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My journey through Labyrinthitis, which has been somewhat like Alice’s journey through the looking glass. Vertigo hits and your world is spinning out of control!

Our Story…

Has a song ever ‘spoken’ to you so deeply that you felt it was written about you? I heard this song on a favorite T.V. show, “Grey’s Anatomy”. Okay, okay! I’ll admit it! I’m addicted to “Grey’s Anatomy”. I’ve always been interested in medical shows, both real and fictional. Maybe it’s because I’ve worked in and around hospitals for so many years. From my early teenage years, volunteering as a Candy Striper to my high school years Work/Study Program as a Nurse Aide, I’ve been around hospitals. I thought I would become a Nurse, that was certainly the plan. Instead, I married Mike at 18, I certainly found my voice then! Maybe it’s all the time spent in hospitals during  Mike’s 2 car accidents and Sarah’s car accident? One would think, I’d had enough. Nooooo! I seem to be obsessed with medicals dramas that put me in a state of panic, anxiety, and dismay! Why would I continue such dysfunctional behavior? I do it, partly because of my obsession and partly because they (sometimes) throw in a ‘happy ending’ story and who doesn’t love a happy ending?

I recently watched a re-run episode and cannot get this song out of my head! “Grey’s Anatomy” is known for the music played within the shows, but this episode was an actual musical! The first time I saw it years ago, I didn’t get it. I thought it was kind of silly. Maybe it was my mindset, who knows? This time, though, it hit me like a brick wall! One song, in particular, continues to haunt me…”The Story” by Brandi Carlile. First, the melody stuck in my head. Then I had to find the video on YouTube. I have watched probably 10 times! Then, I  had to find the lyrics. I said I was obsessed!  But I  find this song is so ‘us’…Because we all have a story to tell. Each story, just as important as the next. I’ve included an *excerpt* from it. Does this give a ‘voice’ to your feel at times?

The Story 

You see the smile that’s on my mouth

It’s hiding the words that don’t come out

And all of my friends who think that I’m blessed

They don’t know my head is a mess

No, they don’t know who I really am

And they don’t know what I’ve been through like you do

And I was made for you…

All of these lines across my face

Tell you the story of who I am

So many stories of where I’ve been

And how I got to where I am

But these stories don’t mean anything

When you’ve got no one to tell them to

It’s true… I was made for you

Written by Phillip John Hanseroth • Copyright © Warner/Chappell Music, Inc

I encourage you all, to tell your story. Whether it’s in your  private journal or a public forum such as your own blog. I have always found writing cathartic, so give it a try.  My story has sounded like an episode of “Grey’s Anatomy” at times!  Yes, I do have chronic illnesses, I also have had many happy endings! Life has changed since my Vestibular Disorder came knocking , no doubt, but finding my ‘voice’, has given me power in a sometimes powerless situation. Try to find your voice because we’re listening!


http://www.vestibular.org 

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Expect Detours Ahead…

Holidays usually bring to mind, special memories created with family, friends, and workplace (a crazy office party?).  I/we have had many years of happy and fun holidays. From my childhood to Mike and my first holidays to the first with our children and now our grandchildren. Then I became ill… Chronically ill…I’ve spent many years since, attempting to recreate those ‘pre-illness’ holidays. I can’t do it, I just can’t do it. Holidays now can represent more stress than fun. From the decorating to the baking and gift buying, it was ‘dizzying’ in itself!  I do have plans for  great holidays this year, but I also know to expect detours. Planning ahead, for me, has become essential. I’m talking about planning ahead for the ‘what if I get dizzy/nausea/sick while I’m cooking/socializing or whatever’ situation. You know, a backup plan, for your plans!  We have missed countless family occasions since Labyrinthitis hit in 2003.  The possible memories lost. This year, it will be different, period. It will be different because I have  backup plans for my backup plans!

I’ve learned planning and pacing are crucial.  This year, I am going to do something I’ve really missed and that’s baking!  For many, many years all my gifts were baked goods or homemade/handmade something. The first year we gave ‘purchased’ gifts, our families were visibly dismayed! This is a huge compliment, of course! But, the fact of the matter is, I am no longer up to the days of giving a box (9″x9″x5″) of homemade goodies. Three layers deep of 6-8 varieties of total decadence! I used to bake Baklava, make Chocolate Truffles, Various Nut Brittles, a huge variety of cookies, and bread (Pumpernickel is our favorite!).  This holiday season I won’t stress to bake a dozen leaves as I used to, but I will bake at least one loaf. This year, I will pick two or three of the other goodies to do. Yet, likely may only get one done. It’s alright. It really is.

I do my best not to dwell on all I can’t do any longer, it’s not healthy, I realize that now. After many years of doing just that… My number one goal this season? Make our grandsons happy and look at life through their eyes for awhile! As much as I loved Martha Stewart style decorating of years ago, I think she made women stress to be perfect. I was one of those women. Now, just getting the Christmas tree up and decorated is a huge accomplishment! One year, we settled on a Charlie Brown style tree, a live tree, but almost dead. As I  placed the few, tiny ornaments, needles dropped profusely. That was our Christmas tree that year! Pitiful, but it sufficed. It was one of the years our grandsons weren’t here. That year, I crawled into bed and waited for New Years, this is ‘Holiday Blues’ in its purest form. It’s not always just the children that lose when their parents divorce, grandparents can get caught in the mess also. That’s our case and it sucks, to be honest. Christmas is a religious holiday for some, of course, but I feel it’s mainly for the children.

I love the aura the Christmas season brings. The decorations, the lights, the smells, the sounds…I’m sick of missing out and I’m sick of being sick. So just how can I change this situation? I have my backup plan for the ‘ifs’, if we get invited to a gathering or if we invite people or if…Here’s how I anticipate handling plans not going as planned…

  • Mike is always essential to my backup plans. He knows that look. He sees when I’m struggling or nearing an overload. He’ll come by me, hold my hand, put an arm around me, steady me.  He sees me sweating profusely. Prior to this, I never sweat, seriously, never. So he either pulls a chair over or we go sit on a couch for awhile. A quiet bedroom is even better. Get my bearings and try again. Having a ‘wingman’ in your corner is important.
  • I no longer even try to hide the fact that I do have issues because I was ‘lucky’ enough to get a Vestibular Disorder. I talk to others about it. I try to raise awareness of Vestibular Disorders whenever I can. It may not be the best party talk, but I’d rather talk about it than have others make assumptions…”How much did she drink”? I don’t drink any longer, there was a time I did, but it doesn’t ‘mix’ well with dizziness…
  • Pacing myself has been a ‘given’ for a long time.  Life is scheduled so I always have a nap/rest time, before or after whatever. This is one thing my family does know and accept about me. “Margaret needs her nap”…  It’s okay, I promise you!
  • Driving around to look at Christmas lights and decorations used to be a family tradition, but can be difficult now. This doesn’t mean that I don’t try to go. It means it may be a shorter ride. It means Mike would scope out an area that had static lighting (not blinking), I can handle that better for some reason. It means I might get dizzy, but I will try.
  • Last year, I (finally) told my family that I just could no longer do Christmas gifts. It literally broke my heart, but on the other hand, I felt a sense of relief. The stress of getting out in the holiday chaos had become overwhelming. I continued to load my old responsibilities on Mike, holding him to my old standards. Guess what? I never planned my backup man could overload! It was unfair of me to do that to such an important, irreplaceable ‘wingman’. Think about talking to your families about backing off of (or out of), to save yourself…You might be surprised and they ‘get’ it now!
  • Know that the ‘Holidays Blues’ is a real thing. Be mindful of your Mental Health during the season of happiness. Reach out. Talk with someone. Get help if needed.

Most of all, I hope you are able to enjoy this time of year with loved ones! May it be everything you wish for.

It’s Not Selfish To Put Yourself First

In your life, you’ve likely held many roles, such as a student, an employee or employer, a wife or husband, a caregiver to a parent. Life at certain times dictates that we put others needs first, such as when you have children. Of course, they have to be first, they are totally dependent on you and for 18+ years at that!. We, the chronically ill, have certainly been the center of attention for many months or years dealing with your Vestibular Disorder. I doubt that was enjoyable for you, all the questions, the testing, and a diagnosis you didn’t ever want in the first place. For me, it was two years of true Vertigo and Nystagmus and yes, all eyes were on me (watching me fall). This kind of attention can wear a person down. Privacy becomes a thing of the past. Even though it was done ‘for my safety’, it still  felt an invasion of my privacy. Being the center of attention is not the same as putting yourself first and doing so is not selfish, it’s you taking care of self. At some point, we have to put ourselves first and cherish the mind, body, and soul that needs nurturing. How do you take care of self, without feeling selfish?

As a child, I watched my mother give selflessly for all of her children for 18 years (x4). She was a stay at home mother, by choice, as she was a College-educated woman. She instilled us all to become self-sufficient adults, but somewhere along the line, I got the ‘message’ that it was selfish to put yourself first. Maybe because I don’t remember her doing that. Her role in the family was multi-faceted, but being the caregiver was her most treasured role. What a surprise that I too have the caregiver role in my family! Since my 2003 diagnosis, family roles have been thrown up in the air for sure. My husband (the provider role), had to hone his caregiver skills. He was an involved dad, changing diapers,  bathing, feeding, learning  you can do all kinds of housework with a baby on your hip! By the time I got ill, though, his skills needed some coaching. He’s since taken over the grocery shopping and most errands. He vacuums and mops, he’s a keeper for sure! He’s never says anything but praise for me and ‘all I do’ for the family.

Personally, I struggle with all my loses…but, I’ve  begun keeping a Gratitude Journal. I’m finding my lists of losses grows shorter as the gratitude list grows longer. I find myself being grateful for the ‘little’ things, such as surviving a recent two-hour grocery store debacle! Yes, I said two hours…the store had rearranged all the isles, so it took about 3x longer than it should have. In reality, this was a good thing, as it can be considered VRT. I was miserable after about 1-hour, but I was doing it, that’s something to be grateful for! I’ll be honest, I wanted to bail on Mike more than once and I was totally draped over the shopping cart by the end…I did it,though! Happy dance! I was absolutely zapped the next day, my head was swimming, I felt off balance, my out of shape body ached all over. In the past, I was getting massages 2x a month, but I can’t afford to do that any longer. So, how could I treat myself while having no money? One way is to get in our hot tub and relax. I am blessed to have a hot tub.  That was my gift to myself years ago (well, I guess it 2004 for the Fibromyalgia), so to use it now doesn’t cost a penny! It’s still a treat and extremely relaxing…

Some other ways to treat yourself for little to no money:

  • Take a bath or shower…linger…(light some candles, put in some Epsom Salts…)
  • Start your own Gratitude Journal (just a spiral notebook will do)
  • Sit outside and enjoy nature. Look above, below and all around. Then, close your eyes, taking in all the sounds and smells
  • Watch a new or favorite movie (Beaches anyone? Four Rooms?)
  • Give yourself an easy body scrub using sugar and vegetable oil (I do it in sections over a couple of days, as it does take energy to do a scrub)
  • A manicure or pedicure (even if you’re the only person to see it)
  • When was the last time you turned the phones off and read a book? Make it a ‘real’ book (not a Nook). I grew up with a home library with all the Classics and more. A book has such a comforting scent to me…
  • What about some ‘guilty pleasure’ T.V. shows? Real Housewives or Toddlers and Tiaras? Trash T.V. at it’s best!
  • I’m an Art lover and used to go to Museums, but now, thanks to the internet, you can take a tour of Museums from all over the world.
  •  If you can help another person, just one, do so. I can’t tell you how great this can make you feel! Can you really put a price on making someone smile?
  • Listen to your favorite music or try something new. YouTube rocks for this! The first 2 or 3 years of our marriage, music was all we had, as we didn’t yet own a T.V. I should have never bought a T.V. as watching it can be so consuming. It’s all about balance (it really is for us Dizzies!)…
  • Dig out that old hobby that was left by the wayside when you became ill.
  • Meditate…
  • Do some Yoga stretches. There are many I’m unable to do because a particular position makes me dizzy (Downward Dog)
  • Play dress up! When was the last time you wore high heels? I occasionally get all dressed up, just to lay in bed, because I miss my heels…I can’t walk in them, yet am not ready to get rid of them!

I hope you see the importance of taking care of self. We may not have control over many areas of our lives, but we can do something to make us feel better. If only for a short while. These Vestibular Disorders take so much out of us. Isn’t it time to put yourself first? Give it a try, I think you’ll enjoy it!

The Decision…

In the above picture, the story goes, I said to one of my cousins, hands on my hips, “You’re not the boss of me”! Oooh, Little Miss Sassafrass!  What a little spitfire! What happened to her? I search deeply into my eyes for that Margaret, with that spark, but what looks back are eyes that have been through a lot, seen a lot. Too much for just one person, one family to have lived through in 43 years of marriage. Mike is my main caregiver, yet has survived 2 near fatal car wrecks, the first was a rollover with ejection from the truck. The second, a drunk driver ran into a crowd hitting Mike. He was drug under it for 75 yards. I watched in horror as he disappeared into the darkness. We had just been sitting and talking…Here’s an example of how different we all are, I wound up with PTSD and Mike has nothing after that experience. I wish my Vestibular Disorder was the only stressor in my/our life, but it isn’t.  I wish so many challenges hadn’t been put upon us, it wasn’t fair, it wasn’t right. But, if I hadn’t gone through them, I wouldn’t be who I am today, either. I struggle to find my identity, my new identity.

So much time has passed since my diagnosis in 2003, you might think I should just have ‘accepted’ it. I ask you, would  you just accept it? Don’t you think hope would remain? We are all survivors in this game called life, in one way or another. For some, just to wake up another day is something to be celebrated, and it should! Others, like us, too often wake up with a feeling unrested, having a ‘foggy’ brain and the sense of uncertainty (will I have symptoms today?). If we’re lucky and it’s a no symptom day, then, we celebrate! If we wake to a world off-kilter, the feeling is more  one of dread. I chose hope and I am a person of Faith, so I hang in there another day. In all this time, though, Science and Research chugging along, making progress with certain Disorders and continued confusion with others. I feel the biggest confusion comes from doctors  not taught nearly enough about the Vestibular System (the 4 Systems involved). I could never have become a doctor, their responsibilities are mind-numbing! The truth is, if something doesn’t change, there will only be more people in my position. Then, they too will be forced to make a decision.

The decision to go on Disability was one I did not take lightly. First, and foremost, I felt shame. I worried what others would think about me. I know people using the ‘system’, people who didn’t really need it and that pissed me off. Obviously, I didn’t want to be perceived as one of ‘those’ people. It was seven years of working to ‘get well’. Seven years of keeping up my Continuing Education and license, because I was going back to work, after all. Yeah right! It was seven years of learning everything I possibly could about both my Vestibular issues and the Fibromyalgia diagnosis. I have no doubt, I had Fibromyalgia for over one decade before diagnosis. Their overlapping symptom? Dizziness. I changed so many aspects of my life in this attempt. I changed my diet (just a healthier diet), my sleep habits (sleep hygiene), and tried to lower my stressors (never happened). I started numerous exercise programs, but my balance continued to hinder my success with anything but yoga (Downward Dog is out). Discovering the Wii did more than just games, I found the ‘evaluation’ Wii used, addressed balance and it was fun! Hmmm…I need to reclaim it from the grandsons’ bedroom, bring it back into the living room. After seven years, I gave up the concept of returning to work and began the process to apply for Disability. Was I one of those people now? Oh, what shame…

I did have help with the massive amount of paperwork, not a Lawyer but a Social Worker. I’ve heard nightmare stories of people’s attempts to obtain Disability. Lawyers are puking out  television commercials to ‘help’ you get what’s needed, what you and I spent our lives working for. Every paycheck, it was taken out of our checks, like clockwork. What really sucks, what about all the women who chose to be a stay at home mom? I was one for 15-years, and I loved it. I took pride in doing it, but it left me with huge empty chunks on my Social Security. $0.00 is your value while raising children here.  In the USA, to qualify for Disability, it must be ‘proved’ that you will never be able to return to work. Now that, was a big pill to swallow, never…really, never? Actually, you can try to go back to work with a 9-month window allowed.

For me, I was approved the first time and paid  3 months back payments (don’t get mad!). I have no idea what was done (or not done) differently, but it was not the stressful event my mind had imagined. I feel for those who are having difficulty with the process. Because when you feel like we feel, we do not need this extra stress. Part of the problem is political. I feel our money has been tapped into one too many times.

My Vestibular issues aren’t my only health issues. I also deal with Depression, Anxiety/Panic Disorder, Fibromyalgia, Sleep Disorder, IBS, Ulcerative Colitis, Reflux, with the PTSD and Vestibular Disorder to round it all out. Oh, and I also had Thyroid Cancer in 1994. I was still in school when the doctor called with the “Margaret, you have Cancer”call. I had 2 months left to complete my rotations, for school to be over! I gave him the, “I’m too busy right now. I’ll get back with you” answer. Stupid, very stupid I know! I had the surgery 2 days after sitting for my Board Exams. Putting this all down on paper it’s shocking to even me! It’s crazy, I know, but some of us are just that lucky…I want to scream at the top of my lungs to all my illnesses, “You’re not the boss of me“!

 

 

http://www.vestibular.org

 

 

 

 

Still Working On Team OT…

For the past few months, I’ve worked diligently on VRT, but using  Occupational Therapy philosophy this go around. There’s no ‘miracle’ to report, but what has changed is my activity level and that can’t be ‘bad’. I’m also, using a mindfulness approach, which simply put I am forcing myself into really thinking how I go about my day. I’m working on my posture. I’ve talked a bit about how OT looks at every area of our lives and how we do it. I’ve made simple modifications at home. Also important is energy conservation, considering how much energy it takes for say, showering or running errands. Do you really have enough energy on this particular day, to do both tasks? Showering and washing my hair are very exhausting tasks for me, I know, it seems so simple, right?  I’ve done all these things. I consider these things now, throughout my day.

Yet, I still can’t invert my head without dizziness. Think through your day. How many times do you bend over without a thought? “What IS that under my bed”? “Do I really want to know”? Bend over to wrap a towel around your wet hair? Bend down to dry your lower half? Doing a somersault? Okay, I’m joking with that last one, but the list goes on. Just take a count of how many times you bend over in your daily life? It’s probably many more times than you think. How might you handle it?  One reason I’m working on my posture is due to an accommodation I’ve picked up from the beginning of my Vertigo. Accommodation is something we do without consciously thinking about it. We do it in order to complete the task. An example of accommodation: In a seated position, you need to reach for something above your head, just out of reach. As you reach, your hip (on the same side) raises off the seat.Try it yourself, you’ll see. Besides, I kinda like my 5′ 10′ self!

Since I’m unable to hang my head down when bending over, I began hyperextending my neck, which is not good for us. It pinches Cranial Nerves causing numbness, tingling and more in my arm. I recently discovered I have two Cervical Vertebrae that are so offset, the Neuro-Surgeon thinks I likely ‘broke my neck as a child and don’t remember it’. Really? Yes, I still live in the same place as my misdiagnosis of a Vestibular Disorder. No, I’m not having anything done at this time for my neck as he wanted to use surgery to repair my ‘broken neck that I don’t remember’. What happens when I hyperextend my neck is distressing. My left arm goes completely numb. I can still move it, use it, but without feeling what I’m holding, accidents can/will happen. I began using neck exercises from an early round of PT, no improvement. I’ve seen my MRI pictures and there are two vertebrae that, at some point, will likely require surgery. It won’t be done here, though!

Some of the modifications I’ve made to my home:

  • a shower chair is essential! I use it in the shower and when my husband colors my hair (don’t be a hater!)
  • my furniture is arranged for both tactile cues and a place to plop should I become dizzy
  • food prep: I sit at my kitchen table
  • laundry: I sort clothes with my feet. Then, in kind of a football stance (bending at my waist with neck extended, which is not good for us! I load/unload washer/dryer.  I’m working to get my husband to build platforms for the washer/dryer set, then hardly any bending would be required
  • I’ve recently begun using a cane (VERY reluctantly!), after a recent situation I couldn’t get out of, my husband’s medical testing. I had to maneuver some very difficult solid white hallways. White ceiling, floor, and walls. I had to take 2 breaks and had non-medical employees ask if needed help, very nice! I am using one from our daughter’s accident. It’s functional, which translates to ugly. If I’m going to start doing this regularly, I want a ‘pimp cane’!

These are just of few of the modifications I put into place, making my home safer, as I do believe seven broken bones is enough for me.

vestibular.org

When Even Loved Ones Don’t Understand…

You might think our loved ones would be the first and the best of our supporters in this journey. I am blessed, truly blessed. I have a husband who became my biggest supporter and advocate. He gets just how difficult life has become for me. Maybe because he actually sees me as opposed to a phone conversation where I say the usual, “Oh, I’m okay”! Then quickly turn it around with, “How are you”? The caregiver in me always comes out, as it’s part of me. When I came down with Labrythnitis, Mike stepped up to his new challenges and there were many! We had a ‘traditional’ marriage prior to this unwelcome and uninvited monster bursting into our lives. He didn’t complain how our life was before life forced him to learn the definition of ‘Vestibular Disorders’. I was working. He was working. And I did everything else, you know, traditional. Waa Waa Waa…! I acknowledge I’m lucky, as not everyone has this kind of support or that kind of husband! I think my adult children get it and I’m educating my two grandsons. The oldest one recently said, “But Memaw, I remember you jumping on the trampoline…”, he was referring to the Sensory Room at my work. That was in 2007 or 2008. Childrens’ brains are sponges! So he does remember me as a fun person, which I was.

I just want to be understood and accepted, like the old Gospel song, ‘Just as I am…’ Isn’t that a universal wish? To be accepted? Just as we are…now. I will be the first to say, ‘I wear my heart on my sleeve‘. When I love someone or something, I’m all in and there will be no doubt of my feelings. A more truthful statement might be, ‘I wear my emotions on my sleeve’. Otherwise, I’d wouldn’t feel so hurt by loved ones not understanding what I’m going through. I have a belief system I suppose, ‘Well if they really loved me, they’d get it’. Am I alone in my beliefs? Am I still lacking maturity at age 60 (and why do I even care)? Do I expect too much of them? Just how do I appear to them? Do they not see my challenges or do they think I’m faking this nightmare? Are they ignoring me because of my Vestibular Disorder? Have I missed too many family occasions or hurt someone unintentionally? Do they think I want to be like this? Ooooo! I’m getting myself mad now because my truth is, hell NO, I don’t want this! Who would? I am dealing with what I’ve been given. It’s not fair. I’ve learned that lesson with all the other life ‘events’ I’ve had thrown into my lap.

One of my siblings recently found my blog through Linkedin. “Gosh Margaret, I had no idea you were still going through all that, I’m so sorry”. On one hand, I felt a little frustrated, on the other hand, I felt heard. The later feeling meant more…Another sibling told me, “Margaret, when are you going to realize your life is God’s shit screen”? Oh my God! What does that even mean? These are their made up words. Please don’t be offended, I carry enough for all of us. I just sat there, mouth gaping, eyes glaring, and speechless. Yes, those stupid words cut me deeper than a sword and I am having such difficulty forgetting them. I know I should focus on forgiveness, I suppose. The truth is, Mike and I have had a life unlike anyone else’s. We’ve had the highest of highs and the lowest of lows. In 43 years of marriage, we have started over 4 times due to unforeseen, unwelcome and uninvited life events. My siblings have not experienced such events and I hope they never will. We don’t need to be reminded how tragic our lives have been by anyone, much less a loved one. For my personal emotional health, I’ve  had to turn it over to my higher power. I’ve let the painful (stupid) comments go, kind of…I believe there are such things as ‘toxic’ relationships. For our own health, for us to get better (whatever degree that turns out to be), we cannot be in such relationships. They are called this for a very valid reason. It will poison you. It will deplete you of energy you need for other things. They will make you cry. A toxic relationship is unhealthy. Period.

I have always considered myself an Optimist, but this Disorder has, bit by bit, worn me down. Not worn down as in gone. Worn down as a rock does over time with the constant flow of water. Drip by drip, over time, eroding it away, until one day, it reveals a hole. The rock remains strong, yet is now allowing the water to flow through it. This is the true meaning of ‘go with the flow’…If a rock can change over time, to just ‘go with the flow’, so can I. So can you!

vestibular.org

We Are Due Change!

Oh, my! It has been a long time, a very long time since I felt this sense of accomplishment. I am one of many Vestibular patients that were misdiagnosed and in being told we have one diagnosis when it’s actually something else. So many of us are told the same thing, “It would seem you have Labyrinthitis. It will be over in one month…”. WE know better, we who have been forced to do our own research, and in doing so, we know there are at least 20+ Vestibular Disorders. Why don’t our doctors know this? There is such a lacking in how our doctors are educated. I’m talking worldwide people!

So, through my involvement with VEDA, I have met some amazing, inspiring, and knowledgeable people. I’ve met other awesome people through the Facebook Support Groups and my blog (all in virtual reality!), as we are from all over the world. This past week, I was asked to help write a petition to the World Health Organization (WHO). We worked for days, going back and forth, all over the world. I find this so wonderful, connecting with passionate, like-minded individuals who want, I mean demand, accurate diagnosis for Vestibular Disorders. I could easily go on and on about this, but I want to just share the link to the Change.org to read our petition. We did not write this just for us, we wrote it for YOU! You deserve an accurate diagnosis, we all do!

https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care

I hope each and every one of you, I mean you my wonderful, beautiful readers in the:

  • USA
  • United Kingdom
  • Canada
  • Australia
  • Ireland
  • Netherlands
  • Belgium
  • Greece
  • Italy
  • Brazil
  • Poland
  • Germany
  • India
  • Singapore
  • Argentina
  • France
  • Bangladesh
  • Croatia
  • Spain
  • Barbados
  • Malaysia
  • Romania
  • Oman
  • Mexico
  • Venezuela
  • South Africa
  • Philippines
  • Dominican Republic
  • New Zealand
  • Finland
  • Ecuador
  • Albania
  • Norway
  • Trinidad & Tobago
  • Peru
  • Denmark

Will you please read the petition and SIGN it today, then ask one friend, one family member, and so on to do the same. This could be HUGE!

vestibular.org

I’m Team OT this Time Around…

I’m not sure if it’s because VEDA has their upcoming Balance Awareness Week (September12-18), or if I am making an experiment of myself, but I’m going to whole-heartedly do VRT, again! Yes, again, after these many years! This time, though, I’m applying what I knew best, Occupational Therapy Based VRT. I’ve pulled out resources and this is my plan (do not do this yourself!), I look at my ADL’S or Activities of Daily Living, which simply put means, what do I do in my daily living (showering, housework, cooking, etc.). A great example would be the loading/unloading of my dishwasher. I have to visual scan what is in there and Motor Plan where and how to complete this task. I know I’ll get dizzy if my head inverts (upside-down), so I incorporate a squat to keep my head in a more neutral position. Raise up, turn body in the direction needed (still having trouble with quick head turns). I have to tilt and turn my head in putting away my dishes. It’s all done very ‘mindfully’, I really need to concentrate on the activity. I’m lucky, my kitchen is a Galley style (two sides facing each other), so there’s not much area to take a fall. I always think about my fall risks, as I’ve broken seven bones. Below, I’ve listed the areas an Occupational Therapist evaluates. As you can see, it does involve every area of one’s life, even Sexuality and Spirituality! At my worst, sexuality was the last thing on my mind, but on a good day…I continue with amazement with all Occupational Therapy entails. I’m giving you some insight, there are options with VRT.

*This is NOT for you to ‘treat’ yourself, it’s simply for a look at another side of VRT.

 

Appendix 3. Examples of Impact on Activities of Daily Living

*Eating: leaning across a table to pass something

*Bathing: bending to reach the legs, feet, perineal area, closing eyes to wash hair

*Toileting: bending to wipe, bending to pull garments up or down, maintaining balance      while standing to urinate (males), twisting to reach toilet paper if behind toilet

*Transferring: sit-to-stand transfers from toilet, other seats

*Grooming and hygiene: bending the head forward to groom hair or brush teeth

*Taking medication: bending the head back to swallow medication

*Sexual activity: being in the superior position and weight shifting or moving the head rapidly; stability on water bed or other positioning furniture

*Sleep: head movements during sleep, changing sleeping positions, or maintaining the head in certain positions during sleep will elicit vertigo and cause waking, possibly nausea, and disequilibrium while groggy

*Instrumental Activities of Daily Living
Meal preparation, cleaning, other home management skills: Bending down, looking into  high or low cabinets or shelves, and tasks that require repetitive head movements may all  elicit symptoms. Task performance may be compromised or the task may be abandoned  altogether.

*Gardening, yard work: Tasks may be performed less efficiently or abandoned; falls may  occur on uneven ground.

*Vehicle care: Car washing and changing oil and filters may be difficult or impossible.

*Child, elder, and pet care: tasks that involve picking up and carrying loads, bending  rapidly, performing or assisting in transfers, diaper changing, cleaning up messes on floor

*Community mobility: Driving will be more difficult, especially under conditions of reduced visibility, and may be abandoned or performed only for limited errands.

*Shopping: Navigating stores, carrying packages, bending to pick up items, scanning shelves for items will be more difficult and may be abandoned.

*Safety: ascending/descending fire escapes and stairs, dim areas with only emergency lighting

*Play, leisure, social participation, religious activities: Visual motion sensitivity, difficulty kneeling, navigating in crowds, vertigo elicited by repetitive head movements or bending the head down; activities and rituals may be severely restricted or abandoned.

*Work, either paid employment or volunteer jobs: Symptoms elicited by a wide range of tasks will cause reduced efficiency and sometimes total inability to per- form some jobs, depending on task demands.

Appendix 4. Examples of Performance Skills Affected by Vestibular Impairments

*Posture: Standing balance is impaired in most people with vestibular impairments. People may tilt the head and/or body off the vertical. They may have difficulty attaining and maintaining upright standing. This skill is particularly difficult when visual cues are absent or decreased. Static head and trunk posture while seated are sometimes impaired; dynamic sitting balance may also be impaired.

*Mobility: Mobility skills are manifested as veering toward one side while walking, ataxic gait, and falling or stumbling, particularly on uneven surfaces. Load compensation skills are impaired. Clients may need to use light touch to improve orientation and stability.

*Coordination: Dual-task performance skill is decreased.
*Energy: Routine tasks take more energy than usual, and endurance is decreased.

Appendix 5. Examples of Performance Patterns Affected by Vestibular Impairments
*Habits: Skill components of habits may be disrupted, and performance efficiency may be reduced, increasing the cognitive load and increasing the difficulty of performing habitual skills that were previously easy to perform (e.g., basic activities of daily living may have to be performed with modifications).

*Routines: Due to effects on performance skills, routines are less efficient and may need to be changed or abandoned altogether (e.g., hair washing may require supervision for safety and may take too long in the morning before work, so the client’s morning and evening routines may be changed).

*Roles: Some roles may be reduced or even abandoned, with consequent detrimental economic and psychosocial effects (e.g., clients with Ménierè’s disease may have to leave their jobs).

Appendix 6. Examples of Context Affected by Vestibular Impairments
*Physical: The physical environment may require modifications for safety (e.g., installing bathroom grab bars), or the home environment may require significant change (e.g., removing throw rugs, changing lighting patterns).

*Social: Misunderstanding of symptoms and problems by family, friends, and significant others may lead to hard feelings, reduced participation in socialization, changes in preferred social environments. These problems may occur due to decreased self-confidence, fear of falling, and a history of falls.

*Spiritual: Falls, vertigo, decreased concentration, and decreased ability in dual task performance, which all lead to decreased performance in vocational and vocational activities and decreased participation in the community, can cause decreased sense of self-worth, self-doubt, and decreased joy in life.

*Virtual: Visual motion sensitivity may lead to avoidance of virtual environments.

Appendix 7. Examples of Activity Demands Affected by Vestibular Impairments

*Timing: Tasks may take longer than before.

*Space demands: Lighting, flooring, and support surfaces may have to be changed.

*Social demands: Reduced social interaction per task may be required due to reduced tolerance for auditory and visual noise.

*Required bodily functions: Reduced function of vestibulo-ocular reflex, vestibulospinal reflex, and reduced spatial orientation skills all affect functional performance.

Appendix 8. Examples of Client Factors Affected by Vestibular Impairments

*Mental functions: reduced attention skills, reduced ability for dual task performance

*Sensory functions: reduced vestibular function, sometimes reduced auditory function

*Neuromuscular functions: reduced postural control, reduced dynamic visual acuity, impaired gait

*Vestibular labyrinth: In some instances, structural abnormalities in the physical labyrinth may be present, but these features cannot be observed; they may only be inferred.

*The American Journal of Occupational Therapy

Downloaded From: http://ajot.aota.org/ on 08/11/2016

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Propio WHAT? Understanding Our Proprioception System

Where am I in ‘space’? Am I laying down or standing up? What kind of surface am I walking on? For those of us with Vestibular Disorders, we’re likely to ask ourselves, “Am I really going to fall down?”.  Have you ever wondered how we know these things? We have receptors located deep within our bodies that unconsciously respond to the ‘impact’ (the weight or lack of weight) put upon the joints, muscles, tendons and ligaments. This feedback or sensory input travels back to our brain, where it is processed. Unconscionably!  Our bodies and brains are such unbelievably amazing creations, I am in awe. Without getting too medical (which I easily can), I want to try to explain this amazing system of Proprioception and why it’s so important for those of us with Vestibular Disorders.

The facility I worked a dozen years, was located next to a playground specially designed for children with disabilities. I loved taking my little clients there for therapy, as the equipment there made it easy. An example of a session might include,  walking or marching over while asking or telling them “Are we marching on a bumpy or smooth surface? How does it feel to your feet?” Some might say, ‘It tickles my feet!” while another say, “It hurts my feet!”, walk the perimeter of the Park (mostly a flat sidewalk, but also up and down ‘waves’ in it). Then, sitting atop a ‘rocket’ or ‘dinosaur’  rocking toy, swinging, climbing, or sliding…Whew!  All these activities activating their Proprioceptive and Vestibular Systems. I once did all these things, right beside them with ease (that’s why they liked me best! hahaha!). Now, just to sit in a swing and raise my feet off the ground makes my stomach turn over. Why? Because without the added input I get from my feet  on the ground, I get dizzy. My Proprioceptive System is off kilter! Not knowing where I am in space, for just that split second, can cause tremendous disorientation in me. Then, add to this, our visual issues (double vision, Nystagmus, etc.), and the VOR (Vestibular Ocular Reflex), and you have the perfect storm for taking a fall. I fell, again and again, breaking seven bones during the worst of my Labyrinthitis, yes I said seven! I broke my tailbone alone, three times! There definitely was a period of time I didn’t want to move! Once VRT began, of course, I was pushed (forced) to move around in space. I wanted to be bubble wrapped! My PT encouraged me to ‘stop watching the floor’ and ‘touching walls’. I did make progress, I really did, until Sarah’s accident (Into the Great Unknown… Part 1). I put others needs before mine (caregivers curse?) and again, I became ‘lost in space’, back to looking at the ground, back to wanting to touch a wall, yet once again…

When one of our ‘operating systems’ are under or over stimulated, another system kicks in to help compensate, or it shuts down altogether. The human body is such an amazing creation and most of us (me!) take advantage of our bodies at some point in our lives. Be it through lack of sleep,  getting proper nutrition, over indulgence in alcohol, smoking, etc., most of us have something we could do better for our amazing bodies. Receiving a ‘dual’ diagnosis within a year (Labyrinthitis and Fibromyalgia) was quite overwhelming. Both of them wear you out! Both of them have ‘dizziness’, ‘fatigue’, and ‘brain fog’ listed as  symptoms. So many overlapping symptoms, how do I know which is which? The biggest difference is the unrelenting pain that comes with Fibromyalgia. The thing they have in common? For both, I should be moving more than I do…

Having a Vestibular Disorder, though, makes me NOT want to move. I have found this to be a common ‘side effect’ in my research and it all says basically the same thing (that I don’t want to hear!), MOVEMENT helps or cures for some, if not most. So with the upcoming Balance Awareness Week quickly approaching (September 12-18), it only makes sense for me to try (AGAIN!) working on my own balance. So, I’m putting on ‘my big girl panties’ and have Mike drive to the Park next door to my old workplace and go play on the equipment! Maybe…if I’m lucky, there might be another child to play with…

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