Happy New Year!
Today I am going to share a very personally experience that speaks directly to focus and language. It will also touch on how someone else showed me that they care, this type of caring can change a person’s life.
10 years ago I was suffering with Vertigo on a daily basis that was so bad I was out of work for almost a month and on the days I could get out of bed I had to have someone else drive me to work and when rooming pt’s I had to drag one finger along the wall so that I knew I was still standing upright. Every moment of my day was affected by this Vertigo and every step I took was the hardest thing I had done. I was feeling depressed and I was living in a very dark place. I had gone from doing whatever I wanted to nothing at all. I went from 2 trips a day to the gym, one before work and one after, to barely able to get out of bed most days.
I had a CT, 2 MRI’s, a Holter Monitor and a Stress test. I saw my PCP, was in the ER on multiple occasions, saw neurology for work up for MS, cardiology for work up for heart condition, hearing and balance center, and ENT. I was sent to the audiologist at my ENT office where I had Dix Hallpike and Epley Maneuver done every week for 6 weeks. I had a VNG, an ENG, Head Impulse test, Romberg test, Rotation test, VEMP test and a hearing test. I had blood work drawn for a whole menagerie of issues. I was started on several medications. I was also given the diet restrictions for Meniere’s just to see if it would help. At the end of all of this, it took several months, I still did not have an answer as to what was causing my Vertigo. My ENT called me and said ‘We have one more option, but it is a last ditch effort and I am not sure you will get anything out it. ‘ I was desperate so I asked for the referral and was sent to an occupation rehabilitation center.
Here I was 30 years and sure I was going to have to go on disability because I knew the office I worked for (as well as any others) could not continue to keep me on staff when I never knew if I would be able to work or if I managed to get there if I would be able to work the whole day.
When I got to the occupation therapist office I was taken back to the room and MORE tests. I again had the Dix-Hallpike as well as Fukuda-Unterberger test, Posturography. I cried for this entire time. As before, all the test just made me feel worse, more dizzy and more sick to my stomach. Still no answers.
After about 30 minutes the testing was done and the therapist had the results in hand. She sat me down and said, as you know you have a lot of testing and everything that can be ruled out by testing has been. We are left with giving a diagnosis that we cannot prove because there is no test for it. My heart sank.
The therapist said, It would appear you have some type of nerve damage and your brain is not receiving the correct signal from your ear. This is compounded by the fact that your brain also is receiving a different message from your eyes then from your ears. She said you most likely have a form of labyrinthitis or Vestibular neurontitis, both of which should have cleared on their own but for some pt’s the inflammation leave lasting damage to nerves. She smiled and said, it really does not matter the cause because we can fix this. She then handed me a small cube, about 1 in by 2 in, put it in my hand and closed my fingers around it. She said ‘This is the size of your problem. You can handle this, right?’ I cried, I cried the whole visit, but I cried hardest in this moment. She then gave me the first set of exercises to re-train my brain and went over realistic expectations for both short and long term. She advised me I would continue to suffer with this for the rest of my life, but assured me that the exercises would always help me re-train my brain when it got lazy and started listening to the incorrect signals again. She let me start without more medication but told me that if I could not get the anxiety under control we would have to talk about medication because the anxiety made everything I was feeling more intense, she knew I did not want to be on yet another medication.
This small statement and visual representation changed my life! I had a plan and someone who believed in me, someone to help me believe in me.
2 weeks later when I went for my next appointment, I drove myself. We talked about the next step of exercises as well as medications which would help during episodes of dizziness that I would inevitably have our the rest of my life. We decided I did not need daily medication for anxiety. We talked about management of those episodes as well as importance of how I speak to myself during the episodes of dizziness.
Today, some days are hard… I have episodes and just about the time I think ‘hummmm… I haven’t had an issues maybe this over for me’, I have an episode and have to go back to my medications and exercises and I have to fight my way back… every time a small part of wants to give up, but I don’t because I am worth more than that.
I am doing more and more things that make me feel uneasy and cause episodic ‘flares’ but I am also talking myself through them and overcoming them. It takes time to build up the courage but each new thing I have done I have conquered. Someday I am sure I will find something that my limitation will not allow me to do but until then, baby steps but keep moving forward. And after I find that thing I cannot do? Baby steps and keeping moving forward. It will be a side step not a step backwards.
So speak kindly to yourself, hear the kind words other say to you and repeat them back. Focus on what you can control!