One of my first memories is talking with Mom one morning at the 2nd Hospital (Vibra). I was still loopy but was trying to figure out what happened and why I felt the way I did. I told her triumphantly that I knew we were on a train circling Portland. I was triumphant because the constant swaying I felt made no sense but I had imposed my powers of reason on it and come up with the train explanation. It didn’t occur to me that it was weird that Mom was standing by my bed (Dad was likely in the conference room he occasionally used as his “office”) nor that my room looked like it belonged in a hospital, not a train. I thought I was dreaming, anyway, so I wasn’t too concerned about details. Mommy set me straight and, concerned about my train scenario, told me to get off at the next station.
It’s been almost two years and I’m still trying to disembark. The only time the dizziness has improved was between the 2nd and 3rd Hospitals (Vibra and RIO). At Vibra the idea was to get me into a condition where I would not be bedridden so one of my first PT goals was to sit up on the side of the bed. Even in my dream-state, I anticipated these sessions with dread. I could see M (18)’s face as she and E (1) propped me up, and their faces were spinning at top speed. I thought we were on a merry-go-round like the one at the GWH playground with my legs dangling through the donut hole in the middle. Clearly, I’d be thrown off any moment, and this whole idea was a very bad one, indeed. I also dreamed my bed was a spinning circle, but since I was usually lying down in it I was not worried about being thrown off.
By the time I reached RIO I got used to sitting in my chair, and I did not see the spinning as a full rotation anymore – it was partial, maybe about a ¼ revolution, or just periodic wiggliness. It’s the same today – I still have lots of visual disturbances, which is sad for me since I had cherished high hopes for seeing normally and not being dizzy like this when I approached my 1st anniversary. I’m now approaching my 2nd, and apparently I have gotten used to feeling like this and can compensate better.
I take the Dizziness Handicap Inventory every month. It’s a pretty common test (just Google the name) and it’s used to measure the patient’s self-perceived level of dizziness. I recently Googled it to find the questions so I could make sure I wasn’t overstating my dizziness, and I really don’t think I am. FYI, there are three kinds of questions regarding the physical, functional and emotional impacts of dizziness, and you respond with answers like Never (0 points), Sometimes (2) or Always (4). The scores are added and the total goes up to 100, with higher numbers being dizzier. For the last 3 months my score has been 96. The only question I answer “no,” to is My problem makes me feel depressed.
Since I am a nerd and I miss making PowerPoint slides and fun charts, I made a picture for you (and this one won’t be the last). It’s time for Smart Art! (See the picture above.) I looked at an online version of the DHI at southhamptonhospital.org – their PDF is one of many.
I decided that since my score would have to drop by more than 40 points in order for my handicap to be downgraded to “Moderate,” that I am no longer going to worry about overstating my dizziness, at least for this test. I still find it difficult to tell new doctors about how I feel – I guess it’s like how parents tell little kids, “Use your words.” I use words and sound-effects. Mostly the sound-effects are like, Aaaah (screaming like you’re on a roller coaster). I also add in hand motions – flailing, panicky ones. I’m just trying to add some color to the DHI – it’s more fun that way.
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