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...

March 27th 2016 Meaningful activities, and a social life....

By | Published Sunday, March 27, 2016

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I know I talk about my two therapies - VT and FT - a lot.  That my rehab is important; in addition to my actual therapy sessions, I've never clocked it, but I'm guessing I spend at least an hour a day on rehab exercises.   I remind myself that this is good, that there was a time when I couldn't do anything at home.  Even so, doing rehab is not my entire life, not what my daily living is all about.



So what is my daily living filled with?  I know in many ways, I still run our household, and I don't want to sound like I'm whining - I'm glad I can do mundane daily tasks.   But what else is there?  Music is definitely one piece.  I will soon be in possession of a John Denver songbook, and I've been letting go of the "working on it" feeling when I play.  Letting my music just be.  That's good, but as much as I love playing my flute, I don't spend a great deal of time playing. 


There's also my writing.  When I get really into it, when I'm trying to figure out how to say what I really mean, that can be energizing.  I know I sometimes push myself to try to get that one more thought articulated.  "Is this really what I mean?".  I felt like that writing this very piece - "Am I making sense, will I be understood?".  I'm hopeful that with my new songbook, I'll get into the music as well, and be able to gradually increase my playing time. 



Writing is a wonderful, but solitary activity. Once upon a time music was social for me, but for now, it's solitary as well.  Listening to articles, books etc. is a worthwhile activity, and I'm happy I can do it.  But again, it's something I do by myself.  So where does that leave me?  Sometimes it leaves me feeling very frustrated.  It occurred to me recently that because of my limitations, when I try something, or have an idea, I REALLY want it to work out.  Given all the things I can't do, the road blocks I run into, I don't want to be disappointed when I try something.  But what I also realized is that it's precisely that situation - when it's difficult to figure something out - that's when it's the most important to keep poking around.  Keep trying.


I don't want to do something just for the sake of doing something, because to me, in the end that doesn't feel good.  I want to care about what I do; it's all part of that need to feel energized I wrote about in my piece "Find energy, feel joy...".  Doing something JUST to do SOMETHING can be just as much of a downer as inactivity. 



I mentioned in an earlier post this year that I became the liaison between the Membership Committee for my congregation, and the Youth Education Committee for the Sunday School, which overall has been good.  I've had a bit more interaction - by phone and online - with people, and I've contributed ideas for programs, a couple of which actually came to fruition.  I'm frustrated that some of my ideas may not go anywhere, at least for now.  But having a couple programs go is a pretty good batting average, and I'll keep contributing, because making contributions is important.  Feeling useful is important.



Maybe I'll find a way to get more involved with the Vestibular Disorders Association (VEDA) - I don't know.  What I DO know is that as far as what doesn't work, I have to say "OK, keep thinking, keep looking around,"  and maybe most importantly, "stay open, don't over-think it."  Limitations, and opportunity sometimes seem like an oxymoron.   But I have to believe that if I keep searching, stay open, and try to be creative, an opportunity can still exist.


I'm also opening this up to my readers with invisible disorders - what do you fill your lives with that gives you meaning?  If social life is a challenge for you, how do you handle it?  What do you do?  I'm hoping some people will share ideas, so we all can benefit.


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March 7th 2016 A glimpse into my world...

By | Published Monday, March 7, 2016

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Sharing info is important, but telling my story is important as well.  It's difficult having invisible disorders that very few people understand. I want people to have a sense of what living with my vestibular and vision  disorders is really like; sharing my story is the best way for people to gain understanding.  So I share what I like to think of as snapshots, glimpses into my world. 


Sometimes those snapshots really are like pictures, a moment in my life.  The other day I was feeling overwhelmed, thinking about the planning and scheduling I needed to deal with, and then I stopped myself.  I took a deep breath.  I said to myself "OK, slow down. You don't have to think about all of this at once. One day, one thing at a time." 


I've written about pacing (see my September 27th 2015 post). A big issue for me is the underlying planning that goes INTO the pacing.  At times I'm amazed at how much I have to think throughout my day about details, details that never used to enter my head.  I hate this planning that is now an integral part of my day, my life.


There's the household chores.  Do I have extra cooking to do, and if so, when will I do it?  Are there pots to wash? Is there laundry to do?  Sometimes it's pushing myself to deal with something because I know if I don't, I'll regret it later.


If I'm going someplace new, that requires a lot of thought and planning. Food is important; I need to avoid all my migraine food triggers.  Depending on when I go out, I may need to take a snack with me.  I have to arrange special meals if I actually have a meal in a restaurant.  Even if I've done the event before (like attending adult education at our Sunday School), I still need to make sure I'm not overloading myself.  Challenging myself is good, but only up to a point.  So I'm constantly looking at the calendar, both for a single day to see what I've got planned, and the overview of the week. 



Sometimes I feel like my schedule is too full of routines, but I know I need the routines.  They help me feel grounded, help me feel like I have a grip on what's happening.  Routines also - and this is really important - save me some brain drain.  If I don't have to think about some of the basics of my day, I have more energy for more complex thinking.  Cognitive processing takes energy, so I don't want to squander mine.  I want to guard it carefully - my energy is precious to me.


The fact that my routines are so important, that it throws me when they are disrupted, that it takes something out of me to deal with the inevitable curve balls of life, the way I have to THINK about all the pieces and parts.... sometimes fills me to overflowing with anger, frustration and sadness.  I want to scream at the world about the unfairness of it all.  Those are the times when I hate my disorders. 


I want to feel truly healthy, to have a day when I don't have any neural fatigue, to feel a kind of energy that I presume many in their 50's feel.  I want to have a day when pacing and planning, and planning and pacing, just doesn't matter.  A day when challenging myself doesn't make me feel what is hard to put into words.  Like my nervous system, my whole sensory system is just done.  My brain says "nope, not processing anything else right now," and I have to wait till the fog lifts. 


Thankfully, I now know enough about my invisible (sometimes even my own family forgets or doesn't get it) disorders to understand what's happening.  I know what to do.  I've been down this road long enough to realize that eventually the fog DOES lift.  So I pull myself together, and get on with it.  I do something that I know will help, so that my brain drain/brain fog lifts.  I'm still tired, but can continue to move through my day.  I remind myself that taking care of myself, all the pacing and planning allows me to function.   To be productive - perhaps not the way I wish I could be - but productive never-the-less.


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February 28th 2016 About my Feldenkrais Therapy....

By | Published Sunday, February 28, 2016

People hear about traditional vestibular rehab therapy - VRT - fairly frequently when there is discussion about non-surgical treatment.  You also hear about VRT as an alternative to medication.  VRT works well for some people, but not everyone.  I feel it's really important to find whatever treatment is a good fit for YOU.  Vestibular disorders tend to be very individual, so treatment is NOT one-size-fits-all. 

My MAV and CI caused, and can still cause, similar symptoms: dizziness and disequilibrium (being off balance).  When I got sick, I developed - as do many people - coping and compensating mechanisms.  Unfortunately, the compensating isn't always good in the long run.  Some of my compensating habits were obvious and conscious - like how I sat when I first got sick - but a lot of it happened on a neuromuscular level.  So I'm sharing some info about Feldenkrais Therapy - FT - since that's the therapy (in addition to VT) that works for me. 

I work with a certified OT, Joyce, who is trained as a Feldenkrais Practitioner.  The Feldenkrais that Joyce does with me works on the neuromuscular level I just mentioned, re-training neuromuscular habits.   I found out about her from a friend of mine; Feldenkrais was never mentioned by any of the doctors I saw.  This is unfortunate. I feel strongly that those who are suffering should be made aware of all treatment options, both traditional or conventional, and otherwise.  Patients should be given info and allowed to make the choice of what works best for them. NOTE: this is what I've learned and experience thru FT,  and is not meant to be a full neurological explanation of FT.

FT involves movement; I am in the process of relearning/retraining my body/brain how to do things with better balance.  I think that all the movements send new, good messages to my brain, and my brain absorbs it over time, and with repetition. Some FT movement is done by Joyce, sometimes by me under her guidance.  When people think of movement, they tend to think of large, or obvious movement: bending over, sitting down or getting up, walking, etc.  But movement can be very small.  Joyce often says that for therapy, small movements are better because you can notice things that are easy to miss with large movements.  I have found this to be true.  If you think that small movements aren't relevant, picture a set-up of dominoes.  One very slight touch to knock one over starts a whole chain reaction.  The same is true for your body - there is a domino effect all throughout your body when one thing moves.

Joyce works with me on a low, slightly padded table.  I either sit, or lie down, and sometimes at the end of a session I walk around a bit.  Just as with Ann, I give Joyce an update before we begin.  I talk about how to do things, how to be functional.  Joyce often reminds me of how everything in my body is connected.   She looks for basic things like how well I'm aligned, how I move (or don't move), how I'm holding myself .  During the session, I tell Joyce how something feels, or ask a question, but there is usually less general conversation during my sessions with her.  At the end of a session, she may ask if anything feels different, about my visual resting point, and horizon. 


FT is also about body awareness.  For me, part of this is muscle tension.  I want everything serving its' intended purpose. The key for muscles is to be holding, functioning, but not over-working and tight.  Muscle tension affects my posture while I'm looking at the computer, which can make visual tasks more difficult.  My posture while standing can also be impacted by tension, which can affect my ability to maintain my balance, and my line of vision.  Muscle tension is also, I think, a trigger for migraines; in addition to my diet, FT has helped control my migraines. 

Breathing is another element of body awareness: important for oxygen (brain function), and muscle tension, which impacts balance.  Joyce talks with me, and works with me re breathing, and Ann sometimes reminds me to breathe while I work.  When I'm concentrating on a task, I may tense up, and not breathe well.  I'm slowly improving at noticing muscle tension before I feel really tight, or even pain. I have also learned through FT that sometimes movement NEAR the source of pain rather than exactly where the pain is can be beneficial.  Because everything is connected, movement as low as your hips can produce movement in your jaw, and impacting the area less directly can be easier on your system.

Finally, a few tips I've learned:

1) Re breathing - do a body check, and think about how you're breathing and where there's tension - if I notice something, I make a change,

2) Try to sit gently, using your legs to help you,

3) Standing can also be done using your legs - I'm steadier if I pay attention to how I stand

4) Don't hurry; I'm more likely to miss something in my periphery or have some other problem if I start moving quickly.  We live in a fast paced world, but moving slowly, with purpose is really OK.

5) Lastly, a bit of sway is OK; it's actually more natural to let yourself have some movement, than to try to be completely static.  Obviously you don't want to fall down, but I find it's easier to stay balanced if I don't try to be totally still.  If I feel like I'm working too hard, I try to touch something, or find a place to sit down.

Book by Moshe Feldenkrais  - http://www.barnesandnoble.com/w/awareness-through-movement-moshe-feldenkrais/1111726550?ean=9780062503220#productInfoTabs

 http://www.feldenkrais.com/

Basic explanation of Feldenkrais - see Wikipedia link below - not the best explanation, but some interesting pictures... Though it says "it is not known if FT is safe or cost effective," I see no way it could be harmful... it is far less intrusive than surgery, and the movement is far more gentle than most PT.  Insurance coverage would depend on the company and policy you own.

https://en.wikipedia.org/wiki/Feldenkrais_Method



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