Resurfacing certainly isn't what it used to be. The past few days have been especially difficult. The reason? Rain. I actually like rain-but now I'm unable to walk with the slightest degree of balance. So-I try, but I stop before I fall over. Lovely way to spend a life, isn't it?
Everyone knows the news-everyone who lives on this planet and has the internet, that is. And that seems to be a large part of the problem. With all the shootings in the US, and the stabbings here in the UK, it seems like there will never be any kind of peace in my lifetime-or yours. So I'm going to go on a news fast before I throw something. I'll let you know how long that lasts (probably not very long. I seem to need to know what's going on in the world, no matter how utterly shitty it is).
I didn't write before-I got some disastrous news that really disabled me for awhile. I was devastated to go to see Dr N, the neurologist, who told me that all the tests that were done in February showed conclusively that the vestibular damage wasn't just vestibular damage. The vestibular system is completely gone; there is no reaction to stimuli whatsoever. And, to make matters (and my life) even worse, all the tests showed that there is irreversible and incurable damage to the cerebellum (which is why I seem to have hit the wall when it comes to making any kind of progress). And-worse-it's progressive. And that was devastating.
The point is that any kind of recovery isn't possible. I asked whether I would end up in a wheelchair. The doc said that the progression seems to be moderate, so he doesn't think so. All we can do is monitor the progress (or, rather, regress) once a year and see how quickly I'm deteriorating. I wanted to vomit.
Well, no, I didn't vomit. And I had a severe episode of BPPV, which made things worse, so I went along to the hospital (without falling over. Miracles do happen), and I was put into "the chair". The chair looks like a medieval torture device. You get strapped into a large chair, and I do mean strapped, so you can't move. Then a helmet is put on your head; it has electrodes that connect to a series of machines and monitors so the technician can see what is happening in your head-as you get turned upside down. By the way, you're blindfolded. An eyepiece keeps you from seeing anything. You need to keep your eyes wide open (in the dark), and you're turned upside down in one direction-and kept there for a couple of minutes-then turned upside down in the other direction. Good thing I had nothing to eat or drink before the test.
The object of the treatment is to get all the crystals in the inner ears back where they belong. The migration is what causes the BPPV-and I was told that it would keep returning. Kind of like acid reflux. It doesn't ever go away permanently. Reflux, or flu, or whatever gets you very p***ed off because it just doesn't want to go away and stay away...
So that's why I couldn't bring myself to write-until I was able to get some kind of perspective. And-I've got my vestibular exercises, which I'm doing a lot more often now, as well as my anatomical pictures that have pride of place on my wall. It really does look like a doctor's office!
To me, this means that I just have to work harder, and accept that it might take longer for me to have some kind of progress in the right direction.
It's taken me twelve years to get to this point-longer than I thought was possible, which is why I've had periods of depression, wondering if I will ever get better. But I always pick myself up again, use Arnica on the bruises, and keep going. Twelve years ago I couldn't walk, so I'm really lucky. Even Dr N says that it's due to the refusal to give up, the absolute refusal to quit, and the stubborn determination not ever to end up completely incapacitated.
Even Professor Google is rather less than optimistic-the sites I've gone onto basically say that I'm lucky to have gotten this far. But Google doesn't know everything. Google doesn't know me.
If anyone you know is suffering from anything I've talked about, please tell them that there is always something they can do-just don't ever give up, don't quit, don't walk (or hobble) away.
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