July 4, 2019 Enjoyed my morning, ready to keep moving

I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-) I handled the ...

Archive for July 2018

July 31st, 2018 Progress Report - "Never too late to learn"...


I saw Dr. Margolis (developmental optometrist) for the first time in a while for a Progress Report (PR). He was happy with my progress, and I said it felt good, though I'm still nervous about my progress.  I realized it's the first time in a while I could say definitively "yes, here's what's better." He also commented that dealing with switching between far and near glasses was a more sophisticated problem.

He still wants to work on improving my convergence. We also talked about working on what he calls visual motor coordination, as well as some issues that will help me be able to socialize more - he specifically said he understands that I'm isolated. I told him about working with a new CBT therapist, having figured out I have PTSD Anxiety, and trying to re-approach however far I can get with reading... I said I knew the only way to find out was to try, to which he said "that's right... good for you...".

Finally, he emphasized an approach I liked re sensitivity... he said it's all about pacing, and that for someone who's sensitive even a second or two, or a minute (depending on the activity) is effective, has an impact.

I keep thinking that I like what one of his convergence-testing tools says - you can see if when it's in front of your face - "Never too late to learn".

I went ahead and made my next PR appointment - I caught myself thinking "Oh, I don't need to do that right now," and then I said to myself "yes, you do, because you're still working, and he'd tell you if he thought there was no more possibility of improvement. So YOU need to believe in yourself!".

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July 27th, 2018 Time for a positive shift...


I was posting something positive on my Visible Person, Invisible Problem FB page - the public page I have for this blog - and I had an "Uh oh" feeling... I realized this has happened before, and the thought that floated through my head was
"wait, if I post positive stuff, will people think my life's easy? will they understand what it's like living with my disorders?". 

I had a hunch I was onto something, and my next thought was - 
"well, the name of the page is Visible Person, Invisible Problem, and my pic shows me with my tinted glasses...". 
Then I thought "actually, people don't really fully get what they don't experience..." - this used to really frustrate me, but I now realize we're ALL that way... we can try to imagine, empathize, but it's not the same thing as living an experience, and that's OK.

I felt like there was more going on, and here's what came next - "is this really about other people, or me? My PTSD Anxiety throws in the negative thinking, saying "hold up, you can't try stuff, you can't focus on anything positive, that's risky... nope, I'm gonna rain on your parade...".

But really?? I mean, it's been nearly 7 years since I got sick, so exactly WHEN am I supposed to let myself have a good moment?  I realized I've gotten used to, familiar with feeling bad, so feeling good, positive feels oddly strange... in fact, writing and posting this piece, showed me just how ingrained my negative thinking has become.

I can ALWAYS  find frustrations and challenges if I look, but it's time for a different perspective - so I thought "OK PTSD Anxiety, here's the deal - I have loved ones who have Bipolar Disorder, and Anxiety, and I know now that I have you, just like I have vestibular and vision disorders".

I've said to myself "they have a mental illness, but it's not who they are"... I want to take that approach with MYSELF... there has to be more to life than feeling bad about stuff so much... it's time for a paradigm shift in thinking - time to choose, REALLY choose positive. 

Thinking this way feels hard - I've gotten very used to, in recent years,  feeling bad.... taking credit, noticing, FEELING the positive is challenging, oddly scary and uncomfortable. It's change... I want to get used to this choice.  I want to give my brain, my neurological self positive vibes... bit by bit, I need positivity to grow.

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July 21st, 2018 Feeling, letting go, reaching out....


In 5 weeks my daughters go back to college... I realized that part of my depression was about not letting myself feel sadness, giving myself time and space to feel change... I've been a mom for 23 years, and I'm really proud of my daughters - the wonderful young adults they're becoming... I enjoy their company, and it's exciting to see them discovering themselves.

I love being a mom - even when it's difficult, I'm in my element... I'm also sad that they're growing up... I miss them needing me the way they used to... I know they still need me, but it's changed, changing, and change is hard... I was a stay-at-home mom (I eventually worked part-time out of the house)... I don't really want to hold them still in time, and yet I want to hold on to each moment.  More change is coming, because that's part of life.

So I've been thinking about the concept of goals - and what is achievable for me.  Given my disorders, I can't wait for an opportunity to float out of the sky for me... I need to be proactive.

I'm interested in advocacy - I've learned a lot about vestibular and vision disorders. I talked a bit with Ann (VT), who's going to talk to Dr. Margolis (developmental optometrist)... I also posted in the ambassador group on Facebook to Cassey, our liaison with the vestibular disorders Association - VeDA, that I want to talk to her. 

I can't do - both because of the vestibular and vision issues - a lot on the computer... maybe I can continue to improve with phone conversations, and maybe I can somehow work on in-person stuff.


I really don't know what's realistic for me - energy/pacing, sensory stimulation, are just some of what I need to take into consideration... I know from multiple experiences I've had that my system is sensitive - I need to honor that, and I know that stress makes people more vulnerable to illness.  I ALSO know I'm slowly getting stronger.

It can be hard to figure out the difference between my PTSD Anxiety kicking in vs. real limitations, but I think as I'm trying to do more, I'm starting to figure that out better.  I also remind myself that the whole point of doing my therapies is to improve the quality of my life. 

So I want to let myself feel, AND I want to try to figure out what social stuff I can work towards.  The feelers I put out to Ann, and Cassey are good steps... I'm reaching out, and that's good.  I'm proud of myself that I can acknowledge that it's good.


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July 12th, 2018 Self-compassion, work/effort, and live in the present...


Sometimes when one of my therapists says "you've been working so hard" I feel a prick of self-doubt... I've told myself that I don't need to be the perfect rehab patient, but still - "have I worked hard?  Could I have done better?"

Here's what I said to myself -

"You're human, fallible... you KNOW no rehab is a straight line... ALL of your online friends have had bumps and twists and turns just like you... so have you done the best you could with what you had at the time, MOST of the time?
Yes... and here's the kicker - if you HAD had the perfect rehab experience, would you be in a different place?  maybe, but maybe not... there's no way to know... 
What you DO know is that it's not accurate to say that you definitely would be in a better place if you'd done a "better" job at rehab - whatever "better" really means... AND it's not helpful...
What IS helpful is the present moment, because that's what you know."

It's ALSO helpful for me to realize
1) how incredibly hard I can be on myself.

2) that the depression I fell into made me feel like I could NOT do better, like "what's the point?" which fed right into my Anxiety/PTSD.

Time for some self-compassion...  maybe coupled with the clarity I'm gaining, and the work I'm actually doing, I'll see how far I CAN go.
In the present, I ALSO want to enjoy what I have now... pets and all.




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July 7th 2018 Awareness, owning, channeling emotional energy...


My mom emailed me, telling me she'd read through my June blog posts, and asking me why all the self-blame re my illness... her words -

"... why do you blame yourself for getting sick, for crappy doctors who didn’t diagnose you?"

It's a good question, so I thought about it, and here's what I realized -

1) My health issues impact not just my life, but my husband Ron's, and my daughters' as well, which is sad, lousy, etc., but that STILL doesn't make it my fault. 


I would NEVER wish my health problems - vestibular migraine, and a vision disorder - on anyone, and sure as hell would never CHOOSE them for myself!  The very idea is preposterous.

It's valid for me to be angry - REALLY angry - that I didn't get diagnosed (and treated) fast enough... It's valid for me to be incredibly frustrated about my limitations, and really sad... I'll never know for sure how much better off I'd be if things had been different, but I'm pretty sure I've paid a high price.

I need to OWN all these feelings... but at some point I need to put all that emotional energy into healing, doing the best I can with what I have NOW... that's what ALL my therapists would want.


2) When I'm really tired, or trying something a little bit different or new, my Anxiety gets triggered - I'm more likely to go down my frustrated-which-turns-into-self-blaming, negative, anxious, "uh oh, am I gonna have a set-back?" etc. road... the uh-oh, set-back Anxiety/PTSD is never very far away... 

So I need to breathe, do the self calming sensory stuff that Joyce has taught me, think about everything I've accomplished - what I've actually done THAT DAY, and keep going... yes, keep going...


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July 3rd, 2018 My reminders - what they mean to me...















The pics you see are what I see, when I'm sitting listening to audio books... there's also (not pictured) a desk with my Talking Books audio player, my iPad, some photos, and a desk with my computer.

The big sign is the newest... I wanted reminders... here's what they mean to me -

1) Breathe - is my breathing too shallow, tight? Time for diaphragmatic/belly breathing.

2) looking soft is a reminder re my vision disorder -taking in my periphery, not getting tunnel vision - unless of course it's appropriate.

3) small pieces - each bit builds on another.

4) celebrate EVERY success  - no matter how small - I'm working on giving myself credit.

5) do the best you can in THIS moment - do the best with what I have right now.. my physical and/or emotional well-being, info, experience in the moment... Thinking this way, feeling centered in the moment, is definitely a work in progress for me.

6) keep going, trying - this is really hard... I'm trying, could be something small, but feels tough - to tell myself "OK, you're going to try...".

Writing this piece, I realized how much I over-think, over-analyze, and judge myself. I need one more reminder, in a special spot all its' own - it will read -
"Be patient, compassionate with yourself". 

Here's a definition of compassion -
"sympathetic pity and concern for the sufferings or misfortunes of others" -
so having self-compassion is basically concern for your own suffering and, hopefully, healing.

Photo credit - Ron


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