Today Rob is seeing a nephrologist because some recent tests came back with some questionable results and the doctor referred him to a specialist. This latest turn of events has had me more than a little distracted and somewhat reflective. I think about where we are and where we’ve been while also fighting the urge to think about where we might be heading.
We’ve come so far. I forget sometimes how much we’ve accomplished. You see, back in 2006 I woke up and hit a wall, literally. I was trying to walk the three or so yards from the bed to the bathroom and I walked into the wall instead. I managed to get into the bathroom with difficulty and ended up back in the bed, unable to move.
Thus began a series of doctor appointments and many tests. I saw my regular practitioner, then an otolaryngologist, a specialist, a neurologist, a physical therapist, another neurologist, and finally ended up at Emory Dizziness and Balance Clinic where I was finally diagnosed with cervical vertigo. Basically, I have permanent nerve damage so that my brain doesn’t get any signals saying I am not falling.
Imagine feeling like you are falling all of the time. You know that weird experience you have sometimes when you’re falling asleep and you accidentally jerk awake because you feel like you’re falling? You know how you feel when you try to walk on a rocking boat or even how you feel when you get off a boat and try to walk on solid ground? That’s my reality all of the time. When I’m standing, sitting, lying down, my world never feels like it stops. It just keeps moving, sometimes as though it is dropping out from beneath me, other times a gentle wave drifting me along.
It never stops. Ever.
In 2007, I was using a walker to get around and it occurred to me the other day that it’s been seven years since we put it in the attic. Every day I don’t fall is a good one. Every day I don’t need my walker is a great one.
And it’s amazing how supportive Rob has been throughout it all. And my mother and my children who have been so sympathetic. I mean, I’m so fortunate to have so many people in my life who will never, ever give up on me. They are all the reason I have worked so hard to be strong and not give up. For some people, not having any balance would be a reason to not do anything. And don’t get me wrong, there are days I simply have no choice. I can go from being just fine with almost anything and everything to times when reading more than a page or two of text makes me nauseous to full blown nystagmus. I have to take each day a day at a time. That may be why I push myself so hard on days when I can do anything.
And this is why, the past few weeks of doing so little is indicative of where my head is right now. I get up and I exercise. I have breakfast and I think about the things I should do and could do and then I find myself going to bed wondering if tomorrow I’ll do better. But I’ve been down a similar road before, waiting for answers because it’s not the diagnosis that’s scary (albeit, some diagnoses are scary), it’s the not knowing. Once you know what you’re facing, you can use that knowledge to move forward. Until then, is it any wonder I have been feeling so stuck?