Friday, September 11, 2015

Take a Dizzying Walk In My Shoes

This morning as I sat up in bed the spinning hit.  Cooper sensed something was wrong he came over  gave me kisses, rested his head on my stomach and intently gazed at me.

If only everyone was as perceptive.  Living with an invisible illness such as vertigo is challenging.  Apart from me walking like I've had one too many or crawling to the bathroom during very severe attacks I look okay from the outside, so people assume I am.  They have no idea how during an attack my world is spinning like an out of control merry go round. 

Many people will never understand what it’s like to stare down the barrel of a complex medical diagnosis. That’s not to say they will never get sick. They will. But most of the time, it will at least be comprehendible. The implications will be clear. The treatment options will be explained and the doctor will be knowledgeable. They will know what to do next.

But for the unlucky few who suffer from something rather 
complex, there are no certainties. There is little understanding. There is confusion and even despair at times. Hope is simply not always part of the equation either. 

Most people have never heard of Migraine Spectrum disorder or Migraine Associated Vertigo.  Or the other various vestibular or central nervous system diseases that can be responsible for vertigo.  Maybe don't even realize that such things as one concussion can leave people with debilitating vertigo and dizziness.

When I was diagnosed, I had never heard of it either. But it’s out there, silently destroying lives in the shadow of the general public’s consciousness.  Sometimes think the specialists just give that diagnosis when they can't figure out what is causing it.  Even the specialist at John Hopkins kind of admitted that. He said maybe even one day it will have it's own category and more specific classification

I’ve tried to think of a good way to explain MAV, but it’s hard to express. There is nuance that gets lost in translation. If our closest friends and family don’t understand, it’s hard to be understood by the rest of society. And that’s a major hurdle for raising awareness.

So I’m going to give a shot, and try to explain what it’s like to walk in my shoes.  Imagine for a moment, close your eyes and think back to a time in your life when everything was good. Now imagine one day, you are walking along when all of a sudden, the world starts to violently spin around you. You hold on for dear life.

Unbeknownst to you, you are experiencing vertigo. It’s like you’re drunk, but you haven’t had a sip of alcohol.  Y
our brain, suddenly in shock, so to mitigate the perceived threat, a wave of nausea floods your system. The minutes turn to hours, and the world is still spinning. You’re terrified and confused, and you can’t walk. Not to mention a whole other host of symptoms that can accompany it.

In this moment of crisis it won’t occur to you, but there have been so many things you have taken for granted, processes quietly working away in the background of your brain to keep your world intact.
You believe equilibrium is a constant like gravity, but it’s not. Your balance comes with no guarantees. It’s controlled by your vestibular system and brain, and those systems can become compromised.

Hours or even days later, when the room finally stabilizes, you are left with more questions than answers. “What’s wrong with me!?!” you ask God, or the universe, or maybe no one in particular.

So you go to your doctor. But your doctor doesn’t know what’s going on either. If you’re lucky, you’ll end up visiting an ENT or Neurologist who has some experience with balance disorders. If you’re unlucky, you may end up going years before you speak with anyone who has any idea of what’s going on, suffering with no explanation.

Typically during appointments with specialists you hear things like " we’re going to have to run some tests, it could be Vestibular neuritis, Meniere’s disease, bbpv, ms
, tumor, cervical neck issues,
 etc." They admit often times they don’t know what causes it.  Finally when they exhaust all the tests, when all the specialists are seen even a trip to John Hopkins they inform you they believe it to be a form of migraine that causes vertigo instead of headache.  And that each attack makes it harder for the brain to compensate hence why the chronic dizziness and other symptoms remain.

Each attack of vertigo will leave you with a chronic dizziness and disequilibrium. It's such a horrible feeling, worst yet is the nausea it can bring on. During attacks my head feels like it's going to explode with pressure.  My ears feeling clogged.  A disorientation, a fogginess of sort takes hold of my brain. Trying to do a simple task like walk to the bathroom feels like torture. Sometimes there's a headache, sometimes numbness and tingling especially
in my left side fingers and foot, ocular migraines are not uncommon this is where the vision is blurred by bright color streaks or jagged lines.

The chronic dizziness that a vertigo attack can leave is even hard to explain in words.  The fact that it can stick around for weeks, even months is even crazier. 

You have to stop drinking caffeine and alcohol. You have to lower your stress. You have to eat a low sodium diet. You have to go on a special migraine diet. Are told don't participate or engage in anything that seems to bring it on. Simple things like looking down to write, read a book or use the computer can bring on the vertigo.  Worst yet are the attacks that come during sleep, there is nothing more terrifying than waking up feeling as if someone has strapped you into an out of control merry go round. 

You leave the doctor’s office scared and broken. You want to understand but nothing makes sense. Your problem just became very real, and very permanent.  You are given no real solutions or quick fixes.  There is no medicine that just takes the spinning away. You are told there are various medicines that may help but many come with their own set of serious side effects, some are even habit forming and none guaranteed to work. If you want to experiment with them you basically become a lab rat of sorts. Some even make the vertigo and dizziness worse.


Fact is the doctors aren't even sure what exactly causes it, let alone how to treat it.  Even in this great age of scientific advances and technology it makes you realize how very much still remains a mystery.

When you get back home you go to Google and you start searching. You try to figure it out. But everything gets worse, because so much of what you find conflicts with everything else you find.
Quickly, a picture of the worst case scenario becomes fixed in your mind. And all the while you’re suffering. You are having vertigo attacks. There is a constant feeling of pressure in your head.  You just want a normal life back.


Your job is in jeopardy, too. Your employers don’t understand. People even think you’re overreacting. That’s assuming you still have a job as for 
many working becomes improbable. Not to mention vertigo attack makes it impossible to drive, or even leave the house.  And when you aren’t having vertigo, you are still cognitively impaired by intense head pressure, brain fog, fatigue, chronic dizziness and more.

Nothing is certain anymore, and no one understands. You look fine, so no one thinks you’re sick, but you are, and in a debilitating way.  No one believes your pain or struggles, and you don’t know what to do next. Knowing there is no magic cure or pill feels defeating and incredibly scary.  Imagine your world is spinning, you can barely move...walking to the bathroom feels like climbing Mt
Everest, forget about eating, worst yet it could last for hours or days and there is nothing that will take the feeling away? 

It’s a dark picture, I know, and it’s easy to see why so many people lose hope. Some people are able to improve their symptoms with careful lifestyle management, special diets, physical therapy, alternative medicine and medication. But many are not. 

It's not an easy journey. And when the people around us don’t understand, it can make everything so much more difficult.  Having supporting people who are understanding goes a long way in the healing process as well.  Sometimes all it takes is one supportive person to give someone suffering hope and inspire them not to give up.  Possibility gives hope. 


On good days it feels as if we have hit the lottery.  You quickly realize how precious life is.  How any moment you feel good is a gift to be cherished.  On the good days you want to do everything... to make every moment count, do fun things, to live life to the fullest because you know on the bad days you will be stuck on the couch.

You try to remember what life was like before the vertigo and dizziness.   Realizing how much you took for granted.  How much you want those days back, to be able to do even more with those moments in which you felt good.

Even as I type this the vertigo is still lingering, which means I won't be able to do the errands planned for today.  I want to say that's life with vertigo, but there's the other side which boldly says fuck it.  Pardon the language but accepting the vertigo and dizziness isn't something that comes easy.

I despise that it interferes with nearly every aspect of my life.  It gets in the way of things that need to be done, on many occasions has ruined plans and interferes with my dreams.  The uncontrollable nature of it makes it feel both frustrating and scary.  Yet there's still a part of me that holds out hope for a miracle cure or magic pill.    

For now my life is filled with spins, some how hope the world around me can better understand what it's like to walk in my shoes.  What it's like to have an invisible illness.  By no means do I want it to define who I am because there is so much more to me than it but a little understanding can help a lot.

It has taught me many lessons two that stand out... never judge anyone until you have walked in their shoes, oh how true this is.  And more importantly.... appreciate every moment of life for what it is because nothing is guaranteed.

Just because you feel good today doesn't mean you will tomorrow, so make the most of today.  Years ago didn't know my world would spin or be left with a debilitating dizziness but if I had probably would have lived life a little differently.

So breath in life, live in love and have as much fun as possible.  You know a little live, love, laugh. And maybe show a little more compassion and understanding to those who cross your paths because you never know what's going on in their world. 










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