Something Old, Something New.

Long before the Covid - 19 outbreak made 'social distancing 'and 'shelter in place' part of our daily lives and language, people like me with a vestibular disorder or some other chronic illness were living with similar types of restrictions. I was forced to leave my job, stay at home and have my mobility seriously restricted - not by the government, but by some of the physical limitations of my condition. And just like people all over the world, who are now having to find ways to keep themselves occupied and entertained during their quarantine, I've had to find ways to adjust and adapt to my everyday life with vestibular neuritis. I've had to revisit some  of my old hobbies and try out some new ones.


I've always enjoyed reading poetry, but now I'm enjoying writing it as a form of therapy and as a way to keep my brain active.

Better Days

I used to be a marathon runner, but running is no longer an option. When I tried to run in the past,  it felt as though the road was moving beneath me, and I was running on a trampoline. So my old 5 km running route has become my new 5 km walking route. I see so much more of nature now that I've slowed down a little bit to match the speed of life.

Baking has become my new favourite thing to do. I only used to bake for special occasions such as birthdays or Christmas, but now I bake just because I can. My family is enjoying this new pastime too, although our waistlines are beginning to suffer a little :)

Hershey's Hugs and Kisses Cookies
(With these cookies you can hug and kiss anytime - even while practicing social distancing!)

Apple Strudel Muffins.

Tiffin.

About the Tiffin...it's a special recipe. I've been making it for years, but it never, ever tastes the same twice, because I always change the recipe. The cookie base always contains 16 Digestive Biscuits, but other than that, I literally throw in a handful of this and a handful of that - whatever I happen to have in the cupboard. It's different every time. Always new. The Tiffin reminds me that  you can always bring something new to something old. You can indeed teach an old dog new tricks.

Long after the Corona Virus health crisis is over and life resumes again as it did before, I will still have this disorder and the limitations that it brings. Nothing will change much for me. I will still be unable to work full time, spend most of my day at home and have limited mobility.  I will still face the same old challenges as I did before,  but hopefully with a new and improved attitude and appreciation of what is truly important in life. Situations are always changing and we must change with them. I still don't like having this disorder, but I'm learning  new ways to live with it.

What are some of the some old hobbies you've begun again because of your vestibular disorder? What new things have you tried or are going to try? 

Worry. A Lesson From The Birds.

I noticed that the last few mornings have been quieter than usual. I haven't heard the birds as much as I normally do. When I checked the backyard bird feeder that is just below my bedroom window I found out why. It was almost empty.

 I went outside and everything seemed to be the same. Birds were everywhere, but there  were no birds forming a queue at the feeder. They weren't pushing and jostling to get the remaining seeds that had fallen on the ground below. They didn't poop on my car window in protest at my forgetfulness. And I doubt very much that they stayed up all night in their nests complaining about the shortage of food. They simply carried on being birds and doing what birds do. They found food elsewhere.

I've been a birdwatcher for years. I find it both calming and relaxing. And in all the time observing them, I've never seen a worried bird. Yes they have predators and instincts but I don't believe that birds worry. About anything.

We have all done a fair amount of worrying recently. Life with a vestibular disorder brings about anxiety on a daily basis. But while most of the world worried about toilet paper and hand sanitizer, I was far more concerned about having my anti nausea and dizziness medication. I have enough to last me for quite some time. I will be okay. Toilet paper never even registered on the worry scale.

So I'm taking a lesson from the birds. And from a bible verse. "Look at the birds in the air: They do not sow, or reap, or gather into barns, yet your heavenly Father feeds them...Matthew 6 vs 26.
I'm not going to worry. Worrying will only exacerbate my symptoms and I really don't need that on top of everything else right now. I'm going to focus my energy elsewhere and lay low until the storm passes.


And this just in...as of 30 minutes ago, there is toilet paper in my grocery store again.

I have enough, but bought some anyway.

And in case you were worried about the birds, I replenished the birdfeeder.

Today I’m Thankful For...

This morning I received an email which made me feel really thankful. I went online to find some clip art as a visual to write this post, and found that the images were predominantly Thanksgiving related with pictures of turkeys or Fall leaves and seasonal flowers. I thought it seemed a little sad that we have reduced thankfulness to one weekend of the year. But what about today? I’m feeling thankful today, for something relatively small, that has become pretty big to me - and that is the Vestibular online support community. Where would I be without you?

As I lay in bed this morning reading my emails, I wondered what it would’ve  been like to have my Vestibular Disorder 50 years ago? Even just 20 years ago? Not in terms of diagnosis or treatment, but in terms of support. I can’t even imagine. Because  most of my ‘healing’, at least in the non medical sense, has come as a result of the knowledge I’ve gained through my support groups. When doctors have been dismissive and disinterested, within these groups, I’ve felt heard, understood and validated. And I’ve felt normal.


With just a swipe of my finger I’ve become connected to a network of fellow sufferers who’ve been willing to answer my seemingly endless questions and offer sympathy, encouragement and advice when there was no where else to turn.

And so now I feel like I want to give back. I want to help someone navigate the murky waters of life with a vestibular disorder. I’ve been accepted as a volunteer for VeDA, with the hopes of one day becoming an ambassador. I feel as though I can now do something to help someone other than myself and for that I’m thankful.



So, I would like to start a thankfulness thread within our community. If you’ve been directed here via Facebook, please write something that you are thankful for today in the comments and hopefully lift the spirits of someone who is having a tough day. We can be thankful ...even if it’s not Thanksgiving.

Back To Square One (or something like it).

Here we go again. Back to square one. Again. Back to where I never wanted to be. Again.

“Welcome back Dr. Spall. We do hope you enjoy your stay. And please let us know us know if there is anything we can do to make your time here more comfortable...”This is the kind of welcome my husband receives when he goes to his hotel in Cypress, California once a month. He has stayed at the same hotel, five days out of every month for the last 20 years. He's a valued customer with status. A Titanium Elite membership is what they call it. And they treat him well. Very well. He actually looks forward to going back.

The same cannot be said about going back and repeating something painful. Or something
debilitating. Or both.

This was me in the Fall of 2017. Enjoying my fifties and in the best physical shape I had ever been in. I’d also finally got a place in the London Marathon after trying for 10 years. I was truly living my best life. But just one week later all that changed when I went to pick up my gym bag one morning and felt a sharp twinge. "It's probably nothing" I thought to myself and continued on to the gym as per usual. After all, I was training for a marathon!
At work the pain gradually got worse and worse. I could hardly concentrate. By 3.30pm that afternoon, I had to ask if I could leave a little earlier to go to the walk in clinic. I got into my car and sat down. It was then that I felt a pop and this
unbelievable burning sensation that radiated throughout my whole body. It was excruciating. I could barely drive. Five minutes later I  arrived at the clinic, but couldn't get out of my car. I almost passed out with the intensity of the pain. I screamed for help...it was that bad. My screams alerted a man who came over and assisted me inside.
I had, it turned out, ruptured a disc in my back. A herniated disc. People have asked me to describe the pain of that type of injury and I would always say "it would have been easier to birth my children through my nostrils'. What followed was nine weeks of painful rehabilitation. One I never hoped to repeat.

Fast forward to June 25th, 2018. The last week of the school year. I was looking forward to the two month summer break. The last few months had been just awful. So very painful and my nine week absence from work had created some tension between my teaching partner and myself. I was looking forward to a fresh start with the school year in September.  I went out for dinner with friends that night and we had a great time. I went to bed, turned over in my sleep and....VERTIGO! Anyone with chronic dizziness can more or less write the rest of this story. The rehabilitation for the vertigo has been so much longer. And in some ways much  more painful. Twenty one months and counting...

Two Fridays ago we had a very heavy snowfall. My husband and boys were not at home and I'd been feeling quite well, so I decided to clear the driveway.


Well that was a BIG mistake. Saturday morning I felt a twinge in my back. By Saturday afternoon I was flat on my back, in bed with a  herniated disc. It seems that I aggravated my old injury.
Oh and I think I mentioned the level of pain, right? Well just try to imagine that pain with a compromised vestibular system and not being able to move. At all! What. Fresh. Hell. Is. This?

So it would appear that it's back to square one.Maybe even further. Because this time I have the painful rehab of a back injury on top of a vestibular setback. Dizziness is through the roof right now. How lucky am I?

Still, I choose to be thankful. I have had a few friends who have visited with food for my family and some lovely flowers. Thank you Anna Marie, Taina and Weny.

Thank you Taina, for bringing the beauty of the outdoors, indoors.

Thank you Weny, dinner for two...in bed!

 Recovery is almost like a game of snakes and ladders. You get so far and you're doing so well and think you've almost made it, and then bang, you land on one of those stupid snakes. That's why it was a game I never really enjoyed playing. I've landed on the big fat snake. The one that takes you almost back to the very beginning. It's going to take some time to get back to where I was, but I'm confident I will get there. Slowly. Painfully. Eventually. But I sure could use one of those big ladders right about now.

I think re-injuring my back has bought me a life time membership of  the 'Snow Removal Exemption Club'. I will never pick up a snow shovel again. I never want to experience this level of pain again. Especially with vertigo.  My husband and sons had better take notice.


 And so I lie here, flat on my back and dizzy beyond belief. But I'm not feeling sorry for myself because there are still things I can do.  I can read,  I can write this blog post  and play a few levels of a game I actually do enjoy playing. Candy Crush. I'm killing it.

And to my husband, Roger. There are not enough words to thank you. I could not have survived this past week without you. Scrabble at 8pm ok?

Grateful To Be ‘Normal’

I never thought I would be grateful to be dizzy. Or at least just this dizzy.

Exactly one week ago I was lying in bed with a herniated disc. I could barely move because of the excruciating pain. The pain from the disc injury was bad enough, but then I started to feel dizzier than I normally do. A lot dizzier.

I’ve now learned that there is a term for this. It is called Vestibular Decompensation. Simply stated, it means that my brain had started to regress during my period of inactivity and I’d lost some of the progress I’d made compensating for my inner ear dysfunction.

But the funny thing is, in all the time that I spent wanting to feel better, I never once thought that better would be how I used to be. It never crossed my mind that feeling well wouldn't include dizziness. I wanted to get back to normal. And for me, normal is dizzy. Whoa....when did that happen?

I guess somewhere on the messy road to recovery, I became grateful for the smallest of things. The ability to move my head from side to side. To shift my body without pain. To sit up, then to stand up. To go to the bathroom unassisted. The list was endless.  I was so grateful to get back to the way things were before, and before was dizzy. I’ve actually forgotten now what life used to be like before Vestibular Neuritis. (although there are flashbacks from time to time)!
 Do I like being dizzy? No.

 But I've now learned, through painful first hand experience, that things could always be worse.

The ABC's of Support.

All of us
Battling
Chronic
Dizziness
Everyday
Fearful, it's forever.
Gradually, we find
Healing and hope
In others, whose journey is
Just like ours.
Kind strangers, their
Lives often
Mirroring our own. Making a 
New network of friends
Online. Offering answers,
Publicly asking 
Questions, and
Raising awareness through our
Shared stories of suffering and success
Together
United, by our
Various vestibular disorders,
We are WARRIORS who
X-emplify courage and perseverance
Yes...even in our weakness, with great
Zeal.