I Want To Give Up

I've been discouraged this week and I just feel like giving up. Of course I'd like to be done with my vestibular disorder, but I also feel like giving up writing.

I received some negative feedback both publicly and privately about a post that I wrote. I also lost a few followers on my Facebook page too. And it's all weighed very heavily on me.

Now, I should also say that I have received some positive feedback too. However, it's always the negative voices that scream the loudest. And those are the voices I've been listening to.

Writing has become very important to me recently. It's somehow been a way for me to process my feelings about living with this disorder. But these last few days have made me wonder if it's worth it or why I even bother. I thought about deleting both my blog and my Facebook page, and with my finger hovering over the delete button, I was reminded of another time when I came close to quitting something important to me. I almost quit my first marathon.

I started running on my 40th birthday My initial goal was just to lose a little bit of weight. But eventually I fell in love with running and joined a running group. Within in few years I'd run five half-marathons, so running a full marathon seemed to be the next logical step.

Throughout my twenty four weeks of marathon training, I was one of the slowest runners the group. I found the training really difficult, and always seemed to be straggling behind. Most of the other marathoners in my group had set a specific time goal for the day of the race.. As for me, I personally didn't have very high expectations of myself. I simply wanted to finish. 

Marathon Group ready to race.

The day before the race, I had an accident while gardening and spent three hours in the emergency department. I'd badly burned three fingers of my left hand on the engine of the lawn mower (don't ask!). I expressed my concerns to the attending physician...he simply laughed and said "Unless you're planning to run the marathon on your fingers, you'll be fine"

But I wasn't fine.

Right from the start, I was having a hard time keeping up with my running partner, Chae. We had trained together, and if anything, I'm a usually a little faster overall. But by the 21 km mark, I was falling behind. I told Chae to go ahead and promised I'd be right behind her.

By 25 km's, my fingers hurt, my legs felt heavy and the first signs of fatigue began to set in. I slowed down even more.

I don't remember much about the next 10 km's, except that I was going through a busy park with very narrow paths. I saw lots of families, strollers, people on skates, people walking their dogs, but no runners or mile markers. Somehow I must have taken a wrong turn. I was lost. 

Eventually I got back onto the the right path and crossed the timing mat at 35 km's. I was now on the highway and stared at the long road ahead of me. I still had 7 km's to go. I'd been running for hours and my legs had turned to Jell-O. I was exhausted.

Close to tears, I started to walk. Thinking that music might be a good distraction, I got out my sons iPod. But since I could neither run nor walk to the beat, I found the music irritating. Actually it was annoying. I tried putting the iPod back in my pouch, but it wouldn't fit right. I then tried to tuck it inside my shirt, but it was too uncomfortable. In a fit of frustration I  just threw it to the side of the road. Yes, his new iPod discarded like a candy wrapper. I'd had enough. I think this is what they term "hitting the wall". The point in the race when you run out of physical energy and have to rely on mental strength.  I'd heard about "the wall" but it was supposed to be for a fraction of the race. For me, the entire race felt like the Great Wall of China. I wanted to quit.

At around 37 km's I came to an intersection. The police officer who was directing the traffic, blew his whistle and raised his arm to stop the cars so I could safely cross. I tried to run the few metres it took to cross the street and couldn't even do that. I was so embarrassed. The police officer yelled at the drivers "Stop - marathoner coming through..." I angrily spat back at him "I am NOT a marathoner". He took my hand and very quietly and very kindly said, "Young lady, even the last marathoner is still a marathoner"! And then I completely lost it.  I took one step toward him, buried my face on his shoulder and burst into tears. Right there in the middle of the street, I sobbed my heart out on a police officers shoulder. After a few moments, he said, pointing to his watch... "I have a job to do, and so do you..."   Gently pushing me forward, he said "Keep going..." while the drivers clapped and honked.

Although running was difficult at this point, I managed to alternate between a slow jog and a faster walk. His kindness and his words had strengthened me a little. I began to think that it might be possible to finish the marathon after all. Yes, I would have a very slow finishing time, but it would look a lot better than seeing DNF (Did Not Finish) on the results page.

On and on I struggled over the next few kilometres. Each step just seemed to get harder. There were a few runners ahead of me, but fewer behind. I started to see people who had finished the race walking back smiling and wearing their medals. Cars honked and the drivers told me to keep running. Run? I could hardly walk. My legs had turned from Jell-O to cement. Everything hurt. But mostly my pride. I was publicly falling apart and it was humiliating.

At 40 km's I saw my husband and son walking towards me. They'd heard from Chae that I was having a tough time and set out to find me. Upon seeing Roger, all the emotions came flooding back. I told him I wanted to quit. "It's over. I'm done. Go get the car, because no medal is worth this amount of suffering". My son, Ethan began to cry too and even offered to finish the race for me. My husband explained to him, that neither of them could do it for me,  but they could do it with me.

And that is exactly what they did. They walked beside me and encouraged me to keep putting one foot in front of the other when I so very desperately wanted to stop.

"Keep going..."

A few metres before the end, I turned the corner and at last saw the finish line. My husband and son stepped aside and let me cross the finish line alone. In that moment, everything became a blur. I remember hearing the announcer say my name. I remember someone placing the medal around my neck.  I remember feeling relief at finally being able to stop. But then, I heard cheering - really loud cheering. I wiped the tears away to see my marathon group in front of me. All of them. Every single member of my group had waited for me. Some of them had finished their own race two and a half hours before me, but they heard that I was struggling and waited to see me finish. They were happy for me they celebrated with me but mostly, they were proud of me. What I saw as weakness, they saw as strength. I was speechless.

I'm a marathoner!

But perhaps the most touching part of my marathon story took place afterwards. Two weeks later I found a message in my Facebook inbox that I'd somehow missed. It simply said this:-

Hello Elaine,

You don't know me, but I saw you running the Toronto Marathon yesterday. I noted your bib number, and then searched  for your name and was happy to see that you finished the race.

When I saw you, you were crying and having a hard time. I didn't think you would make it, but I'm glad that you did.  I'm not a runner myself, but I've decided to run a marathon.

Thank you for inspiring me.

Michael 

Wait, what???

He was inspired by me? How? Why? I was struggling. I was crying. I was walking!

Then I realized he wasn't inspired by the fact I struggled, he was inspired because I didn't quit.

Again, speechless.

I feel that running a marathon is a lot like living with a vestibular disorder. It isn't a one time event that you train for, complete and then receive a medal and a t-shirt. No, a vestibular marathon is something that you live daily. And it's hard. Very hard. For each one of us it's an individual journey and for some of us it is much harder than others. People can have these debilitating symptoms for years. Even decades. It is both physically and emotionally draining. And sadly with a vestibular marathon, there is no finish line.

If you find yourself struggling in your vestibular marathon today, it is my hope that there is someone who will give you words of encouragement, like the police officer did for me. I hope that during your most challenging moments, there will be someone who can come alongside you and walk with you, like my husband and son did for me. Finally, I hope that you will find yourself surrounded by a group of fellow vestibular warriors, that know exactly what you're going through, and can celebrate both the struggles and the victories with you.

So, although I've been discouraged about my writing lately, I probably won't quit. Why? Because there might be someone reading this right now, who sees that I'm struggling and is inspired to keep going. 

And since every marathoner is awarded a medal, here is one for you. Congratulations on surviving another day of your vestibular marathon.

Living with permanent?

Chances are if  you have children (or a pet), they've done some sort of damage in your home at sometime that is permanent or least long lasting. Chances are you've also got some kind of product under the sink or in the garage to undo, cover up or remove the damage.

I can think of three occasions where my  two sons eldest son left damage in our home.

Once, when he was around two years old, he got into my glitter nail polish and left a trail on the wall, from the bathroom, through the living room, all the way to his bedroom. He was caught red-handed. Or perhaps I should say 'glitter handed'! We ended up repainting the rooms. Another time he wrote a message for me on our dry erase whiteboard. With a Sharpie. Yes, there was a dry erase marker for him to use, but he really wanted to get his point across. Wrote it in all caps too. We replaced the whiteboard and locked up the Sharpies!

But the most permanent damage has been to my dining room table.

Many years ago, both my boys were doing their homework in the kitchen and kept fighting with each other. So I decided to separate them. I sent my eldest into the dining room to finish his homework, thinking that since he was older, he would be more responsible. I was wrong.

Well, a week or so later, I was polishing my dining room table and I noticed something. My son showed his disdain for his homework by inscribing his 'feelings' deep into the grain of my table.

He was doing math at the time.

He also showed his disdain for his brother? Or perhaps me? Or both of us? A second inscription.

I'd like to think it says 'fork'!

I was furious.

I looked into having my table refinished, but because the damage is so deep, they said they would have to really thin out the wood and it couldn't be done. I also thought about replacing the table, but I didn't want to because I love this dining room set. So I've just had to learn to live with it.

 Now, at Christmas, Thanksgiving, Birthdays or when we have guests over, I have to get a little creative with my place settings and decorations so as to cover up his wood carving, but on the most part, I've learned learned to live with the damage.

In the same way, I'm learning to live with the permanent damage of my vestibular nerve caused my bout of vestibular neuritis in 2018. Sometimes I have to get a little bit creative and adjust my life according. Some days I'm actually successful at it. Other days, not so much.

 My sons piano teacher would never say "practice makes perfect" as the most common saying goes. She would instead say "practice makes permanent". Everyday I get to practice living with this disorder. And everyday that I practice, I get a little better at living with it.

And would you know, there are even some days that I polish my dining room table...and smile.

When vertigo feels like 'The Game Of Life"

At my house, Friday night is traditionally a board game night. This started many years ago when my boys were younger. Nowadays, with girlfriends and jobs they usually have other plans on a Friday, but my husband Roger and I, may still get out a deck of cards or have a game of Scrabble together.

 It was while we were playing Scrabble the other night and he was beating me (again), that I thought to myself  'this is just like my vestibular disorder....I can't do anything with these letters...'

That got me thinking and I wondered just how many of the board games in our basement had some similarities with my vestibular disorder. Here are the 10 board games I came up with:-

Scrabble: When every single tile you draw is a vowel, you're kinda stuck and have to miss a turn. With a vestibular disorder you are forced to miss out on a lot of life and important events until your symptoms are more manageable and you can once again join in.

Twister: This one is pretty self explanatory. The symptoms of your disorder physically leave you all over the place. Quite literally.

Monopoly:  When you land on "Go to jail. Go directly to jail. Do not pass 'Go'. Do not collect $200.00". It can often feel like the world is going on without you while you are stuck in your own personal jail with your symptoms. And somehow you never seem to get the elusive 'Get Out Of Jail Free' card!

Operation: So much skill is required to remove the body parts without triggering the buzzer.  In the same way when you're experiencing a flare of symptoms especially with vestibular migraines, you have to move slowly and carefully to avoid exacerbating your symptoms even further.

Pictionary: When you have to draw a clue and leave the other team to figure out the solution. This reminds me of going to the GP, ENT or Neurologist and explaining your symptoms to them, while they stare blankly as if they don't have any idea as to what you're talking about.

Kerplunk: Another game where skill is required to remove the sticks without disturbing the marbles. Once again, this reminds me of moving slowly and cautiously through the day, so as not to trigger a flare of symptoms.

Clue: When all the players have to try and solve a murder mystery, When you're passed out on the bathroom floor and wondering what caused your vertigo attack this time. Was it the weather? Was it something you ate? Was it bright lights? A loud noise? Was it....?

Sorry: When you're waiting to get a "1" or a "2" in order to begin the game while everyone else is moving around the board. This reminds me of being stuck at home with my symptoms waiting for them to pass, while everyone else is moving on with life.

Snakes and Ladders: This game is so similar to going through successful VRT and then experiencing  vestibular  decompensation. You can be doing so well in your recovery, when suddenly you land on a huge snake, and it almost takes you back to the very beginning. So frustrating. 

Game Of Life: This game is all about the spinner. You use the spinner to advance through life and win the game. Seriously y'all...I'm  dizzy and spinning my way through life. Not sure I'd call it winning though.

Bonus Game.

Apples to Apples: A hilarious game of comparison. This reminds me of  when you first experience vertigo and you're trying to find answers by comparing your symptoms to those of other people in order to find out what is "normal". Although our symptoms are NOT in the least bit funny, some of them are most certainly bizarre.

This post is not to be taken too seriously, I was just struck by how much my disorder spills into every aspect of my life. Even when I'm only experiencing the mildest of symptoms and trying to have fun on game night.

Do you have any different board games that you think have some similarities to a vestibular disorder? Please share your ideas and leave a comment. I'd love to know. 

Gotta go. It's Friday night. And you know what i'll be doing!

Acceptance Is The Key

Do you remember back in school when they had 'Sports Day', and the dreaded obstacle course? I do. And not too fondly either. Firstly, because I wasn't any good at sports. Secondly, but perhaps mostly, because of the obstacle course. I hated it.

The obstacle course was usually held at the end of the day, so you went into it already tired. It involved a series of obstacles, ranging in difficulty, that you had to pass through or over in order to finish the event, cross the finish line and get the prize. I found that they usually placed the most difficult challenge at the end. I also found that it usually involved some form of climbing activity. And I was hopeless at climbing.

It occurred to me, that my journey with vestibular neuritis has been very much like the Sports Day obstacle course. I've had to successfully overcome some difficult challenges and go through some very difficult emotions to finally reach acceptance and come through on the other side.

According to the Kubler-Ross model, there are five stages of grief that you have to pass through in order to move on and find peace. Although the five stages of grief was given as a framework for people going through grief relating to death, it is now widely recognized that people with chronic illness also go through these stages when coming to terms with their significant loss. The loss of themselves. 

 Today, some would say there are as many as seven stages and some claim even more than that. What's important here, is not the number of stages, but the fact that you have to go through many stages to get to the final stage...which is acceptance.

 

Acceptance is the key.

Acceptance does not mean you have to like your situation. It doesn't mean you won't still cry or feel sadness about your situation.  And acceptance certainly doesn't mean you should act as though you've got it all together, when you really don't. It simply means that you have accepted that it is unlikely your situation is going to change and you're okay with that. 

Exactly 365 days ago, I spent the entire day crying. I know this, because it was my birthday. My first birthday with vestibular neuritis. I was so very sad, I didn't feel like celebrating and the entire day was miserable. But somewhere between that day and this day I've gone through some stages and passed over that last difficult climbing obstacle and finally reached the finish line and got through to the other side. Acceptance.

Now, you must excuse me...today is my birthday and this year I'm going to celebrate.

A Hard Day's Night.

Some days with a vestibular disorder are just hard. There's no getting around it. There's no sugar coating it. There's no putting a Pinterest inspirational quote on it. And there's no cliche for it. It's just HARD.

I'm not being a Debbie Downer. In fact, I'm quite the opposite. I'm usually your glass half full type of girl. I'm usually the optimist. The optimist in me would normally say things like -  "There may be bumps in the road, but at least it's leading somewhere". Or "Sometimes when you're in a dark place, you think you may have been buried, but you've actually been planted". Or "When it rains, look for rainbows, when it's dark, look for stars". I spread optimism around like butter on warm toast - but right now the toast is burnt and I'm all out of butter!

Perhaps all of this is because I'm so very tired. My symptoms have flared again and they are particularly noticeable at night when I'm in bed. It feels as though I'm falling through the bed and that feeling keeps waking me up.  I maybe got an hour of sleep the entire night and still had to get up at the crack of dawn to drive my son to work. And nothing looks good when you're tired. 

Also, it's VeDA's Steps-2-Balance fundraising campaign in a few days and my symptoms are making it very difficult for me to follow through on my personal fundraising campaign goal. I still haven't committed to it as yet.

The reality is this disorder makes life very unpredictable and prone to plot twists. So, I'm taking the pressure off myself today. Not planning anything, not doing anything and will simply acknowledge and accept that today is one of those hard days. The end.

Or maybe I'll try a little dandelion therapy. Weeding is very cheap therapy for me. All it costs is time and a little bit energy. And not too much energy is required today either, because it rained last night and  it is so much easier to remove the whole root when the ground is wet.

Well, look at that...I found my optimism. And I guess I've already been productive without even knowing it. Because I just wrote this post! 

Cancelled

It was about this time last year, May 2019, that my symptoms had started to flare up and I was feeling really bad. So bad in fact, that it sent me crying to my GP. As expected, she wasn't able to help, but she referred me back to the ENT who had originally tested and diagnosed me with VN in January, 2019. She stressed that my referral was a priority. The ENT called back with their next available appointment - for September 2019. Great. Another 3 months with these miserable symptoms.  

My appointment with the ENT came, and he like my family doctor didn't feel there was anything more

that he could do, but because I was crying (again)  he referred me to a clinic at the Sunnybrook Hospital, with an appointment scheduled for May, 2020. Great. Another 9 months to wait with these miserable symptoms. I'm so glad that I was only feeling really bad as opposed to really, really bad!

Shortly after Christmas, I'm not sure why, but I started feeling better. And by the end of January, 2020, I was feeling a lot better. I'm not sure what had contributed to this new state of well being , but I was definitely enjoying it. February, March and April all continued with the same trend and my tally chart flipped. I was now able to count the number of bad days a month on one hand, when before it had been the  opposite way around. 

At the beginning of May, I remembered my upcoming appointment with the ENT. And I also remembered what kind of testing would be involved with that appointment. And I didn't want to go. I mean, why put myself through all that, when they were probably going to tell me what I already know, which is that I have permanent nerve damage in my left ear. 

For a few days I tried to decide whether or not it was worth keeping the appointment. I weighed up all the pro's and con's and finally decided to cancel the appointment. After all,  I was feeling so much better, and on the most part my symptoms are manageable. 

However cancelling my appointment proved to be more difficult than I could've imagined. Because of Covid 19, trying to get through to any department in the hospital is a complete nightmare. I was caught in the revolving door, robo-roundabout. You, know, when the recorded voice lists all of the options except the one you want, and you end up back at the place you started with the original message. This went on for about 30 mins. So I hung up and  tried calling the next day. Again, no response so I tried again a third time and eventually got through to a machine. I think I left them a message, but I'm not entirely sure. I asked if they would call back to confirm they received my message. They didn't. So. I was frustrated and quite frankly annoyed that I was then going to have to pay a $30 no show fee, when I'd been trying and trying to cancel and give them enough notice. Grrrr!

Eventually I accepted the fact that I was going to have to pay them the money and just chalked it down to experience. Then I got this email. They cancelled.

Well, this is the best possible outcome. I don't have to go to a hospital during the pandemic. I don't have to have any of the tests which will induce vertigo.  I don't have to pay a no show fee. But, I do get to speak to the ENT about any questions that I have. And I have a few.

I know for a lot of vestibular patients a cancelled appointment is unwelcome and unwanted, but for me, right now, it's a good thing. I'm not sure if the ENT will be able to tell me anything that I don't already know, but at least I have his ear for about 15 mins tomorrow. Can't wait.

Oops- I forgot!

Sorry, I realize it's been a quite a while since I posted.

It's not that I wasn't dizzy. Because I was.

It's not that I was absentminded. Because I wasn't.

It's just that I was distracted. But I was actually distracted in a good way.

You see, April is National Poetry Month. It's the one month of the year that is set aside

 to celebrate, appreciate, read and even perhaps write some poetry. 

This past April, we were in the middle of a global pandemic, 

and since challenges seemed to be the flavour of the month, 

I set myself a challenge to write a poem for each day in April.

 There were no awards or prizes, this was just a personal goal and a way

 for me to focus on something other than my dizziness.

Here are a few highlights:

 On Day 1: I wrote about...yes, you guessed it..dizziness.

Day 2: A little humour about forgetting to write that day. As you can see, I didn't.

Day 8: Had a little fun with my name.

And so it went on. All month. Writing, writing writing! 

I wrote poems about all kinds of things. But what was most important is that while I was 

busy writing, I almost forgot about my vestibular disorder completly.

 I know that at some point I took some medication for my symptoms,

but I think it was probably only twice in the entire month.

 What I'm saying is, sometimes it is good to forget things. And this was one of those sometimes.

 

At the end of the month, as if on cue, I woke up really dizzy.

 It triggered a memory for me and I wrote this...

That took me back to the beginning of my journey. I'd forgotten about how painful it was. 

It was good to be able to write about it. It was especially good to be able to write

 without all the associated feelings of grief and loss that I experienced at the time. 

Like a healed scar, I could remember without the pain.

 

Forgetfulness is not always a bad thing and distraction can be a good thing.

Especially when it comes to managing symptoms of a vestibular disorder.

But here's something I mustn't forget, May 17th to May 23rd, 2020 is Steps to Balance.

 

This is VeDA's annual fundraising campaign to help people with

vestibular disorders get some sense of balance and control back in their lives.

. Please consider a donation to this very worthwhile cause. 

I'm will be doing a challenge myself.

Stay tuned.