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...

Archive for February 2015

February 25th 2015 Life is challenging, so what to do?

By | Published Wednesday, February 25, 2015

Growing up, health challenges were not a personal, tangible part of my world.  Neither of my parents had any major health issues that impacted my life.  Challenges due to medical disorders are now obviously very real to me, both because of my own experiences, and those of members of my family.  I know there are many people in the world whose lives are difficult, and health is often part of the mix.  Many people deal with chronic health problems that affect their quality of life in some way.  I won't say that being healthy is everything, but if you're in good health, taking advantage of opportunities is easier, less complicated.   In my case, a paying job is not an option, and I need to think carefully about volunteering opportunities.  There are activities I can't participate in, but I can lend my voice and ideas.   I have to figure it out with people who are understanding.  

Given what I'm dealing with now, I found myself remembering a phrase from my college days:  "Life is hard."  That's the opening sentence of a book called "The Road Less Traveled: A New Psychology of Love, Traditional Values and Spiritual Growth," written by M. Scott Peck, M.D., first published in 1978. Thirty some odd years ago, I took a philosophy seminar class as a senior in college, and it was a favorite of mine.  I wasn't a philosophy major, but it was fascinating to be exposed to it.  We had a professor, but there was also a group of three students who helped lead discussions, and we all always had a lot to say.  "The Road Less Travelled" was one of the books I read for this class, and I've always remembered that first sentence; "Life is hard.".  We talked quite a bit about the fact that Peck put this idea out there, right in the beginning. 

I thought then, and still do, that the perspective or presumption, that life will be hard was compelling.  It's right up there with the idea of the pursuit of happiness, rather than the guarantee of happiness.  But if I were writing that sentence, I wouldn't say life is hard, but rather that life is challenging.  The word "hard" makes me imagine stop signs and brick walls.  I often think when people use the word "hard" what they really mean is that it's too hard, whatever the "it" is, and that kind of thinking can get you into trouble. I also wouldn't choose the word "hard" because the opposite of "hard" is "easy," and life isn't easy.  There are moments here and there that are easy, that just kind of flow, but I don't think in general that life is easy. 

"Challenging" to me has a very different feeling to it than the word "hard".  I like the very first definition I found:  "testing one's ability, endurance."  If you're testing your ability, that means you may have to dig deeper, but you can do it, you can endure.  That's an empowering message.  I think of another phrase I've heard quite a bit, that life's challenges make you stronger, and I agree but I'd add resilient. No one likes dealing with a major challenge; going through the experience may just feel draining, exhausting and difficult.  But I know that even now sometimes I say to myself, "OK, look how much you've been through, you can handle a lot."  It's valuable for me, even though I have very real challenges, to remind myself that I'm not fragile.

Another reason I like the word "challenging" is because something that's challenging is more like a really really difficult problem that needs to be dealt with, tackled.   Pain and dizziness definitely rank as major challenges in my book.  It's hard when you're in pain not to focus on the pain.  Dizziness to me is even worse.... dizziness makes me feel out of control, ungrounded.  Disconnected from the world around me.  Disequilibrium isn't quite as bad, but it definitely gets my attention.  So the idea of tackling feeling any of this, working through moments of any of this feels empowering.  Not tackling my disorders makes me feel stuck.  Stuck means there's nothing you can do, or at least you FEEL like there's nothing you can do.  I HATE feeling stuck.   I do feel sometimes like I'd like a break, like I really don't want to find out what I can handle, or have more situations that I can learn from.  I want a day that isn't filled with challenges.  But I'd still rather be tackling my challenges than doing nothing.  Doing nothing makes me feel helpless, and no one wants to feel helpless.

All of this gets me thinking about quality of life, and how health impacts quality of life, and what to DO about that.  In the end, what's in the mix with all the hard, or challenging stuff so I/we keep going?  I don't remember if Peck answers this in his book.   Figuring this out when you live with the challenges of invisible disorders everyday isn't so simple.  I don't think there's one "right" answer, because everyone's different, and everyone's lives are different.  But there are some things that stand out to me, that help me.   

Simply stated, but something not so simple to do, is cheering myself on, giving myself credit for every effort.   Being proud of myself is really important, but it's easy to lose sight of this.  Noticing anything and everything, whether it's a big change from several months ago, or a very small step forward over a few weeks, is worthwhile.  For example, last year I didn't dare take walks in the winter because I was terrified of falling down.  This year, even though I'm still nervous, and sometimes walk very carefully, I've tried to get out of the house every day.  I also notice any time I am able to focus a bit more on the music I make when I play my flute.  I may feel off balance after playing a few minutes, and need to get reorganized, but I try to pay attention and feel good about what I did.  And though I'm still working on this, giving yourself some kind of  tangible reward for your effort is never a bad idea.

Being connected to people in a variety of ways is very important; your immediate support system (your family), your professional support team, and all the other people in your life.  Not just to be heard, understood, and to feel less alone, but also to be a part of THEIR life.  I think it's good to listen to people talk about what's going on in THEIR lives, to share.  Getting out of your own head, out of your own life is a good thing.  Thinking about someone else reminds you of what others deal with, of the world around you.  I know that there are times when each of us just doesn't have the capacity to be open to other people's stories, but hopefully most of the time we are, even if it's only for a few minutes.  Building and maintaining connections and relationships takes time and effort, but it's so important. 

It's not just babies who thrive when they get positive attention, validation - each of us does.   I couldn't imagine dealing with the unpredictability, the slight insanity of life all on my own.  People we have ties with help soften and cushion the hard parts, make the challenges more bearable.  And being able to find some good moments, moments of laughter to share is wonderful.  Hopefully I/we can notice the good, sweet moments that we create on our own, but we also need to share, to get help when needed, to build connections.  We are social creatures, and I think we need to embrace that.



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February 18th 2015 Keep on talking till people "get" it

By | Published Wednesday, February 18, 2015

VEDA occasionally shares a post from someone so miserable they don't know if they can take it anymore.  These posts are heartbreaking, but I'm always so glad when they reach out.  And it's wonderful to have the chance along with the rest of the community, to reach back to offer support and encouragement.  It also reminds me of why repeating myself a bit, like going over the same groove in a vinyl record, is a good thing.  My therapies work for me in layers, very gradual, thin layers and I'm beginning to think there's a similarity to how people learn about invisible disorders.  That talking about these disorders in bits and pieces, and sharing experiences helps people to "get" it.  Even so, sometimes I ask myself  "What is it about this situation, MY situation, that is so hard to get?"  People say things that truly surprise me, and I wonder if part of the problem is that when someone looks good, it's really hard to believe that something is really wrong.

Invisible disorders, to state the obvious, really are invisible.  They are there, felt and experienced, but cannot be seen.  You would have to see me in the routines of my daily life to see noticeable differences.  Like that I'm not sitting and reading a book, or magazine, or newspaper.  Instead, I am sitting with headphones on, listening to something.  That I'm not driving myself anywhere, but rather I am always the passenger.  That I take frequent breaks from my computer.  That I have to rest, with no stimulation at all, every day in the early afternoon.  Those are a few examples; my life is manageable because I work at it all the time. 

There are internal differences that no one can see, that I can feel.  Like the frequent ear popping/crackling I get when my sense of balance is getting reorganized, or my need to remember to breathe (my therapists talk about this a lot) so that my body relaxes.  The feeling when my brain shuts down and I know I need a break because processing anything else feels physically impossible.  And when my body is working hard, but it's not a time to shut down - like in vision therapy - and I feel heat radiating out of me.   There are so many things about balance, or health for that matter, that people take for granted and don't give a second thought to. 

Yes, I look good or at least decent most of the time.  Unless I'm having a really bad day, am utterly exhausted, and feeling sick, yes, I look what I guess you would call normal.  My eyes don't look funky, bleary, whatever.  If you look at me with my reading glasses, unless you're surprised by the slight tint, I look totally normal.   I don't look like I'm about to topple over.  I'm not constantly grabbing onto things.  I'm not holding my head in pain.  I don't look green in the face. Those are all things that people do when they are really sick, and thankfully that's not where I'm at now.  But I wonder if that's what people expect me to look like.  Basically, I wonder if people expect me to look different.

I am constantly reminded of the issue of how easily people can relate to whatever you're going through.  Do people "get" what you're dealing with? Or do people THINK they "get it," when in fact they don't.  Looking at the response to my post "What it all feels like to me" I was struck by how difficult people feel it is to be understood.   There's something about how it feels to live with the challenges of these particular disorders that's very hard to communicate.  And that difficulty to be understood adds a layer of difficulty to those living with the invisible disorders that cause dizziness, disequilibrium, etc.  I have a good friend who reads my blog who has told me that it's still hard for her to understand what it's like for me.  Perhaps it's because people think that dizziness comes, but then goes away and stays away.  It's easy to understand when someone can't do something because they're not able to use an arm or leg or hand.  Maybe it's hard to imagine, or think about what it's like, to feel dizzy or off balance doing really basic stuff.

I find myself thinking about what is or isn't normal, standard or average.   We hear the words "normal," "average," and "standard" a lot, but I don't know how much people think about what the words mean.  There's a surprising number of definitions that are given if you look up these words on Dictionary.com, so I asked myself how I think of them, and how *I* use them.  Average to me means that there are a lot of people who are the same, but there have to be people who are different as well.  That's really important because otherwise there would be no average.  Normal to me is something that also comes from being compared to what is not normal, or what is abnormal.  I think of a standard as a basic rule if you will, something to hold up against other elements and say "OK, this is a basic rule of thumb to go by." 

I don't think of any of these terms as negative, though the word average in particular often seems to have negative connotations now.  But in medical terms, average to me simply means there are a lot of others like a certain thing.  Normal can also get a bit dangerous, but in its' simplest term, it's a standard or rule of thumb for health.  The trouble with normal is that there is often a wide range of normal, or of abnormal, because we humans are all individuals.  However, all that being said, I know there are some things that I can't do that if I could it would be considered "normal," like the driving I mentioned.  There's no question that sometimes I don't feel normal, and I feel a whole range of emotions because of that.  I also think looking "normal," the fact that my disorders are invisible, is a very mixed bag.  I don't have to deal with a variety of stuff that people with visible disorders have to deal with, and I don't mean to minimize any of that.  I can, in theory, blend in. 

The problem comes when I have to share that I have disorders.  I think  "disorders" is a better word than problems because, right or wrong, "disorder" makes people think of medical conditions.  I can just picture the gears turning in someone's head - "but you LOOK OK."  And then phrases like "looks are deceiving," and "don't judge a book by its' cover," counter phrases like "seeing is believing", and "a picture is worth a thousand words."  Frankly, it can all get pretty frustrating.  I have an FB friend who's been dealing with her troubles for many more years than me, and recently commented that people just don't get it. 

I said earlier in this piece that I was struck by the response to my blog about how it feels, and truthfully it was hard to write about how it feels, and maybe that's part of the answer.  Explaining what sets me off, what it's like when it's due to an invisible disorder that requires treatment of some kind is definitely harder.  But in the end, all of us with invisible disorders keep plugging away, and I'll keep on telling my story, hopefully speaking for some of the others out there with invisible disorders.  And hopefully little by little, people will be more understanding, and will start to "get" it.


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February 11th 2015 Visit to my podiatrist

By | Published Wednesday, February 11, 2015

I decided to share the experience of my recent consultation with my podiatrist, Dr. W.  For one thing, I think the best way for people to understand and learn is for me to share actual experiences, and going to a podiatrist is less of a "typical" doctors' visit than, for example, going to an internist.  In addition, feet are pretty important for balance.  When Ron and I arrived, we were told they were updating info and presented us with a bunch of forms.  I really prefer when doctors tell you ahead of time there will be forms to fill out; I didn't think to ask ahead of time about forms since I'd been there before.  When forms can be downloaded so that Ron can do them at home, it's much easier.  Because of my vision disorder, Ron always has to deal with forms.

As I said, I've been to Dr. W. before, but this was my first time post invisible disorders.  He's a very nice guy, and also a good doctor, so in some ways I wasn't nervous.  I knew what the waiting area and examining rooms were like, what he was like, and had an idea of what would happen.  I was pretty sure I had an ingrown toenail, which is not just annoying, but sometimes painful.  I had been putting off dealing with it, I guess partly because it's human nature to put things off sometimes, but also because at times I feel like I've done enough doctoring to last me a long time.  But I decided it was time to deal with my toe before it got any worse. 

I never like sitting in examining chairs, or on examining tables because of the height;  I always feel better when my feet can touch the ground.   Tables are especially uncomfortable because there's no arm rest either.  In this case, I was on a chair.  After I sat down, I just tried to get acclimated, telling myself to breathe and that it would be OK.  When Dr. W. came in, he was very cordial, addressing me by my first name and remembering that he had met Ron at a previous appointment.  He asked me what was going on, and I explained that I had made the mistake of using a store bought insert in my winter boots in addition to the insole that came with the boot.  He said that was a common mistake - and one I certainly won't make again!  A note to everyone reading....fit matters! Even if you think the trauma to your foot is minor, over time it can cause problems.  That's what happened to me, and pain or discomfort in a toe can create walking problems - NOT something you want to deal with if you have balance troubles.

While Dr. W and I were talking, I was thinking about what I would say regarding my invisible disorders.  Though I've talked about wanting to use the word "vestibular" and be understood, I personally don't like the term vestibular, because realistically people don't know the term.  I really didn't want to have to give a complicated explanation, and vestibular wouldn't be descriptive of my problems.  I had enough to deal with just being there, and wanted to use a word I was certain he would understand.    So I opted to say I had a balance problem, and asked him to tell me ahead of time if the chair I was sitting on needed to be moved.  He said OK, and then asked for specifics, so I told him I had MAV, and a vision disorder.  I did not give any further info, as I didn't think it would be helpful. 

As I said, I like Dr. W.; he's got a very good bedside manner, and explains things well.  His only misstep was that at one point when the chair was either raised or lowered (I don't recall which) he said "This shouldn't bother you."  I didn't bother saying anything, but I thought "How do you know?  You don't really understand or know what will or won't bother me."  I would have preferred if he had said "let me know if something bothers you."  While I DO hope some people who know me well, will know that certain things bother me or are difficult, I don't expect people to really get how I FEEL.   Like a lot of experiences, especially given how individual MAV can be and that my vision disorder isn't super common, there's no way that someone can know exactly how I feel.    Understanding something intellectually is NOT the same thing as experiencing something; even Ron and the girls can't really know how I feel. 

In fact, sitting on the chair while it moved DID bother me.  I have a lot of trouble with my body experiencing motion that I am not in control of.  But unlike, for example the dentist, it really wasn't practical for the chair to move up and down without me.  If  a chair back is raised or lowered, I can sit up and then lower myself into the lowered chair, or vice versa.  But in this case, there was nothing I could do except breathe and do my best to get through it.  The worse part by far was the electric "sander" (I don't know what its' real name is) that's used to file down and smooth out a toenail.  I decided it was necessary for me because my traumatized toenail was so jagged from his trimming, and so thick, and the "sanding" does make a difference.    But feeling the pressure and vibration on my toe felt awful.  It sent uncomfortable vibrations all the way through me (no raunchy jokes please!), making me feel like I wanted to jump straight out of the chair.  I pushed through a bit and then told him I needed to stop.  Fortunately he said he'd done enough, and put the "sander" away.


To me the biggest challenge about going to a doctor's appointment is that I need to process whatever the doctor is telling me, but I also have to think about management.  I'm dealing with, and coping with my invisible disorders as part of the experience, which means a kind of multi tasking that is mentally taxing.  I got through the appointment, and I was glad I took care of a problem that thankfully was fairly simple, but it was draining.  I was tired.  When Dr. W. left the room, I told Ron I needed a couple minutes to get reorganized.  I put my shoes on to help me feel grounded, and sat in the one regular chair in the room (Ron was now standing).  I gave myself enough time to feel like I was once again grounded enough to go home, where I knew I could dial everything down a bit till I was ready to move on with the rest of my day.

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