cutting through my negative thinking, as I wrote about already, is also very challenging.

I have to put my trust in, and work with my therapist, just as I've done with Feldenkrais and vision therapy.  I've got to remember that my PTSD Anxiety is the key, for me, to making progress with those other therapies. One. Small. Step. at. a. Time... To improve my life as much as possible.
Photo credit - Ron

worry exposure -

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August 3rd, 2018 Not-so-small-for-me accomplishments

I told Christina that I didn't post the really small stuff, and she asked "why not?".

ALL the small stuff's the building blocks for slightly bigger stuff, etc.... I told her it feels like a tug of war inside me sometimes - my PTSD Anxiety vs a healthier me that's emerging, and she thought that was a great metaphor.... anyway, I'm going to try really hard -  working against my  ingrained negative thinking born of my PTSD - to come up with 3 good things each day...

There's actually more here - I'm catching up, and surprised myself... a couple are mainly a vestibular or visual challenge, most are a combo -

1) watched a music vid with some moving lights

2) made a phone call after coming home from CBT

3) tried on 2 blouses, decided to donate, then put my top back on
4) sometimes I read a one line email instead of listening to it
5) snipped 2 or 3 dead blooms off a houseplant

6) talked to my daughter while she paces back and forth

7) sat on a bed, put on my readers, and looked inside a jewelry box to find 2 pairs of broken earrings (Ron and Cara went to a jewelry store - they're now repaired)

8) crouched on the floor, and leaned against a bed to talk to my daughter

9) Edited some of this ON my blog (not cut and pasted)

Coming up with this list made me anxious, which I now understand is my PTSD Anxiety showing up, telling me to back off, stay stuck, comfortable.

CBT (cognitive behavioral therapy) is more than positive thinking, but positive thinking IS a key element. I want to retrain toward the positive, so I'm going to keep doing this.  I feel like I'm in surprisingly foreign territory, but I know I need to embrace my PTSD Anxiety, to move forward, improve the quality of my life.

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