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 November 2018

November 30th, 2018 Info re treating Anxiety

Info links re treatment of Anxiety -

1) the site for the center where Christina works - even if you don't live in the Chicago metro area, this will give you an idea of what to look for in your area.

2) good basic info re CBT - many people oversimplify this therapy modality, & perhaps because of this, believe it is more short-term... like any therapy, the length depends on the individual, what they are being treated for, etc.

3) understanding various cognitive distortions is important, takes time, & once there is awareness/understanding, putting these into practice takes time - a process

4) Also known as worry exposure, this is challenging - & starting with whatever ranks for you as a 2 or 3, as opposed to a 10, is much more likely to be successful

A good therapist will look at the big picture of your life, & help you apply these ideas... I'm finding it to be helpful, & challenging.  For me, CBT is more effective because I'm also under the supervision of a psychiatrist.

One goal I left out of my previous list - to, as much as possible, not let Anxiety win.

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November 29th, 2018 Give myself a break, AND give myself credit

I remember about 18 yrs ago calling my then pcp because I was dizzy when I lay down. When I moved around I was OK...  he said it was an inner ear infection, that it "happens all the time to people" & would go away in a few days... he explained nothing about balance... whether he was right, or I just got lucky, it did go away & I thought no more about it.

When I woke up to HORRIBLE vertigo in Sept. of 2011, I had NO idea just how much I had to learn, not only about balance, but about self advocacy.  Self advocacy isn't just asking for what I need, it's also doing my best to explain to Dr. Margolis - or one of the other people I work with - what's going on with me.  Trying, figuring out what will help my unique, neurological self to make progress. This whole experience has been, as Dr. Mirsky, my psychiatrist, often says - a process.

Sometimes it's been quite a struggle.  I now understand that my anxiety - rooted in PTSD from the night I got sick - tricked me into thinking progress was impossible.  Anxiety & depression became my constant companions.  Anxiety & depression can be SO sneaky, creeping in almost imperceptibly, & tricking your mind.... ugh... I sure as hell didn't CHOOSE anxiety & depression, any more than I chose MAV or CI!

I wish I could have put the pieces together sooner, but  there was SO much to put together, to understand. It's easy for me to forget just how much of a learning curve I've been on - beating myself up for lost time isn't helpful.  I know if someone else shared this story of mine, if it were theirs instead, I'd say "it sounds like you've been doing the best you can - give yourself a break...".

Yes "give yourself a break"... & give yourself credit that you DID finally reach out for help, & now you're working hard - pieces are still coming together, falling into place. As Dr.  Margolis said "good stuff...".

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November 26th, 2018 Resilience

When I'd hear people say "focus on the positive" I'd think "that's just stupid Pollyanna crap - that's not reality!"

I finally realized focusing on the positive doesn't mean ignoring all the difficult, messy stuff.. it means paying attention to, dwelling on whatever is in some way good

Sometimes finding the positive is like getting to the other side of a storm...

Looking outside today at branches of  bushes & trees, all bowed down from the weight of the heavy snow, I thought about resiliency - what survives, and even thrives is what bends, what is flexible...

For people, it takes a lot of strength, determination, resourcefulness and patience, to be flexible, & to rebound... but I think it's worth it.

I want to try to be the growing thing that has resilience.

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November 24th, 2018 Owning, having goals

For the first time in a long time, I'm actually looking forward to seeing Dr. Margolis next week... he's really nice, but my anxiety & depression made me want to avoid.

Now I have some idea of what I'm gonna talk about, & having goals doesn't seem ridiculous or far-fetched

1) I want to work on flexibility - which on a systemic level is about much more than scheduling

2) I want to work on endurance/stamina

3) I want to work on socializing

4) I want to learn to use an iPhone - that's a huge step for me... I've been phobic about them, so I've had a basic phone for 6 yrs - yup, the same phone - I'm ready now for a smart phone

5) other - I don't really know, but I want to leave myself open to possibilities

These goals aren't all new, and they're all multi-systemic, but actually SAYING they're goals I want to work on feels very different... Saying them means I'm really owning them... I can HAVE goals - I don't think owning my MAV, CI and anxiety means I can't ALSO have, work on goals, even while being present focused.

It's one thing to do therapies, it's another when those therapies start getting integrated into my daily life - & in bits & pieces, I think that's happening.

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November 21st, 2018 Keep experimenting, relearning flexibility

Getting sick, and being flexible didn't work, & as I work thru the layers of anxiety & depression, I want to regain flexibility.

I used to be a lot more flexible, but when I got sick, and SO many things became more work, flexibility was very difficult - involved so much thought - felt like too much, & soon flexibility meant anxiety - my automatic thought became "Oh no, I can't!" - and that led to catastrophizing. 

Flexibility & vision therapy -
taking a day off, if there's an event I want to try,  makes sense.

Flexibility & activity
Trying different times of the afternoon to watch bits of my movies, to make phone calls to friends/family, to draw, to play our piano keyboard.

Trying means just that, trying, experimenting - some things will work, some won't. There's little bits & ways of trying - a 2 or 3, rather than a 10 on the Anxiety scale.
I'll do the best I can with whatever DOES happen... recent experiments have shown me I'll accommodate, and recover.

Tried (& required some kind of flexibility)-

Shabbat service - yes, but check ahead of time.
Adult Education (Cong. Sunday School) ditto above.
A matinee play with Ron - yes
musical - no
Chicago botanic Garden - yes
phone calls - yes

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November 16th, 2018 My depression & anxiety - recognition, progress

above, a verbal collage of activities I've tried, & I fill my time with now, not including my 3 therapies, which will eventually be support/maintenance.

Looking back, I see my neurological rehab (Feldenkrais, vision therapy) in 3 chunks -

1) after I got my convergence insufficiency Dx in 5/13- this was a good period

2) at some point, progress slowed, faced major disappointment re flute playing & sheet music, my daughters both in college... anxiety & depression grew -Depression is like a slow fog descending, clouding... anxiety makes me stuck.
3) fall of 2017, realized I needed help, started working with my psychiatrist Dr. Mirsky 11/17, finally recognized severity of depression and anxiety, then 3/18 started cognitive behavioral therapy -CBT - with Christina

April 2018 - ready for special glasses - huge step.

Nov. 2018, realize how long a process it is - with help of meds & therapy - to come out of depression, & feel like I'm starting to manage anxiety...

More days when I feel better simply about getting out of bed to start my day... With Ron's help, I buy new clothing, care once again what I wear, how I look... once again, making progress with rehab.

I realize I need to push myself out of the habits my anxiety & depression created.

Christina always has said I'm not going to change my automatic thoughts, it's my response that can change -

catastrophizing - i.e. "the taxi won't come, won't see me & will leave" becomes problem solving - "I have some control, I can call the taxi"

"I can't do this" becomes "I can try" -
Christina also says worry exposure - different for everyone - works when done gradually, so there's real possibility of success... start with challenge that's a 2 or 3, rather than a 10.

Not every part of every problem is fixable   try to distinguish between the two, & focus on what is fixable. Allow emotions, always.  And keep going. Be kind, gentle with myself - this process takes time... be very grateful for support.

NOTE - if you  - or someone you care about - are in trouble, seek help.

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November 15th, 2018 Acceptance & synergy co-exist, or Calling a taxi

I'd begun wondering if I was right about the synergy - and I looked up the definition -
"the interaction or cooperation of two or more organizations, substances, or other agents to produce a combined effect greater than the sum of their separate effects."

My mistake about my synergy - in my case, all my therapies working together - was thinking it would now be an even, upward slope - no more zigs and zags to my rehab.

Today I had to take a taxi to and from vision therapy - VT. I always get texts when the taxi is on its' way.  I was done with my session, and got the text. Then I saw a taxi driving back and forth right past the building.  My first thought was "Oh my God, it's gonna leave, I'll have to order another one, shit!". 

Then I remembered from a different taxi ride, that I'd figured out the driver's cell phone number is embedded in the text. My first thought was "I can't do this" but then I just kind of DID it -  I took out my phone, accessed the text, and called - he picked up, and I ended up in the taxi.

I was still anxious and stressed, but also a bit surprised that I had done it.  I said to myself "that was hard, but you did it, & now you're on your way home." 

There ARE gonna be times - like the Shabbat service with the video clips - when I'll be too challenged, and have to accommodate, and say to myself "yup, this is too much for me right now."  But there will ALSO be times when I'm challenged, and CAN do it.

Acceptance and synergy are NOT mutually exclusive.  Neurological rehab is never a straight line. I know Dr. Margolis (developmental optometrist) reads my posts - he actually told me - but I'm glad I'll have a chance to talk with him soon, as I continue moving forward. Making progress still feels a bit scary, but it also feels good.

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May 10th, 2019 Migraine trigger info - food, plus

My diet takes work, & part of my work with my CBT therapist, going forward, will be to figure out any ways I can be slightly more mobile, given my dietary constraints. 

I have a lot of dietary restrictions, & I adhere to my diet because my balance, and my ability to think are dramatically affected by migraine food triggers.  I have some other health conditions which impact what I eat, and again, I am disciplined purely because I feel so much better.

The good news is that in addition to feeling better (actually better even than prior to my migraine diagnosis), my diet is extremely healthy.

MSG isn't always called MSG - or monosodium glutamate. It is also known as:

hydrolyzed soy, wheat, corn, or casein protein
Sodium caseinate
yeast extract
yeast nutrient
autolyzed yeast
Textured protein
calcium Caseinate
yeast food

Spices/herbs - so here's the list I know of that are migraine triggers -

salt - if too much

The good news is there's plenty of spices/herbs that are fine - a few of the ones I use a lot -

crushed rosemary

and I love olive oil.

NOTE - Clarification - 

to clarify in case there's any confusion re my Migraine diet trigger info - I take the Johns Hopkins list (see link below) to be a guideline, & the specific info I put in my post re MSG & spices/flavoring were given to me by reputable sources back when I first was diagnosed with MAV. I shared exactly because it's difficult to find this very specific info, & helped me tremendously... that said, someone else who isn't as sensitive might not have trouble with 1 or more of them.

Here's a link to VeDA's info re Migraine associated vertigo - if you scroll down you'll see information about diet - https://vestibular.org/migraine-associated-vertigo-mav

Here's a link to a pdf from Johns Hopkins, which has a great deal of info - https://www.hopkinsmedicine.org/otolaryngology/_docs/Migraine%20patient%20handout.pdf

Here's a link to a comprehensive list regarding migraine food triggers - https://my.clevelandclinic.org/health/articles/9648-headaches-and-food

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November 10th, 2018 Acceptance, & living now

Giving space to my anger (written 9-24-18) is important, as is letting myself feel sadness (one of the pieces that addresses this written 1-14-18)... I've written a lot about trying - also very important - it leads to more self-confidence... but I feel like there's one more piece - acceptance... trying & acceptance are not mutually exclusive.

Acceptance, to me, is about being at peace with my situation... peace, to me, means saying
"yes, what happened to me sucks, I'd never have chosen it - I guess you could say it chose me - and right here, right now, is the life I'm putting together for myself... I don't know what the future holds - I'll do the best I can with it as it happens... but here's what I'm trying to create with the MAV (vestibular) & CI (vision disorder) that I have - much improved from when I was first diagnosed, but still there..."

I'm tired of getting so frustrated, so often... maybe if I say "yup, this (name a symptom, limitation) is because of my invisible disorders - neither of which are my fault - & I'm doing the best I can to live my life," frustration can become like anxiety - something I notice, but not something that seeps into my day, then sucks my energy.  My energy needs to be for other things - the trying, the living now.

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November 9th, 2018 Thinking logically about VT

Vision overlaps with SO much - cognitive processing, eye gaze switching, tracking, figure ground (being able to make sense of multiple elements you see), vestibular ocular reflex (image stabilization), depth perception, and I'm sure I'm leaving stuff out! 

I'll have vision therapy (VT) with Ann next week, and then I'll see Dr. Margolis (my developmental optometrist) at the end of the month. 

Christina (CBT -cognitive behavioral therapy) is very helpful, and has learned about vestibular and visual systems, and disorders.  But it's accurate to say that Joyce (Feldenkrais - balance), Ann and Dr. Margolis understand much more. 

Anxiety/avoidance is not a good reason to stop - as in "doing VT makes me anxious" - but doing VT indefinitely isn't either.  I need to talk with Ann, and Dr. Margolis about my future treatment - "what makes sense for me to work on, that's specific to VT? What frequency of sessions?". 

Where do I want to put my energy/efforts moving forward?

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November 7th, 2018 Trying more, & more, big & small

I decided it was time for another reminder to myself of what I've done in recent months -

What I've reclaimed-

1) walking our dog by myself
2) dealing with laundry on my own
3) watching movies
4) getting to appts on my own by taking taxis
5) going to a local matinee theatrical production with Ron
6) doing more in person sessions with Christina
7) trying to be more flexible, telling myself I can handle it, manage my MAV, CI AND anxiety

These are all pretty big. There are smaller ones as well -

1) being able to vary the play I do with Molly to keep her engaged
2) organizing the clothing in my drawer
3) experimenting a little bit when I play our electric piano keyboard
4) touching the dirt in houseplants, while holding the watering can in the other hand, to see if they're dry

5) letting myself be in "I'll give it a try" mode more often
6) handling occasional phone calls - stores, Ron, etc.

Some of what I'm still working on -

1) distinguish between problem-solving (positive) and ruminating (not so much), more doing -
2) building stamina
3) connecting more with friends/family by phone

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November 5th, 2018 trying to describe my MAV experience

I put this together to help my parents & Ron understand my MAV - Hopefully this info will help someone out there, so I'm sharing -

Migraine associated vertigo, MAV, like a lot of chronic illnesses, has a lot of variation.  Key to understanding is that many people, like me, have symptoms WITHOUT conventional migraine.

MAV is a Dx that people get when a bunch of other stuff is ruled out - that's why I had all that testing years back.  Ménière's disease is another Dx like that, but there are some key symptoms typically due to Ménière's that I've never had.

Anyway, unless I'm very tired, the only time I get conventional migraines - pain - is from food triggers... I'm textbook, so when I stick to my diet, I seldom get traditional, conventional migraines.

The main symptoms I get, which have always been difficult to explain, are

1) sensory overload - this is usually the precursor to brain fog... it's NOT a migraine in my head, it's more of a body sensory experience... when I take a break from light, and sound, my body instantly begins to feel better.

2)what some people call "brain fog" - difficulty thinking, processing info

3) some vestibular dysfunction - usually experienced as disequilibrium - feeling off balance, though sometimes I get dizzy.  When I can give myself a break, I feel various signals that tell me my vestibular system is recalibrating (for example, a kind of ear crackling).

4) sound sensitivity - hyperacusis - which is not the same thing as a migraine.

5) fatigue - dealing with all this makes me, not surprisingly, tired.  Again, taking a break, doing some breathing, helps.

6) If I'm really tired, if I have a great deal of exposure to light/sound, I might get the beginning of a traditional migraine.

These symptoms are not usually as distinct as how I've laid them out here - there's typically overlap.

It's impossible to completely distinguish neurologically between the visual and vestibular - literally very closely linked inside our heads.

This is why I've never pursued migraine meds - I'm one of many people who has symptoms without the actual conventional migraine headache.

I think it's cool I could write this :-) it's a better explanation than I think I've ever given in the past, to something that's hard to explain.

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November 2nd, 2018 Living with, managing, my MAV & CI

Definition of the word chronic -
"(of an illness) persisting for a long time or constantly recurring."

I have migraine associated vertigo, which is a chronic neurological condition.  I also have convergence insufficiency, an eye teaming vision disorder, the severity of which was brought on by my illness.

I got sick in Sept. of 2011.  I talked recently with Christina, CBT (cognitive behavioral therapist), about the difference between getting a kind of sick that goes away, even if it takes a while, and having a chronic illness. 

Management can be challenging when I can't control the variables that can bring on symptoms - dizziness/disequilibrium, sensory overload, cognitive processing difficulty, etc. - and this can mean my energy threshold is lower. 

Management at home, particularly when I can control the noise, light, and general busyness of my environment, is easier.  My energy/stamina is decent - though I still have to pace myself.

It's easier when I'm someplace my body has learned - a space, people, etc. - that has become familiar - as opposed to completely new.  When we got our kitchen floor replaced 2 summers ago, it took me about a month to learn the new, porcelain surface - very different from the old linoleum. 

Challenging myself - whether on purpose, or not - is more likely to bring on symptoms.  So quality of life, while living with my invisible disorders, is not just about my neurological rehab, but self-management.  Asking for accommodations if/when possible, and doing the best I can in the moment.

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November 1st, 2018 Audio tools

I can read brief sentences, and do a bit better with my own writing - comprehension's easier because I know what I said - but reading is still a major challenge.  So, I rely heavily on these tools -

1) Google Translate - you copy and paste text in - up to 5000 characters now, and click on the speaker icon... it's a computer voice, but improved even over 5 years ago.

2) Audible.com - this is thru Amazon - there's a $14.95 monthly fee, but you get credits, so I've never paid more than my monthly fee, because I've only needed my credits for the books I've gotten... I listen to these on my iPad.

3) Talking Books - http://www.ilbph.org/ - this is the link for Illinois, but it's available nationally... I needed a doctor's note when I first got this, not sure if you still do, but worth it - loads of great books, all used on a really easy, special Talking Books Player... Wonderful readers - many are not names you'll hear about in the media, but they do a fantastic job!

4) choice magazine listening - http://www.choicemagazinelistening.org/

Another one I needed a note for, but worth it - I get a cartridge, which I use in my Talking Books Player, 4 times a year... poems, fiction, all kinds of articles from different publications - I never like everything, but I always really like/find interesting a lot... again, wonderful narrators!

5) I use Dragon NaturallySpeaking - a voice recognition computer software program which I had to purchase, but well worth it... I use a combo of keyboard and the software program to write... I wear a headset with mic and earphones, and it's learned my voice... takes some practice to get used to it, but worth it!

6) sometimes Ron reads to me :-)

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