Thou Shalt Not Smile.

Uh-oh. It seems that I inadvertantly broke one of the Ten Chronic Illness Commandments the other day.

Thou. Shalt. Not. Smile.

I'm actually being a little sarcastic here. There aren't any Chronic Illness Commandments. Are there?

Recently I asked a non dizzy, social media savvy friend of mine, to take a look at my Facebook page.  I'm doing a bit of an overhaul and I valued her imput. After spending some time looking at my page, she called and said...."I think you might be smiling a little too much in your pictures", to which I replied "Doesn't everybody smile in their pictures?" I mean with the exception of your passport or a mugshot, aren't you supposed to smile in pictures? 

She went on to say that I could be 'misrepresenting' my vestibular disorder and doing a 'disservice' to the chronic illness community by smiling too much. 

Wait, what? Am I?

She concluded "you might want to show yourself looking a little bit sicker..."

Whoa. Okay, that's where I have to draw the line.

Now, while I wholeheartedly agree with her on some level - people do need to 'see' how bad this illness can be, I definately will not be making myself look sick just to convince people that I have an invisible disabilty. 

When we smile, people don't see that we're suffering.

I know there are quite a few chronic illness pages where people will post a picture of themselves on a bad day looking absolutely dreadful. And it's true that these pictures send a very strong and powerful message about how awful and debilitating this disorder can be. However, I personally do not wish to post pictures like this, for a couple of reasons:-

Firstly, when some people are sick, they actually look sick. I don't. Ever. Even on my worst days I don't look that bad. This disorder is invisible for all of us, but my dark brown skin tone adds yet another layer of invisibility. I don't turn pale or look washed out when I'm nauseous. I don't get red and flushed when I'm panicked or anxious. I just look the same. This illness does not reflect well on my face.

Secondly, all the people who follow my page are also dizzy too. They have the same bad days that I do and already know how awful it is. I don't think that posting pictures of myself during a flare would  either be inspiring or encouraging to them.

Finally, although I have a public page, I am a private person. I don't believe that everything needs to be posted on social media. People don't need to see the messiest side of my life in order for it to exist. I don't post pictures of my untidy bathroom, disorganized linen closet or garage full of junk either.

So, does a smile send the wrong message?

Perhaps. A smile can be misleading. Some would say that it minimizes the suffering or it suggests that you might be feeling better than you actually are. But does that mean that you should never smile then? The people who need to 'see' your illness in order to believe it, are probably the same ones who will no doubt say that you're faking it when presented with photographic evidence.

But maybe a smile tells another story...

If a woman is smiling while holding her newborn baby, it does not for a minute suggest that she therefore must have had a painfree and easy labour. A marathoner or endurance athlete smiles when crossing the finish line, but that doesn't take away what they had to endure in order to get there. In fact if anything it makes their smile so much sweeter. A smile can be an indication that you went through something that was painful or difficult and came through the other side. A smile can simply be an outward sign of an inner victory. Victory in the face of chronic illness.

All smiles - but both of us really struggled through this marathon.

Living with this disorder is hard. Isn't it enough that we have to have this condition for life without being told not to smile either? When vestibular neuritis forced me to sign the chronic illness agreement in June 2018, I never checked the box in the fine print that said I would agree to never smile again.

This is Facebook. Social media is the place where the majority of us try to show our best side. We take hundreds of vacation pictures and only post the best 12. We take about 10 selfies in order to get the perfect one. Aren't people with a chronic illness allowed to do that too? Can't we document our successes and healing without it being misinterpreted? There aren't that many pictures on my camera roll where I am smiling between 2018 and 2019, because I was so depressed and so very ill.  But last year I turned a corner and saw something in the distance...

...what I saw was hope - and that made me smile.

*And if you need evidence that I'm not always smiling you can read this post or this post*

Plot Twist

 

It would've been perfect. It could've been perfect. It should've been perfect.

But it wasn't.

At 3am on Christmas Day, with the snow falling, having the white Christmas that everyone dreams about...there I sat - bawling my eyes out.

Let me rewind a little...

The first signs of nausea started unexpectadly 6 hours earlier. I took some anti- nausea medication, hoping that it would pass. It didn't. By midnight, I was really dizzy and feeling sick. It felt as though I was sleeping on a waterbed. By 2am, whenever my husband turned over in bed, it felt like a tsunami. So eventually I got up and went to sit on the couch. I looked at all the unopened gifts underneath the Christmas tree and started to cry. I've come to know my symptoms. These were the classic telltale signs of a full on flare. And there was absolutely nothing I could do about it.

I'd been planning Christmas for weeks. I ate well, slept well, exercised well, paced myself, practised good time management, shopped online, avoided the mall, avoided stress, and was well prepared for everything. Everything that is, except actually getting sick on Christmas Day. 

Sometimes you can do everything right and it still goes wrong.

I was frustrated, disappointed, but mostly I was angry. Angry, because it seemed like all the preparations were for nothing. I mean seriously, there are 364 other days when I could've had a flare and it wouldn't have mattered as much. But it was Christmas Day. I'd made a new Sausage, Chestnut and Apple stuffing I was looking forward to trying and we'd planned some fun party games for after dinner. And now there would be none of that. At least not for me.

But I suppose that is the nature of this condition. It's unpredictable. The symptoms are sneaky and can come without warning. They can happen to anyone at anytime. Even people like me, who has spent the last year of my life trying to make lemonade from the 10 tonnes of lemons that were dumped on my doorstep when I got this miserable disorder. People like me, who try to view this disorder through a different lens and preach my own brand of Pinterest style positivity from my blog. The truth is sometimes you don't feel positive about it. At all.  This disorder just sucks and you have a right to be angry about it and work through those feelings.

For a while I sat there feeling sorry for myself. That is until I was haunted by the ghost of my Christmas past (2018 - most miserable Christmas ever - never be repeated) so I stopped right there and I didn't allow myself to give in and succumb to those feelings. I didn't want to sink to that level of despair. Christmas was still going to be fun for my family. And all the advance preparations helped to make things a little easier for them. I sat on the couch for most of the day giving instructions for dinner preparation and when it was ready, I sat down for dinner with them, even though I couldn't eat it myself. I wore the silly tissue paper party hat that comes in the Christmas crackers. I laughed at the corny jokes. Oh, and I even had a sip of muscato after my anti nausea meds kicked in (now, I don't recommend that you do that, but that's what I did!)

This was in my fortune cookie on Dec 29th - HA!!!

With this illness it is probably wise for me to expect that things could go wrong. I know that sounds pessimistic, perhaps even fatalistic. But personally I think that it is realistic. I've had to cancel too many events and activities to think otherwise. And like a woman at the end of the third trimester of pregnancy - with an emergency bag packed and sitting by the front door - you have to prepared and ready. Because...

Always be prepared for a plot twist. Prepare for the worst, but always hope for the best.

If it goes wrong, I won't be at all surprised, because I fully I expected it. But if it goes right...well, you better believe I'll write a nice postive post about it.

And by the way... the Boxing Day leftovers were great!

Day Twelve - Hope

 On the twelfth day of gratitude, I am grateful for hope.

I didn't always feel grateful or hopeful. I thought hope could only exist if I would one day make a full recovery. Recovery isn't an option for me. Permanent does indeed mean permanent.

So today, this is what I hope for :-

I hope for good days,

I hope that there are more good days than bad,

I hope to have less flare ups,

I hope that my bad days remain manageable,

I hope not to develop new symptoms,

I hope to eventually take no medication,

I hope to get better at being sick,

I hope to one day work again,

I hope to continue to write, encourage and inspire others on a similar vestibular journey,

I hope you all have a Merry Christmas,

I hope there will one day be a cure - maybe not for me, but for those who will walk behind me.

I believe you can be both chronically sick and happy. I know this because I am.

And I am abundantly grateful.

I hope you've enjoyed reading this. What are you hopeful for? 

Day Eleven - My Family

 On the eleventh day of gratitude, I am grateful for my family.

I believe the only thing more difficult than living with a vestibular disorder, is living with it alone.

Of all the days of this gratitude challenge, this post is by far the most difficult post to write. I just cannot seem to find the right words that will adequately describe how grateful I am for my family. I couldn't have got through these last few difficult years without their unconditional love, support, encouragement, prayers and strength. I simply could not. It doesn't feel as though we are separated by an ocean, because they take up such a large space within my heart.

They are my favourite people in the whole world, and I'm so glad I was born into my family. How lucky am I?

To my sons, thank your for lowering the bar and your expectations of me. Thank you also for stepping up and doing so much more these days, because I no longer can. I'm sure one day your future wives will thank me for this.

And to Roger, my husband - 32 years ago, you made a vow..."For better or for worse"... "In sickness and in health". Well, the past couple of years have truly flipped the balance and tested your commitment. There are now more worse days than better, and definately more sickness than health. Thank you from the bottom of my heart for keeping your promise.

I'm so very grateful. And I love you.

Day Ten - Faith

 On the tenth day of gratitude, I am grateful for my faith.

I think everyone needs something to believe in, whatever that something may be.

Love. Stars. Science. Religion. Gods. God.

Growing up, faith was an integral part of my family. I don't ever remember a time when I didn't believe in God. Over the years, there were times that when my faith waivered a little and sometimes there were even difficult questions about God, but ultimately I always believed.

That is until 2018, when I became chronically ill.

At first I accepted the condition and thought that in order to get better, I somehow just needed to pray harder. Then, I thought there might be some miraculous healing, like in biblical times. Unfortunately that didn't happen either. Eventually I received a permanent diagnosis. I was never going to get better. It was then that I became really angry and turned my back on God. How could God do that to me? And why? 

But here was the dilemma, I found it was much harder, at least for me, not to believe.

 So, with what little faith I had left, every time the vertigo spells came, and I was brought to my knees,  literally and figuratively - I  started to pray.  And through those weak, tearful, earnest and heartfelt prayers...I began to have a real sense of peace.

Peace in the midst of the storm.

Yes, I still have questions, but I've come to realize, there are some questions that will never be answered in this life.

 All I know is this - on my really tough days, when I'm so ill, spinning and dizzy and it feels like my whole world is falling apart. When everything that can be shaken, is shaken and everything that can be taken, is taken, I'm left holding on to the one thing that keeps me rooted, grounded and anchored.  I hold on to my faith.

And for that I am grateful.

(Psalm 56 vs 3....When I am afraid, I will trust in you...)

Day Nine - Confidence

On the ninth day of gratitude, I am grateful for confidence.

It took a lot of confidence for a private person like me, to step out into a public space and start my own Facebook page. I started with two poems and one blog post. I was really nervous

I was nervous because people may not like what I have to say. 

I was apprehensive that people may critisize, misunderstand or misinterpret what I have to say.

I was worried that people would compare what I was saying, to others.

It's true, there are lots of dizziness pages out there. Lot of people doing the same thing.

Paint Nite - the same, but different.

And there are many similarities. But if you look closely, there are also differences. Everyone's story is unique.

 

So many interpretations.

No one can tell my story with the same insight, experience and perspective in which I tell it.

Each one is unique.

 My style of writing isn't for everyone. Poetry isn't for everyone. Some like it, others don't. And I'm ok with that. Sometimes my posts will get quite a few likes and sometimes none at all. I'm ok with that too.

It is my hope that my journey will help someome on a similar journey. I'm happy that I found the confidence to step out of my comfort zone and share my stories with you.

And I'm grateful, that you take the time to listen.

Day Eight - 2020 Vision.

 On the eighth day of gratitude, I am grateful for 2020 vision.

Prior to the Covid 19 pandemic, the term 2020 vision related to the standard test by which your vision was measured from 20ft away.

Today, in the light of the pandemic, it can also mean the way that people now see what is now valuable, meaningful and important in life. The year 2020 has given us all some perspective.

2020 vision - looking at life in a new way.

Perspective changes things. And by looking at something differently, you can often see something completely different.

So, this year I made a conscious decision to look for the good things in my life as it relates to my vestibular disorder. When I did that, I actually started to see the good.

I adopted a new mindset.

I began to reframe the negative thoughts with more positive ones

I started to see myself as a strong person with some physical limitations.

I stopped focusing on the things I couldn't do, and started to see the many things I could do. Now the list of what I can do keeps growing. 

My diagnosis hasn't changed, neither has the prognosis. My symptoms haven't changed.What has changed is my attitude, my outlook and my perspective. And that has changed everything.

I am strong because I persevere, I endure and I don't give up.

2020 vision has allowed me to see the strength I already possessed, and for that, I am grateful

You. Are. Strong.