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 June 2016

June 28th 2016 Short update on home project challenges...

A new blog post will be coming when major house projects are further along, and challenging computer set-up is no longer an issue... check my VPIP FB page for mini updates and some music ... Thanks for understanding :-)

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June 19th 2016 More about how our project is challenging me...

To listen: copy and paste into Google Translate, click on "speaker" icon.

What an outpouring of response there was from VEDA (www.vestibular.org) readers when my cognitive processing, mental energy piece was posted!  I try to respond to comments, both on my blog site and VEDA.  However, with everything going on in my life, and the number of responses, I thought I'd say "thank you" here, and follow up with this.

So yes, thank you! To everyone who read and commented, thank you.  Also a big thank you to everyone who shared my piece - sharing helps to raise awareness, so that's really important.  At first I was astounded at the numbers - not thinking "wow, my writing's amazing!" - but rather that this issue is SUCH a big deal for people with these kinds of invisible disorders.  It was also very validating; clearly this is a HUGE issue for everyone - I am definitely NOT alone.   Then I realized it makes sense.  I think the whole cognitive/mental energy thing is one of the hardest, if not the hardest part for me to explain. 

I'm aware of this right now, trying to explain to my daughters why dealing with this basement project takes a lot of my energy.  Going anywhere new is challenging, and being in my own home is like being someplace new right now!  Let me give some examples of this.  I had to take a phone call from the Village of Deerfield about the permit we need.  I don't talk on the phone a great deal, for a variety of reasons, and this was after Ron and I had made a trip to the Village.  But my first thought when the phone rang was  "where's the phone?".  My computer station is still set up, but the rest of the basement is strange - there's a huge mound covered in white plastic just a few feet away.  I found the phone, but it literally made me feel off balance.

I also stood in the space behind our basement stairs.  It's been years since I did that, and intellectually it made sense that I could walk back there, but it threw me.  Our basement stairs are covered in clear plastic now, and it's very shiny.  It also sounds different walking on them.  I know no one likes disruption, and it can be stressful, etc., but this is different.  I feel less grounded, and it's tiring.  There's so much problem solving, figuring out, and spatial stuff - it's a huge challenge.

I had a chance to go to the hotel with my daughters.  Very helpful to see the space, look in the kitchen, etc. - think about what I'll need to bring from home, what will be different.  Cooking with electric rather than gas, computer set up on a kitchen table, the girls looking around figuring out where our pets' stuff will go, and I mentioned where we'd walk Cosmo while we're at the hotel.  We also saw where the laundry room is located.  All of this may sound inconsequential, but all the planning, and wondering what routines we'll be able to figure out takes a great deal of mental energy.  I was TIRED when I got home - so much new info!

So yes, it's really hard, and yes, we have to support each other because no matter how much friends and family care and want to help, this is a unique problem.  Not one ANY of us asked for.  It's not our fault - I remind myself of that when I make a demand on a family member that I don't want to have to make.  We can get through it.  As lousy as it can be, we can still live.  I'm being put way out of my comfort zone with everything that's going on - even down to the fact that I'll need to practice using my ipad - VERY visually challenging - (with help from one of my daughters) to be online because my computer will be packed, then set up, then packed, and set up again! 

So how am I talking myself through all of this?  Reminding myself that though my first reaction often is to feel off balance and/or anxious, my brain/vestibular system can adjust.  It takes effort, but I can do it.  Step back, breathe and figure it out.  Talk to people who understand.  Listen to music - this is really important for my sanity.  Do some normal things while at the hotel - like cooking.  Mix in some normal things even before I'm at the hotel.  And when it's all done, I'll say, wow, I actually made it through!

For anyone who doesn't know, and wants to know more about my story (and my rehab), please take a look at my About Me on my site - http://visiblepersoninvisibleproblem.blogspot.com/p/about.html - there are also specific links to articles re vision, my Feldenkrais Therapy, and if anyone wants to check out my YT channel (all recordings done prior to my illness - haven't done any new ones yet :-) ).

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June 12th 2016 Reminders of what was "supposed to" be....

To listen: copy and paste into Google Translate, click on "speaker" icon.

I've started a list of what I'll need to bring to the hotel.  Of course I'll figure it out, because I simply have no choice, but I'm struck by the fact that I'm really not very mobile these days.  I'm going to go to the hotel with Cara so I'll have been in the space once before going there to stay.  It won't be the same as staying there, but at least will give me a taste.

I began sorting through some things that have piled up over the last few years.  Due to my disorders, I'm not nearly as organized as I used to be.  I came across a binder which goes back to when I sang occasionally with a group of friends.  Another one from when I sang with our congregational choir.  I also came across various stuff from when I taught flute.  Finally, I saw a folder that goes back to a band I used to play in.  When I first developed hand troubles, I asked the band director if he wanted me to return it.  He emphatically said "no" (thinking I'd be back soon), and then he left and a new director came along.  I never spoke to the new one, and so there's the folder.  Somehow, I just can't bear to ask if they want it back.

After this sorting, which was difficult not just emotionally, but visually and balance-wise, I went up stairs and responded to my daughters' query about an outing of hers the next day.  I said the TV was distracting me from being able to think, and left the room to attend to my dinner, and then when I returned I told her how I felt.  While in the kitchen, I had decided that sometimes it's OK to respond not just as a mom, but as a person who has health problems that impact my life.  So I was honest with her.  I told her about my sorting, and how hard having a social life is because of my disorders.  It also happened to be when Ron was out for the evening, and I was missing a congregation event because I'd been out in the morning.  I can't do two outings in one day!

I managed to talk to my daughters without tears - despite the honesty of my words, I didn't want to burden them with my emotions.  So, I went into the bathroom - I'm often struck by the times I end up there - and my emotions came over me in waves.  I asked myself how to turn this into something positive, and then I thought "I can't, sometimes I just can't."  People wonder about my positive attitude, and mostly it comes from music, and connections with others.  But sometimes, sometimes I just can't see the positive.  All I can see, all I can feel is the pain.  The pain of what was supposed to be happening in my life.  "Supposed to" can be a dangerous phrase - along with the word "should."  But the glaring reality is that it hurts like hell sometimes to get reminders of what I thought I'd be doing.  No, I haven't given up the ghost on teaching flute.  But it's a long journey with a lot of unknowns. 

I decided the other day that I'd set up our electronic piano/keyboard and "doodle" on it just as I do on my flute.  I don't know how to read piano music, but that really doesn't matter.  But that doesn't take away the pain.  It doesn't take away the loneliness of how difficult a social life is with my disorders.  So I let the sadness soak through me.  Sometimes that's really all I can do.  It's the only way to be able to get up and take another step.  To let myself feel those moments when taking another step feels really, really hard.  I tell myself I'll get through this.  I also know two basic truths:

1) The reality is that I have invisible disorders that have changed my life, and I have to live with that reality.

2) If I want to see more than subtle change, I have to take a pretty long view. 

I have to recognize that as hard as this is, maybe I couldn't have done it a year ago.  Give myself credit for pushing through this.  I had to box up my sewing machine, and sewing supplies.  Sewing is way too difficult for me visually.  I don't know what I'm gonna unpack once the basement is done, and I'm not going to think about that right now.  I'll allow the pain when it's there, and get through this one piece at a time.


February 4th 2015 What it all feels like to me

I've written about wanting people to be familiar with the term "vestibular", but prior to getting sick, I don't remember if *I* was familiar with the word, and I don't think I knew anything about the vestibular system.  I had experienced temporary dizziness in various situations, as well as headaches, and definitely had heard of migraines, but I didn't know about MAV.  As far as my eyes were concerned, I knew about vision diseases, but other than people needing glasses for near or far, I knew nothing about vision disorders.  I think a lot of people who know me still get pretty confused about what I'm dealing with.

There are an incredible number of different disorders, and symptoms that go under the umbrella term "vestibular."  This is one reason, I think, why people so often post on FB "do you experience (fill in the blank)?", "has anyone else had (fill in the blank) happen to them?".  I've also had questions from people asking me if I've heard of (fill in the blank) because I have a vision disorder.  I don't object to the question, but it shows how many different problems there can be, and the complexity of these systems in our bodies. 

I've used the term invisible disorders a lot, because all of these terms/disorders are invisible.  Many people with vestibular disorders have combo diagnoses, possibly one thing resulting from the other.  Many people have heard of Meniere's Disease, migraines, and Benign Paroxysmal Positional Vertigo (BPPV), but there's a lot of other diagnoses that fall under the term "vestibular."  A vestibular disorder technically means you have a problem with the system in your inner ear, even if you don't actually FEEL it in your ear. The word vestibular, if you Google it, which I did, originally came from the word "vestibule,"  which is a sort of inner room.  Once upon a time, the inner ear was described this way, and the word vestibular, which refers to this "inner room" came about.  If you look up the word "vertigo"  the meaning refers to dizziness, but in the medical community vertigo refers to disequilibrium, being off balance.

In addition, if you do an online search, vestibular and balance disorders have separate definitions, and so does vertigo.  By definition, a balance disorder means you have some trouble with balance.  There are lots of reasons for balance problems; balance disorder to me is another huge umbrella term.  There are lots of different vision disorders, many of which can affect balance. It's very difficult to find info online about my vision disorders in adults; I haven't found anything useful to date.  This surprises and frustrates me, because although I know my vision disorder is much less common than MAV, I know there are other people  out there (I'm not my doctors' only patient!), and vision plays a huge part in balance. 

A little background now about what I know about what happened to me that resulted in my vestibular (MAV) and vision disorders.  I didn't suffer any injuries, don't have any nerve damage, nor did I have a virus that caused my invisible disorders.  My migraine condition is due to a combination of hereditary factors, and hormone changes due to menopause.  Regarding vision, I'm pretty sure I had undiagnosed Convergence Insufficiency (CI) as a kid.  This has nothing to do with focusing; basically it means that my eyes don't coordinate properly in sending messages to my brain.  My CI got greatly aggravated and complicated, which is why it's really more involved than CI, by prolonged undiagnosed balance/dizziness troubles in 2011. 

I don't know if there is a "typical" MAV experience; sensory overload (i.e. lights, noise) is the main reason I might have balance troubles at this point.  In terms of actual migraines my condition, though not gone is vastly better than it used to be, thanks in large part to my diet and proper rest.   I think my Feldenkrais therapy also helps.  MAV is a fairly common Dx;  there are classic symptoms, that you can find on the MAV info page on the VEDA site but everyone is also individual, and has their own unique symptoms, experience.  To me, this means you have to get to know yourself, and how your condition affects you. 

I haven't talked much here about the specifics of how my vision disorder is affected, what gives me trouble.  It's harder to explain than MAV, besides some fairly obvious stuff like movement and driving.  When someone is with me, they can ask me a question, and people can ask me online for that matter.  I'm learning that I need to give basic explanations, rather than presuming that people get what I experience.  Especially since I don't LOOK like there's anything wrong.  Of course, that's the idea behind calling my vision disorder an invisible disorder, isn't it? 

For me, feeling off balance/disequilibrium and being dizzy (technically vertigo) are not, in my experience, the exact same thing.  They don't FEEL the same to me; I can feel off balance without feeling full blown dizzy.  It's hard to pick it apart, but I FEEL like my vision disorder impacts my equilibrium more at this point than my MAV does.  Of course, that's also because of choices or decisions I make in the management department.  That said, although the diagnoses for my disorders are very distinct, how I (or anyone) experience them really isn't nearly as distinct as the labels make them sound.  I think most vestibular/invisible disorders, in my case vision and MAV, cause overlapping symptoms; one problem affects another because the systems are all connected, related.   Messages are traveling through nerves to brain to other parts and back again.

I remember early in my quest for a diagnosis, during a conversation with an uncle of mine, he commented that vertigo is hard to diagnose because it can be caused by so many things.   What we didn't talk about is how frequently more than one thing is causing the vertigo and/or balance problems, and based on what I've seen online, this happens to a lot of people.  There is research being done, and there are tests being developed, which is good because it all points towards getting quicker, more accurate diagnoses.  But we have to remember that labels can be very broad, and don't always accurately reflect individual symptoms, how we the patients feel.  If I hadn't paid attention to what I was experiencing, how I was feeling, talked to my Feldenkrais therapist, and realized SOMETHING else was going on besides MAV, I wouldn't be doing vision therapy now.  It's so important, I think, to be aware of everything, really listen to your body.  My inner ear may technically be my vestibular system, but it's not even close to the whole story for how my body achieves, or doesn't achieve balance. 

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