Dear Self...

I've been feeling quite a bit better recently. In fact, I've actually been enjoying an extended period of wellness. I'm almost afraid to write about it, for fear that I might somehow jinx myself.

Have I've turned a corner in my recovery? Perhaps. Will I do something that will trigger a flare up? Possibly. Maybe this period of wellness won't last? Almost certainly.  All I know is I am here now. And I'm happy to be here - because a year ago I never would've dreamed that this could happen.

When I first joined a Vestibular Disorders Support Group on Facebook, and saw posts about people doing normal activities with a vestibular disorder, I remember thinking to myself....how? And now here I am - living with vestibular neuritis. Not merely living, but surviving and thriving.

If I could go back over the last 22 months, there is so much I would want to do differently. Things I wish I knew then, that I know now. Information I now have, that could somehow have spared me some of the pain I've had to endure in this most difficult journey. I know that there is a certain amount of struggle in every journey. And some struggle is painful but necessary. However, I'm sure there are shortcuts that we could take to make it a little easier on ourselves, or get to a place of healing sooner.

If I could go back and talk to myself, I think I would mostly like to reassure myself, that it may not get better, but it will almost certainly get easier.

If you could go back to the initial onset of your symptoms, the pre-diagnosis, early diagnosis or acute stage of your condition days, what is the one piece of advice, word of encouragement or message of hope you would want to give to yourself? Please share your thoughts on Facebook under the link that brought you here, because what you would've told yourself, could possibly be the missing piece in the puzzle that helps to fix someone else.

If you would like to learn more about vestibular disorders you can visit VeDA

The Waiting Room

It has often been said that one of the most difficult rooms to be in - is a waiting room. So much stress and anxiety can happen while we're waiting for what's about to happen. And most of us are not good at waiting for anything.

When you have a vestibular disorder, a lot of time is spent waiting. First you wait to see your GP or an emergency room physician who will give you an initial diagnosis of vertigo. More often than not, you are then referred to specialist - an ENT or a neurologist (or both),  for diagnostic testing.  Once your receive your diagnosis you wait to start treatment and therapy. Then begins the slow process of  waiting for the treatment to work and for you to begin seeing signs of improvement. Rarely is there a quick fix for chronic dizziness. And with the current COVID 19 crisis appointments could be delayed even further. What was once a few weeks could potentially be a few months or more.

So what to do, while you wait?

When my children were small and we had to go to an appointment, I always made sure that they had a "busy bag" to keep them occupied while they waited. This distraction certainly took some of the misery out of waiting. Although the amount of time spent waiting was exactly the same, they barely noticed as they were so busy playing.

In the same way, as we wait for appointments, tests and therapy, we can either be active or passive during this time. The amount of time won't change, but what we do during this time could be beneficial in the future.

The Vestibular Disorders Association (VeDA) is one of the best resources for anyone with a vestibular disorder. You can go there to find all kinds of information on the different types of disorders as well as links to find local help and support. Family members can also be directed as to  how they can best support a loved one through their difficult journey.

YouTube now has a lot of great videos on vestibular disorders, both from people who live with a disorder and those who treat them.

You can join a Facebook Support Group and become an active member. The Facebook Support Group network has thousands of fellow sufferers who can often shed some light on your disorder and offer advice and coping strategies. I remember once asking a question to members of a group, that seemed really small and insignificant at the time, but the response and the thread that followed, ended up answering the question - not just for me, but also for others in the group who'd been afraid to ask.

But one of the best things I did for myself during my more acute stages of recovery, was to be aware of who I spent time with. I had to temporarily remove some people out of my life and spend more time with a select few friends and also more time alone.  Although socializing will not be an issue for most people right now, since we are all under lock down and in self isolation, there can still be a lot of negativity from other people that filters through the screen of your social media. It may be time to hide certain posts from certain people because not everyone gives out good energy. Be sure to have a lot of positive and uplifting people influencing you during these trying times.

As we all await the passing of this crisis and for things to return to normal, we can use this time to be actively waiting. Some days waiting might mean that we rest a little more, sometimes practice a little mindfulness to reduce anxiety. Sometimes it might mean we do a little exercise and sometimes we can do some reading and research into our disorder.  Now that the rest of the world has been thrust into a waiting room with us, lots of people are posting fun, interesting and challenging things to do online that help them pass the time and make the waiting easier. And since time is the healer of all things, you might just find that you start feeling a little bit better simply with the passage of time. You never know.