People with vestibular dysfunction live dizzy lives. We have to…we have no choice. My deaf and dizzy life started April 2016. I write about my life with vestibular dysfunction because I have a hard time explaining it in person. Mostly because until you have lived a day, a month, a year with it you will not remotely understand. Vestibular dysfunction is very much an invisible disease. I know the professional doctors I see who are specifically trained to treat vestibular dysfunction do not truly understand what we go through…how can anyone else in our lives that has not lived it understand us? Well may be if they read this they can start to understand.
I think about it like an iceberg what you see on top is someone having a vertigo attack….falling down, grabbing onto walls etc. But what you can’t see visually is under the water. The constant fight we have with our inner ear, eyes and brain all trying to understand the direction of gravity. The constant fear of loosing mobility, or looking like a drunk. The anxiety you feel because you never know if a vertigo attack is just around the corner. The pure feeling of distrust about everything around you because nothing seems solid or level. I am reminded of a fun house at a carnival where the floors are not level, there are designs painted on the walls to confuse the brain, mirrors placed to show awkward angles…all to make you dizzy and unstable….that is our normal every day life with vestibular dysfunction.
Having vestibular issues means that every day is a dizzy day. As an example last night when I got home my loving wife asked me how I was feeling. I had a hard day at work and was not feeling the best and told her I was deaf and dizzy. Later that night I reminded her that I had darts tomorrow. She suggested that may be I should not go out tomorrow since I was dizzy tonight. I love my wife and I know she will go to the ends of the earth to please me, but she still has no idea that I have been dizzy like this every day for almost 3 years. I don’t talk about it every day because I know I would sound like a broken record. Also I have to describe my deafness to almost everyone I meet so it gets tiresome to explain I am dizzy too.
My days are usually cyclical. I wake up with my vestibular balance basically “reset” almost every day. I usually have hardly any balance issues at the start of the day. Most mornings I am only dizzy if the lights are out or I have my head covered such as toweling off after a bath or changing close etc. During those moments I can lean up against a hard surface such as a wall or countertop for balance. Typically my dizziness is dependant on how much I stress my eyes, balance organ and brain throughout the day.
I know every day I will deal with a few common things. After three years of living this I know… My dizziness will get worse throughout the day. I will have vestibular migraines. I will have vertigo. I will stress out my eyes to the point that my vision will change. I also know I have a good possibility of having ocular migraines, vertigo to the point of getting nauseous, and exhausted to the point of passing out.
I guess I could classify my days into thee categories. A typical work day, a rest day and a day where I get to relax but still need to get some things done. I only describe my average work day in this article.
My typical work day starts at 5:15am with my SONIC BOOM.
Ok…Ok. It’s not that alarming. A sonic boom alarm clock is an alarm that has a small vibration device attached to it. When the alarm is triggered the device under my sheets (about the size of a hockey puck) vibrates and wakes me up. I no longer can wake up to sound so now I wake up to vibration. I actually find it a very soothing way to wake up. Then I hit the snooze button every 10 min for the next 40ish minutes before I actually get out of bed. I touch the walls and bed until I can turn on the light switch…I have tried to transverse my bedroom in the dark but that usually ends in me falling back onto the bed. Once I have light to show me gravity I am good to go. Typically my morning ritual is uneventful.
I commute about 50 km to work every day. It is mostly hi way travel and the speed limit is 110km/h. 18 years ago when I started this commute it took about 20-30 min. Now with more people on the road the same commute is anywhere from 30-60min on an average day. Since my vestibular issues started I learned that being able to reduce any stress in my day can give me a better chance of not having bad vertigo later in the day. So now if I have the time I have changed my route that will take me a little longer to drive but I can usually just set the cruise control and not have to deal with a bumper to bumper traffic jam.
I usually arrive at work early. I can grab a cup of coffee and get into work mode. Yes I still drink coffee…sue me. (Coffee can some times be triggers for people in my condition but I have to weigh the affects of coffee against my ability to deal with idiots…aham I mean lovely people on the road). I do have to limit my coffee…if I drink too much it will make my symptoms worse. I have also replaced most of my sweet drinks with water. I know my day will be busy weather I have a lot of work or not this is my time to get my mind for the work day. I will commonly drive 50-250km for work so mental preparation to manage my vestibular dysfunction is essential.
Typically by abut 10am my dizziness starts to show. Not in a big way just a little unsteady.
At lunch time many days I need to close my eyes for 10-20 min to give my balance system a little reset. Usually this means reclining in my truck with a sleep mask. I found early with my dizziness issues that if I didn’t take this kind of break I would have a ocular migraine and temporary have vision issues. I don’t eat a big meal. In the past I would have picked up some fast food but I had a better metabolism then and didn’t have to watch my weight. I have found that fast food does not agree with my balance issues. Now I usually have a bin of trail mix or meal bar for lunch.
After lunch I have to be very careful while driving. My dizziness generally gets worse as the day progresses. I can drive with slight dizziness but I will not drive if I have any signs of vertigo. Every time I get behind the wheel I test my balance system. I do a few shoulder checks to test for vertigo. If I feel any vertigo I say a prayer, recline my seat and relax with the sleep mask. Most of my life I have driven for my work. Averaged out over 30ish years at about 50k-75k per year I probably have a couple million kilometres of experience. In that time I have only had 3 accidents. *knocks on wood* One when I was young and stupid and two more minor collisions later in life…none since my issues with vestibular dysfunction. I have also always had precursors to let me know if a vertigo attack was imminent.
When I can go straight home after work I usually get home about 6pm and my dizziness is at its worst. Unfortunately my time with my wife is also my most scary and upsetting time of the day and I am about ready to just pass out. She always welcomes me in with open arms and usually has been working for hours to get supper ready. I don’t know how I could handle this time of the day without her. I get nestled into my lounge chair and rest my old bones. We watch tv together and chat about our day. I head for bed usually between 9-10 ready to reset my dizzy day. When my head hits the pillow I can’t sleep right away because my head will spin. I have vertigo every night before I can sleep. It usually does not last long many 5-15min. I am safe in my bed so I can just let my room rotate as I let the pressures of my day fade.
When I have a night out (I try to limit this to once a week) I am usually stuck in town between work and what ever event I am going to. I will grab a small meal and a 20min nap in preparation for staying up late. A good example is my dart night. I now play darts with a great group of people who are Deaf or hard of hearing. The group mostly communicates in ASL. I started learning ASL a little over a year ago so this is awesome practice for me…I need all the help I can get. I love playing darts. I have never played league before so I am still the Snot Nose Rookie but getting better. The biggest challenge is throwing sharp objects while dizzy and trying to sign with my hands at the same time. To be honest having vestibular dysfunction is kinda like playing darts with a moving target.
I hope this can show you that life can exist with vestibular dysfunction. Having this disease is about managing your symptoms. Some of us will be better at it than others. What works for me may not work for you. But you can know that you are not alone in your struggles and that someone else can relate to your condition. I know my conditions will change in the future… to be honest I fear the day I will no longer be able to drive and loose my mobility but I will deal with that when it comes. If it means moving into the city and learning a new way to earn money to support my family I will find a way to make it happen. My wish for you is to find more happy days than sad. Thanks for your time.