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 2018

December 30th, 2018 Slowly but surely, adding to my pebbles

one pebble & grain of sand at a time, creates a beach, or even a hill... imagine what multiple stacks of stones grouped together can create... so a full life for me right now is -

1) home functioning - continue improving
2) some outings, a few special
3) all my therapies - Feldenkrais, cognitive behavioral therapy, & vision
4) all my creative outlets
5) people, pets... yes, the list is slowly growing, just like the pebbles, & grains of sand...

Wishing my readers continued hope & healing!

every little bit counts... onward to 2019 :-)

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December 29th, 2018 Anxiety - it comes down to exposure

Speaking broadly, there are 2 kinds of worry - 1 & 2... Worry 1 is an actual problem - there are loads of real problems - and problem-solving is important, though not all problems can be fixed, or maybe there's a piece that's not easily fixed.

Worry 2 is the ??? - there's plenty that goes in this category, & we try to predict, & forecast, & prevent... sometimes it works, sometimes not. There's often LOTS of stuff beyond our control.

Worry Exposure... Christina has often told me that learning to tolerate uncertainty is key in treating Anxiety.  Learning to tolerate uncertainty means exposure. I did NOT want to do exposure, but I now get that it's necessary - anxiety treatment can't be done just by thinking about anxiety, or talking about anxiety - you have to expose yourself to what makes you anxious (with meds supervised by a doctor, in my opinion)... Fun, right?

Exposure is different for everyone, because what actually makes people anxious differs, & you DON'T start with whatever rates a 10/panic attack!  To be successful, you start exposing to what is, for example, a 2,3, or 4. Hopefully over time, anxiety decreases. Working with a professional is also, in my opinion, recommended.

I'm don't know how often anxiety that rates a 10/panic attack successfully diminishes, but I DO believe that anxiety that's between 5 & 10 diminishes... I ALSO believe it takes time, & doesn't go in a straight line... Dealing with problems - particularly difficult ones - rarely does. So as I head into 2019, I want to keep trying, do the best I can.

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December 27th, 2018 home functioning + some special outings = "amazing!"

I've been feeling kind of down, & then I thought "you know what, being able to do SOME outings - a few of which are special/particularly challenging - over the course of a year is a BIG deal for you!"

I also remembered Christina saying that I sort of "skated" over saying that I'm more functional at home, & "that that's actually amazing"... & I thought "she's right, being functional at home matters a LOT!"

so I did this drawing, & I'm sharing it... because with my invisible disorders - visual and vestibular - doing stuff at home matters... & I'm trying to think of things I can do with my daughters at home, while they're home on break from college.

I have no idea what my future holds - none of us does... I'll do the best I can now... I didn't ask for either of my disorders - who would?! - but I've got to do the best I can with abilities/functioning I DO have.

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December 24th, 2018 Volunteering

The holidays aren't, in my opinion, just about receiving - also about giving... so I thought I'd share my take on -

1) you make an account - fairly easy

2) you choose causes, areas of interest, & what skills you have to offer - I needed help due to my computer limitations, but you could do this on your own - depends on your disability

3) you click on "save" for each section

4) click on "recommendations" - you get a screen with all what the site came up with depending on what info you put in, & then you can click on "learn more" to get more info. There's also a "contact" to click on.

This site seems to be for commitment - people who are serious about volunteering (no idea how organizations get listed).  Christina said that it looked different from when she'd last looked at it - it's a sophisticated site.

One major drawback was we couldn't see a way to indicate preferred distance to travel.

For someone who wants to "dip a toe in," like me, it's not really helpful. I'll have to think about who/where to contact locally.  

In the meantime, I'll try some new member calls for VeDA (the vestibular disorders Association -

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December 21st, 2018 balance is complicated...

I chose this picture because even the slightest touch would change it, which is exactly how I feel about balance...

I'm very grateful to be in better shape than I was a year ago, when we hosted our annual family Hanukkah party... To be honest, I'm also a bit surprised... getting sick changed me neurologically, & I'm trying to regain what I can... 

One truly good thing is that I've discovered I like being able to speak out on behalf of those who are unable to... please visit the vestibular disorders Association - VeDA - a small, dedicated staff works hard to spread awareness & info... I'm grateful for the people I've become friends with

here's a link to migraine associated vertigo - my chronic illness - there's LOTS of other info - take a look, share... having a diagnosis is crucial... if you DON'T have answers yet, KEEP LOOKING, asking questions!

a link to the college of vision development - vision is part of your system of balance

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December 20th, 2018 Reach out!

Holiday season can be wonderful, but for some, can be really, really hard... if you're struggling - reach out! 
If you know someone whom you think is struggling - reach out! 
Don't be bashful - you could make a difference... below are links for -
1) & 2) suicide prevention, 
3) depression and bipolar support, 
4) & 5) anxiety & depression, 
6) vestibular disorders Association - you are not alone

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December 19th, 2018 OWNING the positive, or climbing out of "the rabbit hole"

Thinking about pulling myself "out of the rabbit hole," I drew this last night -

I commented on FB in a vestibular group that it's WAY too easy to "fall down the rabbit hole"... I love when my daughters come home on break, but I start thinking about what I can't do with them, and yup, down the rabbit hole I go...
SO, I thought, "OK, how can I make the positive stuff more "sticky"? "

I thought about how I used to listen to Jason Mraz's music, & then I stopped... last night, I pulled up his newest album - I give myself credit that I'd bought it, even though I didn't listen to it - & actually listened to 2 songs.

As I listened, I thought "he's not ignoring all the bumps and bruises that people can get on their journeys, how hard life can be... he's choosing to focus on the positive, to remind people about the joy of living...". 

Focusing on the positive means I have to SAY it, make a conscious choice to pay attention, & OWN every single thing - not negate the little stuff.. write it down, draw it, SAY it out loud... Every. Single. Day.

I'm GOING to reclaim feeling good about what I can do - believe goodness can co-exist with the sadness of loss, own the reframing I can do of my negative thoughts... I'm not going to let Anxiety, & its' buddy Depression, win!

I have the right - everyone with vestibular & vision disorders does - to a worthwhile life!

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December 17th, 2018 Ready to try to live the best life I can

My goal with this blog is pretty simple - I want to show - myself & others - that life with invisible disorders/disabilities is not only possible, but worthwhile... I'm in good company - there's loads of people with disabilities of one kind or another... & loads of people with chronic illnesses.

The more people - in my case, with vision & vestibular disorders - with invisible disabilities/disorders
speak out, the less stigma, and the more encouragement there is - I know *I* love seeing others' stories - it helps ME!

Christina said to me months ago that she wanted me to live the best life I could... I feel like I'm finally ready to try to do that... so I decided to think about what (most of the time) makes me happy - I mean, really, how many of us stop to think about that?

my pets - our 2 social ones pictured with this post - Molly & Cosmo

my husband Ron
my daughter is Leena and Cara
other family
friends - this definitely includes those I'm connected to only by phone or online

making music
listening to music
listening to a good audiobook
watching a good movie
taking walks outside
my houseplants
pretty flowers

being able to do some things without help
trying something new, and having it work

I'd say this list is a pretty good start :-)

photo credit Ron

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December 15th, 2018 I've come a long way

Instead of comparing myself to how things were before I got sick in September 2011, I decided to compare myself to how I'm doing now, compared to the first year of my illness -

I can take walks outside - in fact, I can walk Cosmo by myself

I can cook at the stove - & not be wiped out

I can do a load of laundry without Ron's help - I use a bag to take everything down, I can get stuff from the washing machine to the dryer, & then back upstairs in multiple trips

I can put things in my oven, which includes lifting things in and out of it

I can prepare 2 separate grocery lists - 1 short one for smaller errands, & 1 long

I can put groceries away - including some downstairs in basement storage if Ron is not available

I can play my flute for a few minutes a day

I can listen to audiobooks, both on my iPad and my talking books player

I can listen to music on my iPhone

I can use my computer, with help from Dragon NaturallySpeaking

I can draw, & use our piano keyboard

I can think, problem solve!

I spend more time OUT of bed, than IN bed!

I can handle some phone calls

I can water the houseplants

I can load and unload the dishwasher

I can wash pots

I can write reminder notes to myself

I can write this blog, including sometimes posting pics now! The pic for this piece is part of my little corner of the basement - including my started List #3

I'm using an iPhone!

I sometimes do outings - I'm trying!

I have diagnoses, and I'm showing up for my therapies!

I take care of our pets

I can take taxis

I'm watching movies again

I'm using special glasses, & I'm back to using reading glasses (now tinted), & sunglasses 

Some of this list is a repeat, but that's on purpose - I want to keep reminding myself of what I've accomplished ... Clearly, even though I still have symptoms, I've come a long way - I need to focus - REALLY focus - on what I CAN do.

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December 14th, 2018 iPhone 6s review from a disabilities perspective

I've been using my iPhone 6s for about 2 weeks, & thought I'd give a review, as a user with vestibular and vision disorders. I'll get the not-so-good out of the way first -

1) it's still a screen - & a very small one - so I definitely have to limit my time.  This isn't surprising, but still frustrating. Due to screen size & animation/touch screen features, I'm not using my iPhone for e-mail or FB  - that's still my desktop.

2) voice over feature - found by, & demonstrated to me by Ron - good idea (intended to read what's on the screen), but needs work - annoying, unhelpful - not using it.

3) Siri - apparently a lot of people have some complaints about this feature, so I'm not alone.  when Siri works, it's wonderful, but very annoying and frustrating when she doesn't - sometimes she's pretty dumb (I know, I know - it's software, not a person LOL).
So, definitely using Siri, but I feel mixed about her. Ron just told me about the command "Hey Siri, speak screen" - which seems to work better for reading texts to me - here's hoping.

4) voice recognition - I'm using this to compose texts, just as I use Dragon NaturallySpeaking on my desktop.  Using Dragon meant I've already done the learning curve for this type of tool.  Much better than using the touch screen/animated keyboard, tho I'll use that for really short responses.  Definite plus.

Reasons I got an iPhone -
5) music! I can finally listen to what was on my 12 yo iPod -  learning this feature was fairly easy, sound is decent. Definite plus.

7) taking pics - yes, this is fun.  Challenging for me, due to my visual and vestibular disorders, but a definite plus. 
Pic for this post is an artistic rendering with colored pencils, of all the creative stuff I do - writing, playing music on my flute & piano keyboard, listening to music, & drawing. Doing this complex drawing was major for me!

8) I was running out of storage on my basic phone, & had serious software incompatibility problems. 

9) it's a phone! the sound is better than my old basic phone, & I use my directory feature.  Voicemail, etc. pretty easy to learn, and Ron helped a lot.

Overall, I'm glad I'm now in the smart phone world.

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December 11th, 2018 Positives lists... keeping track - proof of progress

List #1 was done back in October - I need to be claiming my credit, so I'm sharing it -

List #2 was created today - 

& there's 2 more to add to the list #2 -

15) rough sorting of mail that collected

16) going thru a bunch of old coupons - some recycled, some kept - this meant looking at expiration dates

17) lighting Chanukah candles

My pattern is to note positives for a few days, & then stop - I'm going to try again - I was very, very sick 7+ yrs ago, & I need to give myself credit for EVERYTHING I'm doing!

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December 10th, 2018 Expand my world

I started this blog back in 2014... prior to that, I posted on my personal FB page... I've written about my journey - specifically in my piece dated 10/24/18 (timeline of progress), & 11/16/18 (my journey with anxiety & depression mixed in).

Some things I've realized recently -
1) I like getting out of the house - & it's good for me

2) I don't love taking taxis, but I'm more comfortable now, & taxis give me some level of independence

3) I want to be with people

4) I want to do something that feels meaningful

5) My role as a mom is a forever role, but also always changing.

6) I'll always be a musician at heart, but I'm no longer connected to the world of music the way I once was.

7) I've become a really good listener, & am also very empathic and compassionate.

I'm thinking about some kind of volunteering - maybe at a local hospital, maybe a nursing home.  I thought about this a few years ago, looked at one application, & got overwhelmed. 

I want to revisit this idea, which means doing more than looking at an application.  It means gathering info, trying, seeing if something is workable.  I want to think about  - perhaps write about - other people (anonymously, of course, unless they chose otherwise). I know my journey's not over, but I also know I want to expand my world, to the extent I can.

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December 7th, 2018 Normal is a range... rediscovering hope

I'm having stretches of what I think is normal, healthy productivity at home - what Christina calls activities of daily living - ADL... not completely symptom-free, which is OK.

I'm telling myself not to compare to my pre-illness self... these stretches feel oddly strange, kind of surprise me, but I know it's good :-) I want as much normal as possible - normal isn't - I don't think - one spot, there's a range. 

In neurological rehab speak, I'm starting to have times when I can multi-task on a more complex level -

1) proud of myself - chatted with the exterminator tech today, instead of just what was absolutely necessary

2) getting my lunch started when the tech was here 

3) emptying the dishwasher while on hold with Walgreens - which meant noise in the background

4) washing a pot is no longer as challenging

5) doing a load of laundry is no longer a major day's activity

6) going with Ron to Cosmo's senior wellness check at the vet - she'll be surprised to see me - I've been by phone for several years!

7) I'm using a smart phone!

I still can get really tired, & need to remind myself of what I've done that day, & that it's OK to be tired - this is how I slowly get stronger.
If someone had told me a year ago how improved I'd be now, I wouldn't have been able to take it in, believe it.  A year ago, depression, & anxiety shrouded and obscured hope from view. It's coming into view again.

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December 4th, 2018 pulling myself back into the world

I was resting, & let myself remember the night I got sick... I felt the fear... I don't remember - that night in Sept. 2011 - thinking, only feeling - vertigo... I remember sitting up, trying to hold VERY still... not to move... very scared...

I vaguely remember trying to convince myself it was an inner ear infection, but I don't think I really believed that... when Ron called my doctor in the morning, & he was told to take me to a neurologist, my fear, anxiety grew.

That turned out to be the beginning of many moments, when I just held myself - wrapped my arms around myself, trying to hold myself together....

Today while resting, I said to myself "OK, you're here... breathe... feel your lungs expand and contract... feel the bed under're here... " this grounded me, I felt the anxiety - like messy, broken pieces inside me - slowly fade... "you're a whole, connected human being..."

I have diagnoses now, & I'm gaining more & more understanding...  it's hard... it takes time... I realized it needs to, so my brain, my neurological self can process,  integrate...

That's something I lost when I got sick - neurological integration  - & I still get scared, but I'm learning that the fear passes eventually...

I try things now, remember more often to name, label the anxiety, but still try... tell myself it's OK - good, actually - to do little bits, small steps...  Never perfect, no guarantees... but I'm trying... & bit by bit, I'm pulling myself back into the world - a world full of people, activity, I feel like I fell out of.

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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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