September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

November 24th 2014 Noticing what's positive

By | Published Monday, November 24, 2014

Living with my invisible disorders is difficult.  My psychologist, Dr. Glad, tells me that effort counts, and I often think about that.  My daughter Cara remarked recently, watching me get set up for something, that "it must be so much work for you (me)" (not an exact quote).  There's definitely an element of work, of effort, that I deal with.   I use hi tech software and hardware, to help me use my computer, and to listen to audio books.  I've talked about my therapies, how I'm always working to make progress.   But in the meantime, I'm living my life right now, which means coping with my challenges.  All of which is why noticing, and finding, the good in my life is so important. To me noticing good things doesn't mean only special things.  Life is full of ordinary regular stuff, and I don't think that's bad.  I remember when unloading the dishwasher, or hanging up clothing from the dryer was a challenge.   Actually doing regular chores, projects, or whatever, can be a reminder that you can DO regular activities. 

I wish I didn't have to think as much as I do about the structure of my days, and weeks, and sometimes I get very frustrated that I need to.  But when I think about how I spend my time, I also try to remember to ask myself "is there enough good stuff?".  Of course, good things can vary quite a bit from person to person.  I don't just mean positive things that are big, obvious, and easy to notice.   I also mean the little day-to-day small pieces that add up.  I have a progress log that I started a little over two years ago.  I put down the big successes, like that I was able to attend the high school performance of The Importance of Being Earnest, or visit a college with my daughter.  But I also try to put down small things, like not needing as much of a break after dinner, or that looking from my personal calendar to the one on the kitchen wall is easier.  Does that mean that I can do these things symptom free?  No, it doesn't.  But that's OK.  If there is ANY improvement, it's still positive, and I get to put it on my progress log.

A Facebook friend asked me not long ago what I used for an anti-depressant, and I said "music!".  Music is huge for me, a major positive in my life.  My favorite quote about music is "music is the sound that feelings make."  Playing my flute allows me to express myself, and I make sure to play every day.   It's always been meaningful, but is especially so now because I remember when I couldn't play.  Sometimes I play a little bit a second or third time, and just listen to the notes that float out of my flute.  Ann asked me if I need a lot of breath to play.  I do, but it's different than when I do mindful breathing to relax.  When I play, I think about how to breathe so that I support the tone so that the note speaks the way I want.  I want to be aware of my breathing, but I'm focusing on making music, whether it's something from memory, or just playing whatever notes or rhythm patterns fit my mood.  

I also listen to music.  I listen during the day, but I make a particular point of listening at night.  If I forget, and am too tired to listen when I remember, I feel like something is missing.  Music really is food for the soul.  I created a YouTube channel when I was giving private flute lessons, which was fun - making the videos as well as teaching.  I don't know if I'll ever go back to teaching, but I'm pretty sure I'll record myself again and put it out there for whomever to hear, just for fun.  Music is wonderful for private times, but also wonderful to share.  So, although I'm not gearing up for something big like a performance or to attend a concert, clearly music counts in the positive vibes column.

Writing is definitely another positive element in my life.  I first put bits of my writing online a few years ago when I wrote about beginning to play my flute again.  I love the nuances of language, how words can have slightly different meanings, add texture and depth, carry weight, and power.  When my writing stirs up difficult emotions, it's still ultimately a good thing for me, sometimes even cathartic.  Writing is an amazing process that helps me put the puzzle together, think things through, figure things out.  I really need to write, to let the words tumble out.  As I said in a previous blog, I can't write a huge amount at a time, but I piece it all together, bit by bit, layer by layer.

People and relationships have always been important to me, so anything - in person or on the computer - that connects me to people I care about is good.  Of course spending time with my family is a positive.  Ron is generally quieter than me, so I especially enjoy having conversations with him and seeing him laugh.  I'm grateful that I truly enjoy being with my daughters.  They've both got a great sense of humor and make me laugh.  Due to visual problems, there was a time when I couldn't use Facebook at all.  I still have limitations, but being able to connect with friends on Facebook, both to communicate, and to share news and other info is definitely a positive.  I have days when Facebook is my only social life beyond my family.  Many of the people I'm connected to are people who I met at some point in my life, and I really am grateful for them.  It's also wonderful to be connected to people I never would have come across without Facebook.    

Dr. Glad always says, and it's so true, that we all have limitations and challenges.  And I need to remind myself of, and focus on what I CAN do, and when I succeed.  It's impossible to feel good about myself if I focus on my limitations, what I can't currently do.  I'll admit that I felt blindsided at first by my invisible disorders, and felt like "aren't I too young for something like this?".  Fifty - how old I was when I got sick - seemed too young.  But I got what I got, it happened when it happened and I try very hard not to compare myself to others.  I try instead, to pay attention, to really notice anything I can count as positive.


NOTE:  For anyone who wants to take a look/listen, here's a link to my YouTube Channel - all recordings done three - four years ago.

https://www.youtube.com/user/cool09VIDeos1

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November 17th 2014 Persistence, finding what works

By | Published Monday, November 17, 2014

"I want to know what's wrong with me."
"I want to feel better."
"I want to have a life again." 
Many people can relate to all three of these statements.  I see these, or variations of them, posted a lot on online vestibular support groups.  There are serious medical problems for which people end up fighting for their lives. Clearly, that's a big deal.  There are also lots of things that can be wrong with you but are manageable and don't really interfere with daily life.  I've had reactive hypoglycemia for over 30 years.  But properly managed, my RH doesn't make me feel bad most of the time.  Being dizzy, a symptom that most vestibular disorders cause, is different.  When I first got sick, it wasn't  just unpleasant, it was really scary.  I also felt really physically  sick.  Thankfully the scary times, the times when I'm dizzy, (which is worse I think than disequilibrium; feeling off balance), are brief and far less frequent now.  Feeling better to me means improving, which I am now doing.  But I know that dizziness keeps people from doing stuff, even very basic stuff.  It can seriously mess up your life. 

When I first got sick, I sometimes heard friends say "don't give up!"  I would now also say "don't give up on yourself."  When you are miserable and scared, it's very hard to keep going, keep trying to get answers.  It can get horribly frustrating, depressing, and just plain exhausting.  I now truly understand the meaning of the word persistence.  Until I got sick three years ago, never in my life had I gone to so many doctors!  And yet I wasn't getting answers.  I had to tell myself "OK, I'll go to this doctor," "I'll do this test," "I'll have this exam," "I'll go through this if it means I'll get some answers." To say that going through all this was difficult is an understatement, but I did it.  Finding the right doctor, to get an accurate diagnosis is so incredibly important. And I think it's what you have to do until you get answers. Sometimes you have to figure out what ISN'T the answer, in order to find out what IS the answer.  Finding out what's wrong doesn't instantly solve problems, but it's SO much better than asking over and over and over again "what's WRONG with me?".  I talk at more length about my journey to my diagnoses in other posts (see for example "Medically Significant"). 

Finding the right treatment, what works for you, is also really important.  In the early months of my illness, I was doing Vestibular Rehab Therapy - VRT - with a Physical Therapist (PT).  I presume that some people improve doing VRT with PTs, but I did not.  I went to my PT regularly.  I wanted the VRT to work.  PTs can do some basic testing, for example for BPPV, but are not, in my opinion, qualified to make more complicated diagnoses.   I did not have all my diagnoses yet, and I think a lot of PTs are very used to doing VRT as a standard therapy for vertigo.  She also kept telling me my BPPV was gone, even though I had a hunch later confirmed by a neurologist, that it wasn't.  Most importantly, I was not seeing any improvement in my life from doing the VRT.  VRT is not the only option available.  I stopped working with the PT when I got connected up with Joyce, an Occupational Therapist whose specialty is Feldenkrais therapy, which is brain re-training.   

My vision therapy is supervised by a developmental optometrist.  A developmental optometrist does eye exams to check for physical eye health, which means they do standard eye exams like dilation, and checking your eye pressure.  They also check that your eyes are functioning properly in a variety of ways.   Both of my daughters have been checked by our developmental optometrist, Dr. Margolis.  If there is a problem, some form of vision therapy is often recommended.  For grownups, like Feldenkrais, this is also a brain re-training issue.  I don't completely understand the complex system of vision, or how the therapy works, and I don't try.  I leave that job to my doctor and therapist.  I do try to answer my daughters' questions when they arise, and sometimes I tell them "I don't know."

Finding the right people to work with is important, but then the work to improve begins.  I wrote about being understood, and this is important not just for family members who live with me, but also those who work with me.  Improving, for me at least, is a work in progress.  I speak regularly with my psychologist, which is very helpful.  I'm always communicating with my therapists, Ann and Joyce.  I need to communicate well, describe things  to each of them.  I think having invisible disorders that affect my life means that people I work with need to have some info about my daily existence, because they are working with me as a whole person, not just my disorders.

Looking back, given how sick I was, I know I did the best I could to get what I needed.  I didn't give up on my search for answers, both for my diagnoses and for treatment with the right skilled, caring professionals.  I hope that no one gives up on their journey to find answers, to get what they need because it's so important.  I remember during a visit with my ENT, Dr. Ziffra, he told me in answer to one of my many questions (note: not verbatim): 

"That's beyond my area of expertise.  The whole balance system is very complicated.  It involves the ears, eyes and a part of the brain.  It's not uncommon for an elderly person to have a problem with balance, so I strongly recommend that you get to the bottom of this now." 

I think it's wonderful when a doctor says "that's beyond my area of expertise," because they are admitting they don't know.  When a doctor says this, I think you can trust them when they tell you what they DO know.  As frustrated as I was, I took his words to heart, and his words were one more little piece that helped me keep going until I got answers.  So now I'm passing these words on... keep searching until you really have the answers you need, and feel like you will be able, little bit by little bit, to improve.


NOTE - It would be great if other people who have had success with treatments other than VRT could share - Thanks....

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November 13th 2014 - Writing, and Understanding

By | Published Thursday, November 13, 2014

Cara asked me recently why I was writing a blog.  I told her about a conversation I'd had with Leena when we came up with the name.  I told her how Leena wrote key words as we talked, and that I plan to keep the note because it's a reminder to me of that brainstorming conversation.  In the end, there are really two main reasons.  I love to write despite the challenges it now presents.  Actually, I need to write, just like I need to have music in my life.  Whether I'm writing about social issues I care about, or music, or an audio book that moves me.   The other reason is that I want to add my voice to those already working to raise awareness and understanding about invisible disorders.  I believe very strongly that each person can make a difference.  I don't ever want to see myself become silent, thinking "why bother, it doesn't matter.  I'm only one person, who's going to listen?"  There's always at least one person who will listen.

Writing is really something that has always been a part of my life, although not in a public way.   I've been writing ever since I was a teenager.  A lot of it was private journaling, which I still do, and I also wrote the occasional short story or poem.  Some students hate writing papers, but that was never me.   I did loads of writing when I was a student, and back then it was, of course, actual writing or typing on paper.  I still remember typing my Masters Degree thesis.  Writing, or rather keyboarding is challenging for me now, though not because I need ideas or inspiration. It takes time for me to write a blog because of how I need to pace myself.  But for the very reasons that writing is challenging for me, it's also good for me.  And I'm fascinated with the power of writing, both for what it does for me to put thoughts, ideas and emotions into words on paper (or computer), and with the ability to reach people. 

Vision problems are fairly common for people with vestibular disorders, since vision is a key element in the whole system of balance.  My vision problems are not particularly common, based on information I've taken in about people with vestibular disorders.  Vision disorder is a very broad term.  Everyone knows what the word vision means, though many don't know how complex the whole visual system is.  My problems, as I've mentioned in other blogs, have nothing to do with eye health.  My eyes are quite healthy.  I don't wear glasses, or walk with a cane, or in any way LOOK as if I have any vision problems.  If you heard me ask Ron to read something to me, or saw me listening to text on the computer through my headphones, you might wonder what was going on.  There are many ways I am challenged throughout the day, despite the fact that I can literally see quite clearly.

My vestibular disorder, Migraine Associated Vertigo, is also sometimes called Vertiginous Migraines.  When people think of migraines, they think of someone in pain, and that part is true.  But migraines, which vary in severity, can also cause vertigo or disequilibrium, which is why I don't like to just say I have a migraine condition.  The term vestibular disorder is broad, because MAV is only one of many vestibular disorders, but more accurate since vestibular (which refers to the inner ear) means my equilibrium is affected.  It's still not a perfect term, since balance is really a whole system, not solely dependent on the inner ear.  But the words vestibular disorder are definitely an improvement.  There are many names of disorders and conditions that are now commonly used and familiar, and I want vestibular disorder to be like that.  There are situations when it's appropriate and necessary to tell someone I have a vestibular disorder, and I don't want it to seem like I'm speaking in a foreign language. 

I believe people are often afraid of being judged or stigmatized if they tell someone their medical problem.  That those with disorders will be treated differently, as if they've somehow BECOME their disorder.  No one IS their disorder, regardless of the problem.   You are still a person with a personality.  Using the phrase "I have health issues" is not, in my opinion, an improvement.  To me, this is a polite phrase that people use, often when they are worried about saying what is really going on, or because they don't think they will be understood. There are so many people living with problems no one can see, and people don't think about that often enough, instead judging others, presuming they know everything they need to know about a situation or person. I feel very strongly that people need to stop and think, realize there often is more to the story than meets the eye, and treat each other with compassion and understanding.   Someone might see me at an event, and not have the slightest idea that anything is wrong.  In fact, I need to get my bearings regarding the size of the room, the number of people, the noise level, the lighting, etc.  I'm fortunate that the congregation I belong to is a wonderful, supportive community.  Even so, no one really understands what it's like for me on a day to day basis living with vestibular and vision disorders.  So my writing gives glimpses or snapshots of my experiences. Those snapshots are important windows into my life, as I live with invisible disorders. 

Sharing my experiences can be difficult, or make me uncomfortable, but that's not a bad thing.  Sharing my writing makes my medical challenges more real to me because I look at and think about my situation in a different way. This process, and helping others with invisible disorders, is all good.  I don't personally believe that my vision or vestibular disorders happened for a reason, or were meant to be.  I DO believe that learning and growing from whatever I have to deal with is really important, and a much better expenditure of my energy than anger or self-pity. To say that what I've been going through, and working with hasn't changed me, had an impact on me and my life would be ridiculous.  Of course it has, some good and some bad.  But it's still NOT who I am, not my identity. 














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