October 24th, 2018 My timeline of progress

I decided to do a timeline - an interesting cognitive exercise, as well as visual - Early Sept., 2011 - wake up to terrible VERTIGO ...

Archive for 2019

January 19th, 2019 My 3 therapies... where I can improve

I don't know how far I can go with my 3 therapies, but I have a feeling I'm going to find out in 2019... Why? because I'm challenging myself more, trying more - that means finding out what works, & what doesn't work.

I have to deal with disappointment, as well as success - which actually is pretty much how life works, right?
My stamina is slowly building - I'm slowly getting stronger... my thinking is gaining clarity - I'm understanding my "flavor" of Anxiety more & more.  It makes sense to me that I'm seeing improvement because it's only been the last year that I've had the tools to work on these.

My automatic thought is "why did it take me so long?" & then I think "because it was a process - give yourself credit that you kept looking, & DID reach out, & now you're doing this hard, important work with Christina."

Pre illness, I was on the other side of the volunteer fence - looking for reliable, caring, competent people... I've gathered a lot of info - I have a better idea of what's out there... Now I need someplace that is able to be accommodating to someone with disabilities.

Maybe I'll revisit this idea again, but right now is not the right time for me - I'm not ready... will I be able to do something more than the VeDA calls, & post sharing I do now?  Will there be someplace that can accommodate, that's interesting for me, that I can handle? 

I don't know... for now, I'll focus in my 3 therapies, finding - by trying - areas I can still improve.

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January 18th, 2019 gotta keep going...

I left a message for this organization -

I called my local petSmart store, & this time was told I need to come in and fill out an application, which they give to the people at the cat adoption center - sounds like it operates completely separately from the store…

Feeling a bit discouraged - not optimistic that it's realistic that any of this volunteering with cats - or something else - is going to work, but at least I'm looking into it – better than saying I didn't even try -I never would have even checked it out once upon a time.

I also did something yesterday with Ann in VT which has to do with seeing things in 3-D, which still stubbornly does not work - I think my body's reacting to it a bit today, & maybe it's time to say that this piece just doesn't work…

So this is a day to remind myself of the things I'm doing that have worked, & it's not my fault that this happened to me - lousy yes, my fault no... Keep going… Keep going.

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January 17th, 2019 Sleep - reach out if you're having trouble!

Yes, SLEEP! In my quest to de-stigmatize, I wanted to share this - it's been 1 yr now that I've been taking a med that helps me sleep.

I use 2 weekly reminder holders for all my meds, similar to what's pictured.

Not surprisingly, my PTSD anxiety flares up at night because that's when I got sick, & insomnia was a thing... sleep - so fundamental to good health - is supposed to be this natural state we easily slip into, but for many it's anything but easy...

The med I take is NOT habit forming - & is also a good antidepressant.  I started out micro-dosing because of my extreme sensitivity to side effects - I'm now on a normal dosage, & have been for a while.

I'm convinced that one reason I'm able to improve in a variety of ways, is that I get MUCH needed rest at night.

If you have trouble with sleep, talk to your doctor... discuss with a trusted family member or friend...  It's worth it!

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January 15th, 2019 Investigating... it's all in the trying

I did this "?" today because I'm in investigating mode - & I don't know what's going to work, or even IF something will - neither does Christina.

Julie Andrews came up today with Christina - we talked about the amazing voice she used to have, & how she managed to rebuild, re-create her life, how it must have been a process for her... I mentioned Michael J Fox, who didn't go public about his Parkinson's until 7 years after his diagnosis.

A lot of people write books once they've come out the other side of something major in their lives, & they have an ending of sorts... I'm sharing some of my process - I don't have the ending yet.

Here's my notes as I reviewed what I've done so far... not being a perfectionist, I decided to share my 1 and only draft -

Volunteering that for various reasons isn't a good fit, what I'm doing at home, & 2 possible ideas - one at our local shelter (I love cats & dogs), & one about neural rehab - specifically vision.

I'm fascinated with neurological rehab - something I knew NOTHING about prior to getting sick, & I remembered Dr. Margolis talking to me - probably at least 3 yrs ago - about some kind of interviewing... I said I was interested, but then my depression & anxiety got in the way.

So now I'm thinking "well, what about that? what about learning more about this vision thing?" I have no idea what I can do - I have to reach out to Ann about this, & Dr. Margolis.

I DON'T want to look back "X" number of yrs from now, & say "I didn't try"... there's lots of little ways I'm pushing myself now, challenging myself.  It's frustrating when lots of stuff doesn't work, but I don't need LOTS of stuff to work - I just need 1 or 2.  

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January 14th, 2019 Yes - it's hard, notice EVERY positive, keep going!

I saw Joyce today - she pointed out some positives, encouraged me to keep trying... I also heard Christina's voice in my head sometimes... & so I did this sign today - I know Ann (vision therapy) will like it -

AND I said to myself "having to keep trying is hard, but it's what I have to do... & this is a GOOD sign... running the household MATTERS - it's part of what allows me and my hubby to still be living independently in our home - that's HUGE actually... I need to keep reaching out with phone calls - I can definitely handle those better than I used to... being creative is good, for a lot of reasons... and phone calls will help me feel connected"

AND in the end, I can allow myself to sometimes feel really down, but I've GOT to keep going... let myself register every single thing that's good, no matter how tiny.... FINALLY, remember there are others out there with their struggles... some of them maybe reading these words - we ALL have to keep going!"

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January 13th, 2019 one more year, still grieving, but still trying

Here's a picture of my beloved flute... truly, this beautiful instrument feels like a part of my body when I hold it, an extension of my arms, hands -

I wrote a piece a year ago "Speaking my truth, the depth of my loss," & it still resonates... I said at the end  "I KNOW I need to create some kind of life... but I ALSO need to feel - even on meds, and CBT -  the depth of my loss...".

These 2 ideas - creating some kind of life, & feeling the depth of my loss - will always be true... they're not mutually exclusive.

Sometimes the pain of my loss - how my life changed -is a deep, heavy ache inside of me... the loss I feel the most keenly is still about music... giving flute lessons, playing duets, trios, playing in a band... simply picking up my flute, taking out a favorite piece of music - & playing.

I also used to sing in our congregational choir - which I really enjoyed - but that's been taken away from me as well, by my illness. I can sing with Ron & my daughters for Chanukah, or sing Happy Birthday, but that's it. Better than nothing, absolutely, but a major loss.

I'm slowly coming to terms with the fact that this pain will never completely go away. It's the same as the loss of a loved one... hopefully over time, the pain, the grief will be less intense.

Part of that will come from talking about it.  I learned to play flute when I was 9 yrs old, took my first flute lesson in high school. I first sang in a choir as a college student - & I'm now 57. Nowhere in my plans was it "get sick at age 50, a life-changing kind of sick."

But that's what happened. I'm one of many, many people with health conditions that change their lives forever.  Forever isn't a word to be used lightly - just like the word "never" - but sometimes it applies.

And yet, if I'm honest, I'm still grateful to be alive, to be able to try... even though some days I don't really feel like trying, I feel like saying "the hell with it"... but on most days, I know I need to keep going, figuring out whatever I can.

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January 11th, 2019 Getting to know MY Anxiety, getting positive

Lists are useful - To Do/reminders, grocery, etc., & I'm finding that focusing on the positive is really hard for me, BUT doing lists just doesn't do it for me, sooo, here's my latest drawing - it's a BIG "plus" sign with some of what I've done.

I always thought that having Anxiety meant FEELING anxious - & a lot of times it does... but inaccurate thinking - what are known as cognitive distortions - is ALSO Anxiety (it's how Anxiety works on your brain).

Here's a couple links - 1 for an article, & 1 for Wikipedia -

Here's the messed up thinking I think I get into most frequently -

1) minimizing the positive - the opposite of paying attention, giving my/yourself credit

2) avoidance - anxiety makes my/you want to avoid

3) catastrophizing - jumping to worst case scenario "Something bad's gonna happen," which tends to go with "what if?"

4) personalizing  - it's my fault - i.e. because of my illness, as opposed to "I didn't choose this, & it just IS, & I'm doing the best I can"


January 9th, 2019 Feldenkrais - neurological rehab is powerful

My Feldenkrais work with Joyce, is important, & I'm constantly learning from it, so I thought I'd share some of what I've learned -

the fundamental idea of Feldenkrais is that improved movement - flow as opposed to rigidity, stiffness- allows for improved balance

if movement hurts, do less, & build up gradually

if your symptoms (headache, dizziness, etc.) were too much, do less of the activity, but still try - something I need to keep reminding myself. Still might not work, but try,

everything is connected, so try moving something close to what's not moving, &/or hurts - I recently did a pelvic exercise & it helped my head

one side learns from the other side... do something with the arm, leg, hand, etc. that's moving more easily - neurologically, your brain will transfer the info to the other side

think really small movements - it's easier to notice subtle differences, & when it comes to balance, subtle matters

do things in a neutral position, that gets you out of your habit - try lying down... I've noticed what muscles move when I do something as simple as putting on hand lotion, when I do it lying down...

You can experiment with movements when lying down, because it lessens the vestibular load

if you're sitting, improve your posture by sitting up from your lower back/pelvis - your shoulders will naturally follow, as will your head, & your gaze, & your breathing (opens your chest slightly) - & breathing is SO important!

Some of these concepts apply to vision and cognitive behavioral therapy as well. 

Neurologically everything is connected!

If you think Feldenkrais would be helpful for you, give it a shot.

My friend Leora, who first told me about Joyce, told me something that has stayed with me "even if it doesn't feel like she's doing much, she is - this stuff is powerful..." words to live by for ANY neurological rehab.

This is a link to Norman Doidge's fascinating book, which has a great chapter on Feldenkrais -

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January 8th, 2019 Past "hijack/Anxiety" mode, to the living, thinking human...

Being frustrated, sad, angry about what happened to me is not just OK, it makes sense... but putting down roots in anger, etc. isn't healthy.

So, I did this sign - a BIG sign, with LOTS of colors, because I don't really want to say "OK, this is enough..." it's tempting, because trying is hard, scary.  

The PTSD Anxiety's not going to disappear, but Christina gave this analogy -
my automatic response/thought now is Anxiety hijacking my brain - "oh my God, something bad's gonna happen!" just like when you call a big company &  get the automated system.

My goal is to respond "OK, yeah, there's Anxiety again, but I'm gonna keep going," get past "hijack" mode, past the automated response, to talk to the live human - to think, reframe my response.

I take everything I know about my vision & vestibular disorders, & PTSD Anxiety, & say "OK, what's something within my reach to try?"... I remind myself that when I'm actually in a situation that requires accommodation, I generally figure it out - do the best I can.

It takes time to make anything of real value, of importance, to learn how to do something really well... I got sick 7+ yrs ago, but counting ALL my diagnoses, & everything I need in order to make progress, I've only been at this for a year... & I've only been doing exposure as part of my CBT work with Christina for about 6 months... so baby steps... keep going... keep trying.

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January 6th, 2019 neurological change - it IS possible

Real, lasting neurological change (a brooaad category - I mean, we're talking about your brain, nervous systems) is really hard work - & is frequently complicated...  but it's possible if -

1) you're motivated - I believe you have to REALLY want it
2) you own the process,
3) it's done gradually - being overwhelmed doesn't work
4) you have a support system (finances are part of this)
5) you REALLY understand progress won't be in a straight line
6) you're not aiming for perfection
7) you have/acquire the necessary tools (& I don't mean a screwdriver or hammer LOL) - therapies, meds etc.
8) you're prepared to work hard
9) you're prepared to be patient, & persevere

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January 4th, 2019 be my own cheerleader

I've got a big outing challenge tomorrow, so I did this... I realized it's okay - even good - to cheer myself on, as I try to DO, with my invisible disorders :-)

I have to be my own cheerleader - believing in myself is even more important than others believing in me... I've had these cray pas for months, & finally used them... Different feel than pencils, but I like them - you can make a really BOLD statement... so I did :-)

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January 3rd, 2019 My sneaky, stealthy buddy - Anxiety

My Anxiety's just as real as my vision & vestibular disorders, & just as invisible.

here's my latest sign -  

I had vision therapy today... Ann & I agreed that while 2017 was a lousy year, 2018 was much better, I'm making progress, integrating all my therapies into my life... afterwards, I thought about how my anxiety works - sometimes I don't FEEL really anxious, but then I realize I'm going inward - the way Anxiety tricks my mind is so tricky - stealthy - I'm still in the process of understanding.

So, going back to my goals of flexibility & stamina - what are some ways to build these, & not feel like I'm letting Anxiety win?

1) I've done 4 days of going out in a row... could I try for 5?

2) could I go out the day after VT? This is a definite anxiety trigger, but I'm tired of making choices based on Anxiety - on what MAY happen

3) could I eventually go out more than once in a day? I actually DO do that - I go someplace, & then walk with Ron. Doing 2 outings plus the walk is BIG - but maybe something to work for.

4) keep on building my activities at home, what I do on a therapy day - remember that everything counts!

My anxiety's trying to get in my way -  thinking about what I can handle. There's a balance between acknowledging my disabilities, & trying my best to live a full life, & my Anxiety tells me to be very, very cautious. But the only way for me to know for SURE is to try - not with a 10 on the Exposure Richter scale, but still try.

The more I realize about how Anxiety works, the better - I can have more awareness... talking with Joyce (Feldenkrais) about goals is valid - reviewing what I'm doing at home, as well as with her, so I can keep moving forward.

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January 2nd, 2019 Being present & planning can co-exist, or "what's in my future?"

I'm sharing this piece because I thought that it might be helpful for others - not just myself - to see my thought process.  That said, neurological rehab is very individual -something I remind myself of frequently.

Part of what makes my life full right now is my therapies, but I've also said that therapy is a means to an end, not an end in itself... therapy shouldn't become something I do because I'm used to it.

As 2019 begins, I'm thinking that being present, & thinking about the future are not mutually exclusive... I can't look into a crystal ball & know for sure how my life will unfold, but that doesn't mean make NO plans at all.

Volunteering - yup, still thinking about that - I used to think that volunteering had to be "out there," but maybe not, right now.  My main goal really is to do something that feels valuable. I don't want to do anything that's on a tight schedule - definitely not ready for that.

I'll remind Cassey at VeDA about sending me new member calls.

Maybe I could do something for a local organization - like our local Shelter (Orphans of the Storm - very close to our house. Fleece blankets for cats & dogs? 

Therapy - it feels like talking with Ann & Joyce about parameters of my treatment makes sense. 

Joyce, my OT/Feldenkrais practitioner was the first person who provided the beginning of my road to recovery, & working with her is not only for balance, but also sensory work - she's also trained in the Masgutova method (  

Vestibular & sensory issues are complex, but it's relevant & valuable for me to think about what & when I transition to in my work with her.  I don't know what kind of support I will need long-term - given my vertiginous migraine disorder - I'll only find out by experimenting.

Ann - vision therapy -  vision is a multilayered, complex system involving so much... but again, what are the parameters of my treatment at this point, and what kind of support will I need long-term?

Working with Christina - cognitive behavioral therapy - will at some point moving to support, but I don't think it's time for a discussion about that yet - I'm still in my first year of treatment.

I'm fully aware that I'm extremely fortunate to be able to think about having long-term support.  I truly wish everyone was in this position, especially because it can take a long time to pull all the pieces of a successful treatment plan together.

thanks to my friend Marla for the above quote

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