The Guillain-Barre Syndrome Group I belong to on Facebook has been more active recently. Or maybe I’m just finally checking something other than my blog’s Facebook page (you guys are all I need!).
Point being, I’ve seen several posts lately and have commented on a couple.
This means I’ve also reviewed some of the other comments, and I’ve been astonished at what I read. I mean, I’m well aware that others have it worse than I do in many, many categories of life. But now it was far more in-my-face(book).
There are people who are years out of the hospital and still can’t walk at all or have trouble walking unassisted. One post was a woman who still has no feeling on half of her face. One comment on that post was a lady who has no sensation in her body. She has full motor function, but they’re pretty sure she’s just not going to feel sensation (other than pressure) for good.
By the time I was out of the hospital, I had full motor function. No endurance, and I had to walk with crutches, but still… Two months after that, I was walking unassisted. I still had terrible nerve pain and severe fatigue. But yeah.
Some people essentially had heart attacks. It commonly affects the lungs, so the heart is only a minor stretch. But the worst was a woman whose son has GBS and is being pronounced brain dead. Apparently, sometimes it can mimic brain death (I have absolutely no idea how, given that my brain wouldn’t shut up), so people were telling her not to let the doctors pull the plug.
So apparently I need to remember to be thankful about what I was able to get back.
Let me be clear, this in no way negates all the bitching I do about the after effects. Things like fatigue and (far less commonly these days) nerve pain are still awful. The dude who cried because he had no shoes until he met a man with no feet is still shoeless. Which sucks and puts him at a disadvantage. He just now has more perspective of his place on the Crappy Things Spectrum.
You might wonder how the disease could be so different for so many people. A lot of it, unfortunately, is timing. If your onset is quick and you have a good doctor, it’ll get diagnosed right away and your treatment begins shortly thereafter.
If your onset is slower/less severe/treated by a doctor that doesn’t think of GBS, you may not get diagnosed for weeks or even months. The treatments need to be given within a month for any real efficacy.
But some of this is also just bad luck for people. Their bodies don’t respond as well to the treatments, due to other health problems, age or just the general malevolent streak that life has.
My onset was quick and severe. I deteriorated quickly in the ER, so they had to stop suggesting it was the flu. And when they started the treatment, I was pretty much at my worst. In other words, when they cleaned out my plasma (where the stuff — to use the technical term — hangs out), they got pretty much everything.
So I guess you could say I got the lucky end of an unlucky spectrum. Which I’ll try to remember the next time I don’t have the energy to do something fun.
What’s something annoying that you forget to be grateful for? (Yes, children count.)