Day Three - Technology

 On the third day of gratitude, I am grateful for technology.

I was born in 1966, but thank goodness I didn't have to live with this disorder in 1966. Or 1980. Or even 1990 for that matter. 

Can you imagine having to live with a vestibular disorder :-

without Google?

without VeDA?

without smartphones?

without health apps?

without YouTube?

without podcasts?

without online medical journals?

without alternative medication?

without virtual vestibular therapy?

without social media?

without online support groups?

without GPS - to make driving less stressful?

Can you imagine how hard that would be? Nor can I. Nor would I want to.

Technology has made this great big world a little bit smaller. Technolgy has brought us closer together, so that we don't have to feel so isolated and alone in this.

Living with a vestibular disorder is hard. But having technology makes the hard a little bit easier.

And I am abundantly grateful.

Day Two - Music

 12 DAYS OF GRATITUDE

On this second day of gratitude, I’m grateful for music.

I think ABBA said it best....

“Thank you for the music, the songs I’m singing.

Thanks for all the joy they're bringing.

Who can live without it, I ask in all honesty?

What would life be? 

Without a song, or a dance what are we? 

So I sing, thank you for the music - for giving it to me...”

I’ve always loved music, but I think truly appreciate it a little more since having this disorder. 

Music has the ability to uplift me when I’m feeling down, and classical music can certainly help me to calm down when I'm stressed and anxious. 

Music can both energize me and get me up off the couch, or help me relax and drift off to sleep. 

And music, quite often a hymn, has got me through some of my toughest days, when I didn’t even want my family around.

 

I can be transported to another time or place, by listening to the music I enjoyed in my childhood, or I can try stay current and listen to what my sons are listening to (actually I'd rather not)!

So whether I’m trying to do the high soprano parts in Handel’s Messiah, or pretending to be the sixth Spice Girl (Old Spice?) I'm truly grateful to have music.

And now, thanks to Spotify and Google Assistant...I can have access to music just by the sound of my voice.

Hey Google...Christmas playlist!

Do you have a song that has helped you on your bad days?

Day One - Creativity

On this first day of gratitude, I am grateful for creativity.

For the ability to use my imagination, ideas and thoughts and turn them into something unique and original.

To create with words. To weave and fashion them into something tangible. Something meaningful. Something inspirational. 

 Poetry.

It has been this form of self expression that has most helped shape my thinking. It's helped me to adapt to life with a chronic illness and somehow come to terms with it. Writing has helped to heal my emotions and has given me a purpose. It has been a welcome distraction on some of my bad days.

Writing has also given me confidence. So much so, that one day I decided to start a blog and share my poetry publically.

Now, some of my writing has echoed faintly in the healing journey of other people like me. It has made an impact in the life of someone else. That is profound to me.

Creativity has allowed me to turn my pain into something positive. And for that, I am abundantly grateful.

My first poem.

A backwards poem - reflecting 2 sides of my journey.

I would love to hear what you are grateful for in your chronic illness journey. Come back tomorrow for Day 2.

The 12 Days Of Balance

12 Days without vestibular symptoms. What would that look like?

Ask anyone with a vestibular disorder what they would most want for Christmas, and I'm quite sure the answer would be a resounding - 'RECOVERY'!!!

Oh, just to be symptom free for a few days would be the best possible gift.

Sadly for many of us full recovery isn't a possibility. But we can at least hope for some of the debilitating symptoms to ease for a while, so that we can enjoy the holiday season with our families.

I took tune of the Christmas song "The 12 Days Of Christmas" and, using some of the most common symptoms with this disorder, I made a vestibular version. 

Maybe you have these symptoms, or maybe some of yours are different, but you get the idea.

 Sing along with me...

  

*short version - there are a lot of verses*

THE 12 DAYS OF BALANCE

(The 12 Days Of Christmas - Vestibular Version)

On the 1st day of balance, recovery gave to me:-

A day fully symptom free.

On the 2nd day of balance,recovery gave to me:-

Two steady legs, and 

A day fully symptom free. 

On the 3rd day of balance recovery gave to me:-

Less brain fog,

Two steady legs, and

A day fully symptom free.

On the 4th day of balance recovery gave to me:-

More energy, 

Less brain fog,

Two steady legs, and 

A day fully symptom free.

On the 5th day of balance, recovery gave to me:-

NO MORE SPINS...

More energy, 

Less brain fog,

Two steady legs, and

A day fully symptom free.

On the 6th day of balance recovery gave to me:-

Zero drunken swaying,

NO MORE SPINS...

More energy, 

Less brain fog,

Two steady legs, and 

A day fully symptom free. 

On the 7th Day of balance,recovery gave to me:-

Floaty feeling finished, 

Zero drunken swaying, 

NO MORE SPINS

More energy, 

Less brain fog,

Two steady legs, and 

A day fully symptom free. 

On the 8th day of balance, recovery gave to me:-

Non existent nausea, 

Floaty feeling finished, 

Zero drunken swaying, 

NO MORE SPINS...

More energy,

Less brain fog,

Two steady legs, and 

A day fully symptom free. 

On the 9th day of balance,recovery gave to me:-

No ‘ice-pick’ migraines, 

Non existent nausea, 

Floaty feeling finished,

Zero drunken swaying,

NO MORE SPINS...

More energy, 

Less brain fog, 

Two steady legs, and 

A day fully symptom free. 

On the 10th day of balance, recovery gave to me:-

Never needing Epley, 

No ‘ice-pick’ migraines, 

Non existent nausea.

Floaty feeling finished,

Zero drunken swaying,

NO MORE SPINS...

More energy, 

Less brain fog, 

Two steady legs, and 

A day fully symptom free. 

On the 11th day of balance, recovery gave to me:-

Dizziness departing

Never needing Epley 

No ‘ice-pick’ migraines,

Non existent nausea,

Floaty feeling finished,

Zero drunken swaying,

NO MORE SPINS...

More energy, 

Less brain fog, 

Two steady legs, and 

A day fully symptom free. 

On the 12th day of balance, recovery gave to me:-

No tinnitus humming,

Dizziness departing,

Never needing Epley,

No ‘ice-pick’ migraines,

Non existent nausea,

Floaty feeling finished,

Zero drunken swaying,

NO MORE SPINS...

More energy, 

Less brain fog, 

Two steady legs, and 

A day fully symptom free

Wishing you all a symptom free (or at least freedom from some of your symptoms) holiday season.

You can read more of my poetry and inspirational writing on my Facebook page The Dizziness Diaries

 For more information on vestibular disorders please go to VeDA

 

Running On Empty

 I'm tired. Really tired.

Actually not just tired - more like exhausted.

No, strike that. I'm drained.

Seriously drained.

These days I seem to drain faster than a collander drains vegetables. Faster than my sons university fees drain my bank account. Faster than the battery in my (now ancient) iPhone 8.

Now you're probably thinking that I'm one of those low energy/low motivation, sedentary type of people, but that couldn't be further from the truth. 

Fit in my 50's

This was me - quite recently too. This picture was taken in the fall of 2017.

At age 51, I was the fittest I'd ever been in my entire life. I had a successful running season and had just run my fastest marathon. I used to wake up at 4 o'clock (the early one) and run 6 miles before going to the gym. Then I would go to the gym and work out for an hour and a half before going to work. Then I would go to my full time job in a Kindergarten classroom and work with 30 children, under the age of five. I'll say that again slowly - Thirty. Children. U.N.D.E.R. Five. Years. Of. Age.  

After work on some evenings, I would go for a second run, if it was peak week of marathon training. Other evenings I would go to a  Zumba class. Energy? I had it, and lots to spare. I even made the Energizer Bunny look like a sloth.

But that was then. 

Then came a back injury, followed six months later by a vestibular disorder.

Today, I hardly recognize the woman in the picture above. And I certainly don't remember ever feeling like I did then. I just don't remember what it feels like to have a fully charged battery anymore. I wake up at about 50% and then use the remainder by about lunchtime.

This has perhaps been the hardest thing to come to terms with. The constant fatigue and lack of energy. I seem to go to bed tired and wake up just as tired, if not more so. And it's not due to a poor diet or lack of supplements either. I even tried a Red Bull the other day, and all that did was make me more dizzy. I think  the real truth is - I'm sick and tired of being sick and tired. Chronic illness is exhausting. I don't think it's just a physical thing, this condition is emotionally draining. The symptoms are tiring, but it's equally tiring knowing that I won't ever get better.

 So I've just renewed my gym membership in the hopes that the physical activity will be energizing in some way.

Now please don't think that I'm being a Debbie Downer. That's not me. Quite the contrary. I'm normally a pretty positive person by nature. I can spread positivity around like a five year old spreads glitter on a homemade Christmas card. Except my glue stick has dried up and I'm all out of glitter! So there you go. Today tiredness wins.

However, as tired as I may feel, I do like to end each post on a positive note, so perhaps I'll just leave it at this...

I'll try again tomorrow.

I 'Just Do It' Dizzy

The other day I saw this Nike swoosh symbol made out of Lego. Well Nike - I hope you don't mind, but I've kinda adopted it as my own. This swoosh looks like it's dizzy!

Deep down, I've probably always been a Nike girl at heart. It's not that I particularly susbscribe to big brand loyalty. It's not that I was even sold on their overpriced merchandise. What got me, were the three little words in their slogan. Those three words completely changed me. 

"Just Do It" not only had a profound effect on me, but it also revolutionalized a generation. It made average people try to be a little above average and it made ordinary people believe they could do extraordinary things.

It was partly this slogan, that got a couch potato like me, up and off my couch to start running on the day of my 40th birthday. It was partly this slogan that was behind my decision to run the Nike Women's Marathon, years later in San Francisco. And if you don't believe that this is a big deal, just think about how many hills there are in San Francisco!

Nike Women's Marathon with friends.

A shorter, less hilly race.

And it was partly this slogan that helped me overcome my fear of heights and attempt tree top trekking with my family.

"Just Do It" Scared!!!

"Just Do It" is a great slogan...until of course - you can't!

What happens when you can no longer "Just Do It"? What happens when an accident, an injury, or an illness prevents you from doing what you want to do? What then?

Well, that's when you have to make some changes and modifications. That's when you have to adapt the slogan to fit your particular situation. That's when you learn that you can still do some of the things you used to enjoy, just differently.  That's when - You 'Just Do It' Dizzy!

When I was first hit with Vestibular Neuritis, I avoided anything and everything that made me dizzy. For the first few months I literally curled up into a ball, stopped moving and stopped living. I didn't do anything and I didn't go anywhere. I was so depressed and I couldn't see a way out of it. I just couldn't visualize living the rest of my life with dizziness. But slowly, with time and VRT, I began to realize that movement, although it made me dizzy, was actually helping to improve my dizziness and imbalance. 

I recently read a post by Lauren Wootten, The Vertigo Therapist, who describes this process perfectly.

Lauren says "In *many* (but not all) vestibular conditions, the most effective way to decrease your dizziness symptoms is to actually make yourself dizzy. It seems counter-intuitive, and is often the opposite of what you have been doing. You come up with all kinds of strategies to avoid the movements and things that will make you dizzy".

She goes on to say "As soon as you start exposing yourself on a regular basis (in proper dosage and situation) to the things that make you dizzy, your brain does an amazing thing called 'HABITUATION'. Your brain starts to rewire itself to ignore that dizzy message, as it's no longer a useful signal. You are effectively desensitizing yourself from the dizzying movement or activity, allowing you to once again move more normally and get back to doing the things you want to do".

Lauren also states clearly that "Habituation is best suited to people who get dizzy with movement and activity and is not suited to people who have spontaneous or constant dizziness or room spinning vertigo".

What makes you dizzy, can be good for you, in incremental doses!

So now I'm trying to expose myself a little more to the things that make me dizzy.

My husband is a pilot we have a small plane. We used fly together a lot, but my vestibular disorder changed all that. I tried flying with him once before but pretty much kept my eyes closed the entire time. 

Yesterday, I took my new Nike slogan and decided to go flying with him, knowing that in all likelihood, I would get dizzy doing it. 

I took some anti nausea medication and a travel sickness bag (just in case) and we took off, And this time, I kept my eyes open.

Ready for take-off!

The view from here...propeller and all.

Almost touching the clouds.

Downtown Toronto.

Eyes on the propeller during the landing.

                                                            

Dizziness is my life now. So it would seem that I have two choices:- I can either stop living altogether, or I try to live the best I possibly can with this dizziness.

Now, please don't think for a minute that I'm encouraging anyone to take risks while dizzy. You cannot, nor should you ever - drive, operate machinery, climb a ladder or do any potentially dangerous activities such as down-hill skiing, while you are dizzy. But you can try to adapt some of the activities you once enjoyed or find some new ones. 

I can no longer run a marathon, but I can do a slow 5km run/walk. I can't do a full Zumba class, but I can do most of the moves if I omit the quick turns in the faster routines and just march on the spot.

I didn't choose to be dizzy, but here I am. So I might as well make the best of it. There are days when my symptoms prevent me from doing anything much at all. But when I am able - whatever I have to do, I 'Just Do It' Dizzy!

My 'Extra Mile' Friend

I used to believe  this quote wholeheartedly - that friendships would fall into one of the above three categories. But chronic illness changed all that. Some of the friends who I thought would be there for a lifetime, turned out instead to be there for a reason or a season. And vice versa.

One of the recurring themes within the chronic illness community is the sadness that comes from the loss of a friendship. A vestibular disorder can put a real strain on a friendship. Even a lifetime friendship.

A poem I wrote about changing friendships.

I have a friend who doesn't fall into just one friendship category - she actually falls into all three. My friend, Elizabeth. She is a season, reason and lifetime friend.

 I first met Elizabeth in 2008 when I joined a running group. We run at the same speed, so ended up in the same runners pace group.  We are also 'boy moms' who have sons that are approximately the same age. Elizabeth and I used to run many many miles together during marathon training and subsequently completed a lot of road races together. So over the years, we have spent a lot of time talking together. All of my very best running memories are with Elizabeth.

Niagara Falls International Marathon

Scotiabank Toronto Waterfront Marathon

The Egg-Nog Jog.

The Santa Shuffle

A race with our boys.

Once I became ill, the terms of our friendship changed. The balance shifted from a mutual 50/50 give and take relationship, to one where I was receiving more than I was able to give.  Now unable to run, I assumed that our friendship would eventually fade and die over time, as it did with most of the others in our running group - since we no longer had a shared interest of running. But I'm happy to say in this case, I was wrong.

The very first time I had to cancel plans at the last minute because of the way I was feeling, this what  Elizabeth did....

Delicious. Thank you. 

She called my husband and told him not to worry about dinner that night, and she then showed up on my doorstep with a cooler and a prepared dinner for my whole family.

She faithfully contacts me to initiate a get together. Often it's a walk, but sometimes it's coffee. And then there are days where we don't really do anything at all.

A walk in the woods.

What used to be our long marathon training runs have now become long walks instead. We walk and we talk.  Elizabeth is a great listener and always helps me to see that although things may seem dark, there is still a brighter side of life. And on the days when life feels overwhelming, she distracts me with her wonderful life stories. Although we can no longer run for miles and miles at a time like we used to in our running days,  Elizabeth never fails to go the extra mile for me. I call her my 'extra mile' friend. She is very special.

There is no way I could repay her for all the little things she's done, but I've often wondered how I could show my appreciation for her. Then yesterday, thanks to VeDA, I knew exactly what I could do....

VeDA has an appreciation award, for family or friends who've extended themselves  and who have really helped someone on their vestibular journey. It's called the OWL award, which means 'One Who Listens'. 

I've decided to nominate Elizabeth, my extra mile friend, for the OWL award. I hope she wins - she really deserves it. 

Also, a shoutout to some other lifetime friends, who've gone the extra mile (and beyond) for me as I've adjusted and learned to live with my vestibular disorder....Nicky, Weny, Katy, Catrina, Taina, and Anna Marie. Thank you.

Do you have a friend, who has gone the extra mile for you? Perhaps you could nominate them for the OWL award?