How We Label Ourselves…

Oh, my! I purged myself with the ‘telling’ of our daughter’s accident, but it was cathartic in many ways. I realize now, many people wouldn’t or couldn’t have done so much of what I chose to do. It’s in my DNA to be a caregiver. At this point of my life, it seems a ridiculous ‘label’ to describe myself…as now I live more as a ‘patient‘, a ‘survivor‘, a ‘victim‘. This is something that I am ‘working’ on every day now. Yes, still working on it after all these years. I feel I should learn something new every day, and I guess I do, but…it’s not the same as when I was able to work. Oh, yeah, my job…my career…my livelihood…

My position had been held (I did first a Medical Leave, then a Family Leave), but when I returned close to a year later, I was needed in the school system. My heart sank! That meant I’d have to drive from school to school, in and out of the car lugging my OT ‘bag of magic’, going from class to class. I thought I was better. I thought I could drive. It was a rude awakening! Of course, I had dizziness and was back to wall walking. I’d shared my situation with some Principals and Teachers, but not everyone. I know some thought I might be drinking! After a number of scary situations for myself with the children, I knew it was over, but I remained in denial. When ‘push came to shove’ with my work, I realized I had to give up a career and dream job. Oh, how I mourned…I have been married for 42 years in June, to the love of my life, so I don’t know what divorce feels like, but it felt like that, a bad divorce. My heart was ripped out in making that decision…for a very, very long time. I purchased a ‘Memorial Brick’ and had it engraved, “Margaret Byrne Loves MCRC Children”. They placed it right next to the O.T. Therapy Room, to pay homage to my 12 years of working there.

I kept up with required Continuing Education, still holding tight to the wish to, one day, go back. I took almost 30 hours in Vestibular Rehabilitation Continuing Education. I was going to ‘heal’ myself. It didn’t work, but, I have in the meantime, become a very knowledgeable person in the Vestibular System, the Psychology of a person with Chronic Invisible Illnesses (because I AM one!), and various treatments used in VRT. All the while, becoming more and more of a recluse, which as I learned, is not at all unusual for ‘us’.  Just last month, I decided to let my Certification for C.O.T.A. ‘go’ and can now say, with pride, I am a C.O.T.A./Retired in Good Standing! Now, to let go of my O.T.A. license…

For the sake of continued readership, and my sanity, I am fast forwarding to present day… yeah! I plan to begin sharing some of my ‘vast’ knowledge of our Vestibular System, Proprioceptive System, Coping Techniques, and various VRT exercises in this blog. Making it more education, and less ‘in your face’ with my story. Even after all these years since diagnosis (2003), I still chose to hold onto hope. It will continue to be a cathartic process, but now, I feel a sense of ‘community’ that will be with me during this time (thank you VEDA and FB Support Groups!). I just had to get through ‘that’ part of my life, the part of why I never completed my VTR. As I reread my blog, it sounds more like excuses than reasons. Regardless, here I go again with VRT….I got pretty dark there, for a while. I know….

It feels so ironic that I was ever one of those kids who loved spinning, twirling, somersaulting, and cartwheeling their childhood’s away. Now, it’s difficult to quickly turn my head without becoming dizzy. I’d never go on a spinning ride now. I don’t know any ‘ride’ I go on now! I miss out on my grandsons’ playing sports because their movements are so fast and it’s usually sunny…this is one quirky Disorder, huh?  I’ve become almost totally dependent on my husband. He’s really an amazing man. He works full time, does ALL the shopping, does his own laundry, cooks for us…silly as it seems, I love to do laundry! It’s one of the few things I can still do, I just had to use my O.T. brain and modify the task. I took out the twisting component of my doing laundry. Before dizziness, I’d do a lot of turning back and forth movements in the sorting and loading of the laundry. Now, I either sort with my feet (I hear you laughing!), or bent over from the waist and bracing my forearm on my knee, then sort and load (I do have front loaders, thankfully). Little to no twisting equals less dizziness. Does that make sense?

I also set up my home to promote safety, such as the way my furniture is arranged. Plenty of places to plop down should I become dizzy. I use a shower chair as closing my eyes still causes dizziness. All in all, I live a rather sedentary lifestyle due to my fear of falling again. A side effect of doing this is, I now have full blown Osteoporosis. The lack of weight bearing and a low Vitamin D level caused me to lose 12% of bone mass in about 6 years. This was totally avoidable, had I forced myself through the fear, through the dizziness, through whatever was going on in my life, I wouldn’t have one more health issue. There are a lot of regrets, but if I continue down the path I am on, I’ll just crumble into a bag of bones…

So, I’m taking back my life damn it! But where has my self-motivation gone? Blown away by the winds of West Texas…This one arid, harsh, hot, barren area. No trees, just Mesquite bushes! It’s flat, flat, flat! You can see 20+ miles to the next town. I’ve lived here 50 years now and hated it my whole life. Heat is something I’ve never been able to handle, never. I ‘ruined’ many vacations due to Heat Exhaustion, according to my siblings and children. I wilt and faint in less than 10 minutes on a 100+-degree day, which are fairly common 3-4 months of the year. On the other hand, if a ‘Blue Northern’ blows in, the temperature can drop 40 degrees in a matter of minutes…So,my ability to just ‘take a walk around the block’ would be very limited. An indoor treadmill is my only option and I should be on it right now, but instead I sit here blogging…Am I full of excuses or what? Swimming was always my ‘go to’ exercise but with the head turning and flips used in lap swimming, dizziness was a given.

Something that is clear, I have to push my limits again. I have to get out with my husband, and at least push the basket at the grocery store, at the very least. I have discovered, sadly, “If you don’t use it , you’ll lose it” is a very true statement. It applies to our brains and our bodies. As today, I will track how many times I follow through with my own dare. I will work on my scanning side to side and up and down, stare at a red felt ‘X’ on black and white checkerboard fabric…where I began in 2005…Anyone care to join me in reclaiming health and abilities? I’d love for you to dare yourself to accomplish something with me! I believe it’s never too late. I believe in Miracles. I believe in myself…

https://vestibular.org/

 

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17 thoughts on “How We Label Ourselves…

  1. I can relate to year symptoms. I am in Minnesota and can’t deal with temps that I once was able to. Now I sit in my air condition running house even when it’s cool outside. I find it keeps me from getting real dizzy. I dread taking a shower even, as you need to close your eyes I have to brace myself against the wall. I am a single adult who had to retire early from work as a otr truck driver. Now there are some days I can tolerate short driving no more than an hour at one time. So I’m trying to figure out What I can do to get back into working field. Doctors keep saying I need to exercise more. I wish I could. Farthest I’m able to walk has been 6 blocks and I just can’t get the will power to do that. I have cardiac disease and was just diagnosed diabetic which I’m still fighting to get my plasma down in safe area. Walking would help if I could. I’ve accepted that I’m disabled just not sure I want too.

    Liked by 1 person

    1. Thanks for your comment Mike. I am just writing about the heat here in Texas, 107 degrees, and my life long inability to handle heat. I am much more sensitive to LIFE since being hit with this. Showers were a dangerous thing prior to putting a shower chair in mine! Exercise is very challenging for me also, but since my recent diagnosis of Osteoporosis it’s something I have to figure out! Hang in there! ๐Ÿ˜Š

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  2. Hi very inspiring. I have had this for 4 months now . Very life changing as I worked as a OT assistant . I am currently of sick and looking at early retirement. I am having Vrt Black X and shaking of head . Not sure it is doing me any good but trying . Also accupuncture and meditation. I have not given up yet but realise how life changing this is and living alone it makes it worse. Never give up and trying to stay positive. … Andy

    Liked by 1 person

    1. Hi Andy and thanks for commenting! So you were a fellow COTA/LOTA ๐Ÿ˜Š! HAVING to leave a career is way different than CHOOSING to leave. I still miss it terribly, but becoming a VEDA Ambassador and blogging is filling the void. Oh! The black and white checkerboard print with an X…the worst! Gotta get more creative for Vestibular Therapy, don’t you think? ๐Ÿค”

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  3. Margaret – “found you” from a posting in David M’s VEDA FB group. I could relate to everything you shared and I have been dizzy since 1983 and was teaching full time (and continued for 9 years) but then took an early-ish retirement hoping I could continue in small ways by volunteering. Not so. However, we do find new ways to serve and be – focus not on the losses but what can nurture.

    I did not see a way to sign up for your future blog posts but will try to remember to check back in !! It is a plus to find someone who speaks the same language!

    Lynn

    Liked by 1 person

    1. Thank you Lynn and I’m glad you found me! I need to get back on my site to see my layout (I recently changed it) to see just where I put it-lol! I find almost every day something reminds me of ‘the good ole days’, but I know I made the right choice. A very hard one, but a needed one. Thanks again ๐Ÿ˜Š

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    2. Hi! Lynn, I’ve added a Follow button (duh). It’s in the Widget in the top right corner. Thanks for pointing that out! When I began this, a year ago next month, it was almost like my diary or journal. I never thought people would actually READ it-lol! VEDA and all my new dizzy friends have been a Godsend for me, truly. Thanks again!

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  4. Hi there, I’m also a PT, have had Mรฉniรจre’s disease for 19 years and am newly diagnosed with migraines. I’ve been “lucky” so far in that I’ve changed practice settings to allow for a less physically demanding day and have recently reduced my FTE. I am a vestibular therapist now starting my own vestibular therapy. ๐Ÿ˜„๐Ÿ˜ณ

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    1. Shoot I hit the button to like my own comment! I meant to continue to say: I’ve been worried about getting to that point of not being able to treat people safely. I so hear what you are going through and hope you can find peace with whatever path you find that works for you.
      Best wishes,
      Christina

      Liked by 1 person

    2. Hi Christina! Thanks so much, but yeah you get it. Had I been an OT vs COTA, I could have switched to doing evaluations. As a COTA, all hands on, which was one of the reasons I chose that. I didn’t want to be stuck doing just evals…oh well…we do SI treatment which addresses the Vestibular System and I always felt for my little clients, wondering what it must feel like…now I know, boy! I know ๐Ÿ˜Š

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    3. Its ironic, right? Although I think as PTs we’re in a great position to understand this stuff for ourselves and others. Prior to my experience I worked with many children with the opposite problem in a way, an underactive vestibular system and these kids couldn’t get dizzy (common for kids on the autism spectrum). Since learning so much about the vestibular system and visual-vestibular connections I have worked with both kids with vestibular disorders, as well as incorporated it into treatment for all different developemental disorders. Its such fascinating stuff. I just wish I could fix myself! I’m doing an experimental treatment next month and praying that will make all the difference.

      Liked by 2 people

      1. Hey, Joni! They facility I worked for 12 years, had a Sensory Room…all the therapists got to add our 2 cents…it was all padded (good for me), a zip line that ended in a foam pit, an in-floor trampoline, climbing wall, ceiling hooks for the various swings (platform, spandex, etc.), scooter boards…I could go on and on and on. We had it all! I did try some ‘self-therapy’ myself, but I found the only swinging or rotation mvmt. I could tolerate was in a spandex swing. It gives the extra feedback (pressure) like a big hug, but I still needed my feet to be planted (more feedback)…I may be 60-years old, but in my head…still a child, wanting the freedom to be gravity free, all be it only momentary…Please keep me up how it works for you! ๐Ÿ˜‰

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      2. I wouldn’t dare go on any of the sensory swings! I have gone on bolster swings and platform swings where I’m only going in a linear direction and have my feet on the ground, but no rotation for me. I have cut back and gone up with hours over the years. I have learned that I can safely treat, but am very cautious with certain things, like if I’m on the stairs I always have my hand on the rail.

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    1. Hi there Joni! Thanks for your comment. Are you still able to work? I have been through a lot in my life, but this is the most frustrating thing ever! Well, next to our daughter’s accident…I just let my Certification go ๐Ÿ˜ถ, I keep up with my CEU’s, but I SO miss the children! My grandsons are here for a month…really getting a testing of what I can and can’t do…thank you so much again!

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      1. I am still working but it has been a battle lately. I’ve always been distracted by the kids so I would feel better while treating. Lately my symptoms are worse and even the kiddos aren’t giving me that mental break of dealing with it all. Enjoy your visit with your grandsons!!!

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