"Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow".
I first fell ill July 2014. I was a single Mom, with 2 kiddos. In the process of moving, a lot of stressors personally and professionally at the time. I started feeling sick around Friday. We were moving on Saturday. Just across the street. I felt fatigued, achy, weak, and just like I was coming down with something, stomach didn’t feel well. I chalked it up to stress. And I just told myself I could rest once we got moved. Saturday came and all I could was delegate. By Sunday I was on the couch. I was so weak and felt so sick. Woke up Monday and was worse. I made my way to the bathroom with the focus that had to get to work. I saw myself in the mirror and was taken aback at what I saw. My upper and lower eyelids were bright red, and my eyes were sunken in. I had deep dark circles under my eyes. I looked and felt as though I had been poisoned or drugged. I was feeling so exhausted, not all there…brain fog I guess, not real stabile on my feet, just weak.
I got ready and headed out the door for work. I ran into my neighbor walking her dog and when I was talking to her, I was slurring a little. I apologized and told her I wasn’t awake yet. Said our goodbyes and I began driving to work. About 30-minute drive. Halfway there I was struggling to find the lines in the road. Not sure how I did it, and don’t remember it, but I made it to the nearest walk-in. By that time, I was falling to left when I was trying to walk.
They called for an ambulance thinking I was having a stroke. After being assessed at the ER, they did an MRI looking for Stroke or sudden onset of MS. Turns out the Vestibular Nerve to my brain (Not the one connected to your ear, there are two branches), was swollen. They couldn’t determine a cause and said it must have been a virus. I had to go every day for 4 days and have a steroid IV to get the swelling down. And sent home with several meds.
They said once the swelling goes down, I should recover. That never happened. I didn’t recover. I ended up in PT for several months working on my balance and strength. I was having cognitive issues as well. I would get sick when I rolled over in bed, had to hold myself up against the wall in the shower, couldn’t drive or work. I was having panic attacks from all of the weird symptoms; I was sure I was dying. The meds made me worse and eventually I completely quit them all. They had me on something for every symptom.
Come November of 2014 I was given the go ahead to go back to work. December 1st, I started a new job. I may have taken on too much too soon. I accepted an HR Coordinator position overseeing 4 dealerships. Starting late Summer, I started experiencing some issues. During the last several months I had experienced 2 tragedies in my family. One being the loss of my Father. My office was located on the second floor of the main dealership. It started in my legs. I began struggling getting up those stairs. I was fatigued beyond the normal. And again, my stomach was not feeling real great. Then at the End of October I had an incident sitting at my desk. I suddenly became flushed (I was not stressed. Was actually having a mellow day) my heart started racing, I was shaky, lightheaded and feared I was going to pass out. I made it downstairs to main office and let them know I was having some medical issues. I was driven down the street to the Walkin.
They could not figure out what happened. But I never returned to that job. I was back to feeling weak and unsteady. Cognitive issues. Panic attacks. Anxiety. Sleeplessness. But exhausted. Stomach was always uneasy. My head was a mess. In February 2015 I was sent to Seattle to see a neurologist where I was diagnosed with Vestibular Migraines.
Through the next 7 years I have had moments in life where I felt well enough to return to work part time, but that would always land me right back to where I was. All the symptoms returning. And I would have to resign. I have gone long periods of time unable to drive due to feeling like my eyes and head were not in sync. I went through Vestibular PT many times only to get much worse.
Where I am at today, I haven’t driven in two years. I am on disability making a quarter of the income I was making when working. I have been in the ER many times due weird symptoms arising and not knowing what was happening. And every time being told they can’t find anything wrong. I am still fighting my eyes. Feeling woozy at times, fatigue, body aches (I also have Fibromyalgia), anxiety, depression, stomach issues. I recently underwent neck surgery and had daily Vertigo for over 3 months. Just in last two weeks I’ve felt somewhat ok. Back to my normal symptoms.
I have changed up my diet, take supplements, try to move as much as I can. I speak to a therapist. And I try to stay as positive as I can.
The biggest struggle, as I’m sure everyone has experienced, is the lack of knowledge and understanding from doctors. I find myself educating them. Which is very frustrating and defeating. Thats the difficulty with this disease. For me, I seem to somewhat recover, start anew and get hit with it again. Thats been my rollercoaster for the last 8 years. I am better than I was 8 years ago. For that, I am thankful.
I hope someday the Vestibular system will be widely understood by doctors, that a diagnosis will come much quicker, and the chance of a full recovery will be the outcome. I will try to do my part.