So, the kids and I got up and ate breakfast, and I sat on the couch and folded the latest load of laundry. Lily's upstairs cleaning her pigsty of a room now, Eli is playing in his room, and I'm finally getting the chance to write this.
Okay, so let me explain the title of this post...
By "jiggly eyes," I'm referring to Nystagmus. Nystagmus is a condition in which the nerve pathways that control eye movement are disrupted. The Multiple Sclerosis Society describes it this way: "Nystagmus is the name for an uncontrolled movement of the eyes. They can move in any direction: side to side, around or up and down. Many people with MS who have nystagmus don’t realise they have it, as the movement has little or no effect on their vision. It’s often something doctors will pick up on when they’re testing eye movements. However, some people do notice a significant effect on their vision. Objects may seem to move back and forth, to jerk or to wiggle. This is known as oscillopsia. As with other MS-related eye problems, visual problems caused by nystagmus can vary. For example, some people notice their vision can get worse when they are stressed, tired or hot."
This past week, it was more noticeable for me than it has been in the past. I was spending a lot of time on a challenging project at work, which meant hours of working on a computer. Add that to the humidity trigger, and the jiggly eyes were pretty bothersome by Tuesday, to the point of triggering episodes of vertigo. It happened when I was scrolling on my phone, too. Even something as simple as the new movement of the buttons after I updated my iPhone - that throws me off, too.
Along with that little fun bit, I've also had some hearing issues lately - certain loud noises sound "buzzy" in my ears, and make me want to back away from them, because it's uncomfortable in my ears. I've also noticed dizziness and vertigo when I turn my head suddenly. Neuro sent me to my primary doc last week, who put me on a steroid nasal spray to try to settle down the inflammation she saw in my ears...something called "Eustachian Tube Dysfunction." Apparently, my ear drums were "bulging outward," but there weren't any obvious signs of infection. So, I tried the spray. It didn't help. She told me to take a motion sickness medicine and try this weird thing called the Epley Maneuver, but I haven't done either. I'm supposed to call her on Monday so she can refer me to an ENT doc. She said it could be something like Meniere's Disease, which the Mayo Clinic defines as "a disorder of the inner ear that causes episodes in which you feel as if you're spinning (vertigo), and you have fluctuating hearing loss with a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear."
Honestly, I'm a little tired of medical appointments and tests and urgent care centers. I know, from talking to my neuro and other friends who have been dealing with this MS craziness for much longer, that this part will settle down eventually, once we figure out what's "normal" for me, and what's not. Of course, it is always changing with this disease...literally, from one hour to the next. But I'm still holding out hope that I'll settle into a rhythm of symptom management eventually.
We did have a great day yesterday, though, and I'm feeling good about that work project I referenced earlier. The weather was gorgeous yesterday, so we took the kids outside and let them burn off some energy and build up some Vitamin D stores. Harley went outside with us, too, and burned off some of that puppy energy. She's getting better at her training, and learning how to come when she's called, so it's getting easier to take her outside with us, off-leash.
Hubby and I got some laundry done and I did some house cleaning. I had a GREAT workout in the morning with my amazing Camp Gladiator tribe; their support of me has been incredible, and it's what keeps me showing up to workouts when I really just want to lay in bed. They are good for my soul.
Well, I have to go feed the kids a snack, so I'll finish out this post with a positive thought, taken from a video I posted to my Facebook page this week (link below): "They say failure is not an option. But failure should be an option, because you fail and then you get up. Then you fail again, and you get up. And that's what makes humans strong." - Muniba Mazari, the Iron Lady of Pakistan
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