Positive Reports from the GBS Front

There’s a sizable part of the me that doesn’t want to return these posts to the Guillain-Barré subject ever again.

I am cultivating a sort of a ‘Move On/Get Over It’ mentality about it all. But it’s not entirely as straightforward as all that. I tell myself that I owe it to the narrative to update it a little as I go.

What do I mean by that? Well, when I was first diagnosed, four months ago this week, I started to hunt through the internet for other people’s experiences of what I was about to experience. It was helpful and unhelpful, all at the same time. I think how the people who come after may do the same and they may eventually stumble on to me and my own posts on the subject. And if those posts of mine were to just stop at three months out, doing good, would that not be a cop out and a lack of respect for those who come after? Along the way, I have benefited greatly from hearing, first-hand, the experiences of others. It is statistically highly unusual that I would have two lovely people in my immediate circle who have gone through what I have gone through.

So, in summary, here I am, updating again.

Four months out, four months in, take your pick and I am doing great.

Great.

Except it’s not entirely that straightforward and not entirely that simple and that’s why I think it might be worth revisiting the subject yet again, even if you are totally fed up of it.

So, how am I really?

Okay.

In almost every respect I feel that I am done with Guillain-Barré Syndrome and it is done with me. I go to work every day and I do well. I walk everywhere with a good steady gait and can manoeuvre around and through the everyday obstacles of the town very well. My reflexes have come back and I can once again feel the resonance of a tuning fork on any part of my body that you might care to place one. My consultant doesn’t need to see me anymore. If you meet me on the street, I don’t think you’d know that anything had happened to me, which is very pleasing indeed.

But, for the readers who may come afterward, experiencing the same stuff, I have to say that there are still some unavoidable residuals. The main thing that I am currently left with is what the fancy-ass people would call ‘Peripheral Neuropathy.’ This persists in both my hands and my feet and, sometimes I fancy but can’t be sure, in the tip of my nose. In my case this stuff presents as a constant numbness, prickling, and tingling in these areas as well as a sensitivity to touch and a rather contradictory feeling that my hands and feet are bound up in some kind of invisible cloth.

With all of that comes an element of fatigue and distraction that is much harder to describe and nail down. In truth, it’s harder to know if that part is real or not – a real part of this journey – or whether it is just a part of the normal course of getting older. This self-doubt is one of the hardest parts of all to navigate. If I get worn out, if I stumble momentarily, if I forget obvious stuff, am I just playing a game with myself, pretending to still be a bit sick, for sympathy or something. I know in my heart that’s not the case but the mind plays its tricks… or, at least, mine does.

But the nerve pain, as described above, is the main thing. And, because I got this little gift as part of my GBS, there is an increased chance that it will all go away over time. They say it often eases and fades over months and then, one day, it is gone. One friend who has travelled the same road reminded me that the symbol of the GBS Society is a Turtle. Slow progress and patience are the watchwords of these latter stages. They say that nerves regenerate at 1mm per day so, inch-by-inch (in old money) the inside of me is getting better every day.

But to those who follow behind and who may find these posts here, I will say that it doesn’t always feel like that.

Whatever repairs are going on inside of me, they are not manifesting themselves in any notable improvement yet. The tingling/buzzing/numbness/pain is unaltered to date and, on some days, I feel like my age (62) might go against me in this and I may ultimately be left with some lifetime residuals from this adventure.

And, you know what? If that turns out to be the case then so be it. I can do everything I need to do. I can get through my days and if I’m a bit more weary than usual at the end of them then so what? This will improve… or maybe there’s a small chance it will not. Either way, I can manage it and live with it and enjoy life with it.

So, in summary, I am happy with where I am. I certainly feel some of that rather clichéd increase in appreciation for the life and the health I have, and I also feel some increased empathy for those souls whose lives are so, so much harder than mine.

So that’s the update. Ask me on the street how I am and I’ll tell you I’m fine, it’s over, I'm done with it.

Ask me here and maybe I’ll tell you that little bit more.