My teacher, Vertigo.

Vertigo is the worst teacher. I don’t like it at all. Strike that. I’ll go as far as to say, I hate it.

Vertigo’s lesson plans are at best chaotic, sometimes even non existent. The pop quizzes are random and frequent. The tests are quite difficult and challenging. But here’s the real kicker, the big exam is given when you haven’t even had a chance to look at the course material. I mean, what kind of teacher gives you the exam when they’ve never even taught you the lesson? An extremely cruel,  harsh teacher if you ask me.

And yet in the same breath, I can honestly say that some of the most meaningful and memorable life lessons have been taught by Vertigo. And perhaps these lessons could not have been learned any other way.

 I despise Vertigo and its teaching style. But I suppose you don’t have to like the teacher to value the lesson do you?

What lessons have you learned through your Vestibular Disorder?

How I won the Vestibular Disorders Lottery. Twice!

I don't consider myself to be a lucky person. I've never really won anything significant in my life.
Although once, when I was 9 years old, I had a winning raffle ticket at an event I attended with my family. My prize was a small bottle of whiskey. My mom told me I could drink it in another 9 years time once I reached the legal drinking age of 18. I never drank it. The whiskey still sits unopened in my mothers cocktail cabinet. She wrote my name and the winning number on the back of the box.

I've often wondered what it would be like to be the winner of something big and life changing - like the lottery. It would be quite something to be a grand prize winner. Especially if it was a rollover lottery. Or how about the Publishers Clearing House Sweepstakes, where you can receive a large weekly cash prize for the rest of your life? And since longevity runs in my family, for me, that could potentially be a long time. I think that would be pretty awesome. Awesome, but also unlikely, since I never play the lottery.


How is it then, that someone like me who never wins anything could be (un)lucky enough to win the
Vestibular Disorders Lottery? A Chronic Illness Sweepstakes that I didn't even enter? Oh and not only did I win, I was one of the grand prize winners too. One who will receive weekly random payouts of headaches, nausea, brain fog, unsteadiness and dizziness. For the - Rest. Of. My. Life.
I  must admit that I asked myself that question again. Why? And the answer came back almost immediately. Just like any other lottery win - it's arbitrary. Totally random.


 It was with my conditon in mind, that I decided to enter a Facebook contest through one of the fan groups that I belong to.

I like a company called Mantraband. They make jewelry and bracelets with inspirational or motivational messages and quotes engraved on them. I presently own three silver ones.

I've had to retire this one, since I can no longer run.

These mantras inspire me daily.

 For this contest you had to choose three mantras to be worn at the same time and say why you would wear them together. Most of the other contest entrants chose positive and inspirational mantras for use in everyday life. I took a somewhat different approach. I thought about what I would want to say to myself on my toughest dizziness day. What words would help me through a bad vertigo day and the days of recovery that followed. I decided to go with these three mantras:

1. Breathe
2. You Got This
3. One Day At A Time.

And I threw my entry into the random draw with all the others.

So, imagine my surprise when this appeared in my Facebook messenger inbox. I won. My vestibular disorder inspired entry, made me a winner.


This has made me want to pick up my shield and keep fighting whatever this illness throws at me. I've been a little discouraged recently. So, to all the other vestibular warriors out there, whatever you may be facing today, remember this... Breathe, You Got This, One Day At A Time. #Winners.

Now, in the light of my recent win, what are the odds of winning this car in the competition I entered at the Canadian Auto Show last weekend? Stay tuned.

You can follow my Facebook page, The Dizziness Diaries, here.

Vertigo

VERTIGO

It happened suddenly one night, I simply went to bed.

And woke to find that someone shook a snow-globe in my head.

My world just started spinning but I knew not what to blame.

Now nothing in my life will ever, ever be the same.

At first I thought - a virus? This dizziness will pass away.

But moments turned to hours, then the hours turned to days.

The days have turned to weeks, and the weeks to months and more.

No longer can I do the things I once enjoyed before.

I trip, I fall, I stumble while I rock and bob and sway.

From all I've read it seems I may forever be this way.

I'm trapped upon this not so very merry 'verti-go-round'

Just wishing I could once again stand still on solid ground.

I shake my fist at God and question Him about this curse.

And why instead of better, every day I'm feeling worse?

I wonder what will quell the rocking waters in my head.

That leave me dreading every moment I spend out of bed.

I'm a captive of this snow-globe, silent prisoner from within.

So fearful every movement may descend into a spin. 

I smile and say I'm coping with my daily dizzy ride

But truth be told, behind my smile, I'm dying deep inside.

A Forced Pause.

 I've struggled to find an accurate term to describe this current stage of my life with chronic illness due to Vestibular Neuritis. At first I called it my 'Healthy Life Hiatus'. Then I started to refer to it as my 'Sudden and Unexpected Early Retirement'. While both of these are fairly good descriptions, I recently read a book by Christy Burns and the title of the book seemed to fit my status completely. It's called 'A Forced Pause'.

When I first became ill, it felt like the universe had somehow pressed a pause button and my life was put on hold. All I wanted to do was get better and press the play button so that life could resume again and I would just pick up where I left off. I spent a lot of time grieving my old life and everything that I'd lost, which I suppose is natural and even necessary. But I also spent way too much time worrying about the future and the long term prognosis of my condition. All that the rewinding and fast forwarding did, was stop me from focusing on the present moment. I now realize that there
is so much I can actively do, right now, in this slow season of rehabilitation, readjustment and recovery.

 Joining some of the vestibular support groups on Facebook has helped relieve some of the lonlieness and isolation I felt with this condition. I personally didn't know anyone with chronic dizziness and my doctors didn't seem to know what support I would need after my diagnosis. In fact doctors have been quite dismissive with a 'go home and be dizzy' attitude. My family, on the other hand, have been wonderful, as have some of my friends, but getting to know people who have to with live my symptoms on a daily basis  has been the real game changer. This led to finding out about VeDA, the organization for Vestibular Disorders. They provide lots of support, information, articles and resources. This has been instrumental in moving forward.

I had to do a hard reset. Learn what my new limitations are and find new strengths, hobbies and  interests. Set some new goals and dream new dreams. Stay positive, remain active and make self care a priority. Some days I achieve everything I set out to do. Other days I can barely get out of my pajamas, but that's what happens when you're in a forced pause, recovery is not always linear. Sometimes it's two steps forward, one step back. Stop and restart. Relapses and setbacks. And all of it is okay.

While I can't control this pause, I can certainly control how I respond to it. In the beginning I was very depressed and I distinctly remember having a phone conversation with my sister who was trying so hard to cheer me up and brighten my day. But I was wanted none of it. I was having a pity party and she wasn't invited. When we finished our conversation, I was actually smiling and laughing at some of the things she said. I realized you can smile with chronic illness and even laugh. I still acknowledge my pain, but have given myself permission to enjoy living again.  Now, I can't change the misery of the dizzy days and I still have them, but I can certainly change how I react to them.

I'm so inspired by some of the stories shared by people within my support groups. They have helped me to see that I can not only survive, but also thrive with this condition. It's true that chronic illness has changed me. But some of the changes are definitely for the better. I'm actually growing as a result of this. It is my hope that my blog is a reflection of this new growth.

And there are some days that all of this just becomes a bit unbearable. The days when the dizziness is relentless and you just want to give up. Tha'ts where my faith in God comes in. On the really tough days, my faith is all I have to lean on.

(Psalm 46:10 "Be still (pause) and know that I am God". Psalm 62:5 "My soul, wait silently (pause) for God alone. For my expectation is from Him".)

So even though my life has been turned upside down, I have to trust that somehow it will all be okay. Even during this season of slow that I call 'A Forced Pause".

You can follow The Dizziness Diaries on Facebook, here.

Going into Space

On February 1st, 2020, my husband and I flew to Orlando, Florida for a getaway.

Best.Vacation. Ever.

Okay, so what was so special about this vacation that led me to make the above statement?

Well... it was our first vacation in 32 years of marriage without our children.

February in Ontario, Canada is bitterly cold. Orlando was sunny and warm.

I didn't have to cook, clean or do laundry.
It was sunny and warm...

I didn't have to shovel snow.
It was sunny and warm...

I didn't have to drive my children anywhere. Or pick them up. Or pick up after them.
It was sunny and warm... (you get the idea!)

But most importantly for me, neither the flight there or back, caused any vestibular issues. 

And the minimal dizziness I experienced that week, did not impact our vacation whatsoever. Hooray!

We didn't choose Orlando as a destination because we wanted to experience the magic of Disney. No, we went there because my husband's friend has a home in Davenport and we were fortunate enough that he let us stay there for the week.

We enjoyed all the typical vacation activities in Orlando. Long walks, bicycle rides, visiting beautiful gardens, museums, a day at Clearwater Beach and my personal favourite - mini golf. But the absolute highlight of the trip was when we visited The Kennedy Space Center. I was beyond excited about this.

I couldn't believe that we were here. At NASA. Standing in the shadow of some of the brightest, best and most brilliant minds on the face of the earth.

NASA, where President Kennedy in 1962, boldly stated that they would put a man on the moon by the end of the decade, but never lived to see it.

I visited the rocket garden.

 Took the bus tour to the historic launch sites.

Stood in awe viewing the actual Space Shuttle, Atlantis.

 Visited the memorial of the lost orbiters Challenger and Columbia and paid a solemn tribute to the 14 brave astronauts who died during their missions.

I sat at the controls and pretended to take off in a  space shuttle.

 I discovered how astronauts use the washroom. I even tried Freeze Dried Space Food.

 And this is the one time that I actually preferred an apple over an ice cream sandwich!

I did however, decide to take a pass on the virtual Space Shuttle Experience. Why on earth would I  line up for 20 minutes to experience what it feels like for an astronaut to be launched into space? Firstly, it could potentially trigger vestibular issues for me. Secondly, I get to have that 'experience' at random every time my body chooses to have a vertigo attack. That's not virtual, that's my reality.

It was here, while I waited for my husband to finish his ride, that I looked around me and wondered how many other people are here today walking around dizzy? How many are too dizzy to enjoy this particular exhibit? Any of the exhibits? How many people, like me, are suffering in silence?

According to the Vestibular Disorders Association (VeDA) as many as 35% of adults aged 40 years or over in the United States have experienced some form of vestibular dysfunction. That's approximately 69 million Americans.

 I literally stared into space and wondered..."How is it that they can they can put a man on the moon, yet cannot fix the plight millions of people on this planet who suffer with chronic dizziness and balance disorders on a daily basis.

How is it that astronauts have orbited the earth, built an International Space Station and launched thousands of satellites from rockets and space shuttles, so that down here on earth, when I'm driving in my car and make a wrong turn, if I have the GPS enabled, a signal is sent and I'm redirected and rerouted within seconds....from SPACE!

How is it with all the advances in science and technology that no one has researched and developed a way to permanently put the inner ear crystals back into place once they've become dislodged so that people with Benign Paroxysmal Positional Vertigo, (BPPV,) don't keep having recurrences even after treatment? How is it that they haven't found an effective treatment for people. like me, with Vestibular Neuritis, so that we are not still living with the debilitating effects of the virus two years or even longer after the virus has left? How is it that they haven't discovered a cure for Meniere's Disease that can cause violent episodes of vertigo and can often lead to hearing loss? Or Tinnitus? Or Vestibular Migranes?

I don't actually know the answer to these questions, but if I were to take a guess, I would say it's because of visibility. Or invisibility to be more accurate. People who have these conditions look normal from the outside. Our disability is hidden. It's invisible.

Visibility changes things. Visibility changes behaviour. Visibility causes action.

It is only because of visibility that a pregnant woman in her third trimester, will be offered a seat on public transit. That is definitely not the case when she's in her first trimester. She may be feeling just as tired, weak or nauseous due to all the hormonal changes, but no one can see that in the early stages of pregnancy.

So what can we do to make an our invisible disability more visible? Well, we can launch awareness of vestibular disorders into space. Cyberspace, that is!

With the many forms of social media out there, the influencers, the blogs and public platforms, we can bring awareness to the people and organizations who have the power and ability to bring about change.


What can you do? You can visit VeDA and learn more about vesitbular disorders and all the work that they do within the association here. and if you are financially able, leave them a donation here.


You can share this post. Sharing information is powerful. There was a very successful Faberge shampoo ad campaign in the 1980's where actress Heather Locklear stated "if you tell two friends, they'll tell two friends and so on..." Sharing will help to spread the message.

You can like and follow my new Facebook Page The Dizziness Diaries. Most of the Vestibular Groups that I belong to on Facebook are private (as they should be) because the people in these groups often share painful, sensitive and private information. The wider public audience will never see the truly awful side of our condition. However, my Facebook Page will be open for anyone to read posts from this blog and gain a little understanding about ordinary people living with vertigo.

Also it would be great if you left a thumbs up or a comment, so I know that my stories are resonating
with you.

Finally, my only aim with this blog is to try and highlight vestibular disorders and show how devastating and life altering they can be. If we can shine a spotlight on these disorders which affect millions of people everyday, perhaps then and only then will our invisable disability become visible. So visible in fact, that it will be clearly seen. Even from space.

Perspective

Have you ever noticed that by simply taking the time to view a situation a little differently it can dramatically change the way you see it? I have found this to be so true. Especially quite recently with my diagnosis of Vestibular Neuritis and the way that I’m now learning to live my life with 

this condition and the daily dizziness it brings. 

One of the reasons for this paradigm shift and new found perspective is from reading a book 

by Max Lucado. 

I love Max Lucado. He is my all-time favourite author.I've read practically everything he's ever written and often joke with my friends that if he ever published his grocery shopping list, I
 would probably buy that too AND all the groceries he buys, in the hope that some of his insight
and creativity may rub off on me by way of osmosis. Seriously.

And look, the whole top shelf of my bookcase is devoted to his writing.

Can you tell I'm a fan?

So after a long and very difficult struggle with depression, I once again turned to Max for some hope and much needed perspective. I found it in one of his older books

 entitled 'Every Day Deserves A Chance'.

In it he encourages readers to try and see their circumstances from a different perspective.

Chapter 3 "Gratitude for Ungrateful Days" moved me. Hard.

It's not that I was ungrateful, but the misery of my condition blotted out the fact that although I was suffering, there was still a lot I had to be grateful for.

The following is an excerpt from that chapter, where he compares the attitude of

a dog and a cat. Same house. Same circumstances. Same owner.

Yet completely different attitudes.

Excerpts from the diary of a dog:

8:00 a.m. Oh boy, dog food - my favourite.

9:30 a.m. Oh boy, a car ride - my favourite.

9:40 a.m. Oh boy, a walk - my favourite.

10:30 a.m. Oh boy, another car ride - my favourite.

11:30 a.m. Oh boy, more dog food - my favourite.

12:00 p.m. Oh boy, the kids - my favourite.

1:00 p.m. Oh boy, the yard - my favourite.

4:00 p.m. Oh boy, the kids again - my favourite.

5:00 p.m. Oh boy, dog food again - my favourite.

5:30 pm. Oh boy, Mom - my favourite.

6:00 p.m. Oh boy, playing ball - my favourite.

8:30 pm. Oh boy, sleeping in my master's bed - my favourite.

Excerpts from the diary of a cat:

Day 283 of my captivity. My captors continue to taunt me with bizarre little dangling objects. They

dine lavishly on fresh meat while I'm forced to eat dry cereal. I'm sustained by the hope of escape and the mild satisfaction I derive from ruining a few pieces of  furniture. Tomorrow I may eat another houseplant. I attempted to kill my captors this morning by weaving through their walking feet. Nearly succeeded. Must try this strategy at the top of the stairs. Seeking to disgust and repulse these vile oppressors, I once again induced myself to vomit on their favourite chair. Must try this on their bed.

To display my diabolical disposition, I decapitated a mouse and deposited the headless body on the kitchen floor. They only cooed and condescended, patting my head and calling me a  "strong little kitty." Hmmm - not working according to plan.

During a gathering of their accomplices, they placed me in solitary confinement. I overheard that my confinement was due to the power of allergies. Must learn what that means and use it to my advantage.

I am convinced the other household captives are flunkies, perhaps snitches. The dog is routinely released and seems naively happy to return. He is, no doubt, a half wit. Must be an informant. I am certain he reports my every move. Due to his current placement in the metal cage, his safety is assured, but I can wait. It is only a matter of time.

Max, then goes on to ask the question "Which diary reads more like yours?

'

Now, please don't misunderstand, I do not expect that anyone suffering with a vestibular disorder or any other chronic illness should ever say:

Oh boy, nausea - my favourite.

Oh boy, dizziness - my favourite.

Oh boy, vertigo - my favourtie.

God forbid, no. NO!

And if you were a fly on the wall to witness me going through an attack of vertigo, you would have to censor what came out of my mouth. But here's what I am saying. I think it is possible to reframe the way we think about our suffering. Yes, it is miserable what has happened to us and some may even think unfair, but the 'cat' mentality will only serve to enhance the pain and prolong the misery.

In recent weeks I've tried saying to myself...my body is trying to regulate itself; I will not be spinning forever; I will not die from this and (yes, it's a cliche, and used so often it can sound trite, but); this too shall pass...

I think it's helping.

All I needed was a change of perspective.

What has helped you change the way you look at your condition?