Amber’s Meniere’s Story
In October 2016, I was driving the 2 hour commute from work to home. I was in the 110km zone, thinking about dinner when my world was flipped upside down, and not just figuratively. I was 10 mins from my destination when without warning the outside world started spinning…….fast. I don’t know how I managed to pull the car over as the world felt very surreal in those minutes. I sat, sweating, anxious and confused for a few minutes until I thought the moment had passed. I cautiously pulled back onto the road. I didn’t feel right but being so close to my destination and driving ever so carefully I managed to get home. The feeling however hadn’t passed and kept hitting me in waves. I was taken to the ER and underwent tests to be told I’d had a vertigo attack. Take some Stemetil and go home, you’ll be fine.
Fast forward to now, and I’ve forgotten what a “normal” day feels like. After seeing numerous specialists I have now been diagnosed with endolymphatic hydrops, vestibular migraines and tinnitus. Lots of big words but what does it all mean? On a good day, I feel like I’m walking in a tunnel that’s slowly rocking from side to side. I see flashes of light (a bit like how your eyes go when you’ve looked at a camera flash) except the flashes don’t go away. I can’t focus on words in the distance such as posters or street signs. I have a constant high pitched noise ringing in my right ear that never stops. Sudden noises make me jump. The closing of a microwave door in the next room gives me the same anxiety as someone popping a balloon. On a bad day, I can’t move. I lie on the couch with my cat and hope to god I don’t vomit and pass out. The room moves at a speed that is incomprehensible. I’m sick to my stomach and I feel like every noise, every breath of air will break me.
Dealing with this condition isn’t easy. The advice from my ENT: reduce your salt, increase your water and exercise. I wish it were that easy. In addition to his advice, I’m still trialing medications. I’m seeing a physio to relieve the heavy feeling I get in my head and the stiffness in my neck. I get a small amount of relief from these visits. I’m learning a lot about what not to do or what to avoid; MSG, caffeine, fluorescent lights, patterned carpet/walls, noise, long drives, train rides, stairs, heights……this list is expanding daily. Some of these things can’t be completely avoided though. I’m a mum. I work full-time. I had to find a job closer to home to avoid driving. I have to take the train once a week in my role. Those days are the hardest. The rocking of the train, the rocking in my brain, the nausea, the lights, the sounds! I’ve tried hard to not give up on things I enjoyed before this condition came along. It isn’t easy. My art work suffers as my sight is impaired and I have a slight shake in my hands. My running…..well at times its a jog, sometimes a walk. Exercise seems to trigger me. I love running with my running group. Often my vision is reduced to a meter, I’m always expecting to fall. When I get to the end, I have to hold on to a pole until the world stops spinning.
I can see how people could let it get the better of them. It wears you down. Most people don’t “get it” because you look okay. I’ve had bosses tell me to take a train when I can’t drive. They don’t get that not only can I be motion sick on any type of transport, I can get motion sick trying to stand still. The workplace is the hardest because you’ve got a job to do. Everyone’s replaceable. I can’t afford to be unemployed.
I am lucky though to have good family and a couple of good friends that might not “get it” but know I’m struggling and help out; give me their arm to help me down stairs, drive me to concerts and babysit me in case I fall/spin out/can’t cope. Friends that drive hours to see me because I can’t drive to them.
I’m realistic enough to know that some of this is permanent. The ringing in my ears of a night as I lie in bed praying for silence is a constant reminder that some of this can’t be undone. But I do hold out hope that one day I will be able to manage some of this. I won’t give up. I won’t allow this to beat me.