Sometimes
it feels like I should be writing this stuff in a diary rather than on this blog.
Some posts in particular, like this one, feel like they would sit better behind
the closed hasp of some Moleskine journal gifted a few Christmases ago.
But I don’t do diaries. Whatever writing I do must end up here or nowhere. Plus, my GBS posts over the past seven months have covered a fairly traumatic event in my life and I feel it’s good that there’s a breadcrumb trail of it somewhere out there in the online world.
In the height of it, and many times since, I have followed whatever
other breadcrumb trails I could find, to read about other people’s
experiences. Reddit, Medical Journals, Literary Works, you name it, I’ve followed
along the path.
Hang on, though. GBS, Ken? What’s
that then?
Sorry, if
you haven’t been following along (and that’s fine), I got a thing called Guillain-Barré
Syndrome back in early January, which landed me first in hospital and then in
an excellent residential rehab centre where I learned how to walk again. Since
then, I have intermittently posted about my experiences in this realm and this
is yet another of those posts. They are useful to me as a record, a sounding
board, a soapbox and whatever you’re having yourself.
A very brief recap: in early January, I fell down
on my front doorstep and found I couldn’t get back up. Shortly after, I was in hospital and the repair and recovery began.
Yeah, that’s probably enough recap.
Today marked seven months since I checked in to A&E and,
tomorrow, month eight begins. I reckon that it’s as good a time as any to set
down current thoughts and feelings on where I’m at and where I’m going, with as
little regard as possible for where I’ve been.
As far as the world is concerned, and with the notable
exception of some family and close friends, it’s all over. I am entirely well
again. I work full time, I am busy attending rehearsals for my brand new play,
I walk everywhere, I can skip across the road whenever a car threatens to run me
over (a surprisingly regular event), and I can sleep for Ireland. The walking
thing is only perfect when I concentrate quite hard on it, which I usually do.
When my mind wanders, the quality of my perambulation tends to wander a bit
too.
But, all in all… Hurray!
But here’s the thing that makes yet another post about this
as least partially worthwhile: The truth is I am not entirely well again. Not quite
yet. The residual things I am left with are a) peripheral neuropathy (paresthesia),
b) fatigue and c) … well, I’ll come to that.
The simplest way to explain Item a) is that it is a ‘pins
and needles’ or a ‘tingling’ sensation and I have this constantly in both hands
and in both feet. As a person who enjoys words and using them, I can say, with
some authority, that neither of these descriptions cover the experience. ‘Pins
and needles’ sounds easy and ‘tingling’ almost sounds like fun, neither of which
are true. Searching my medium-range vocabulary, I find that I literally don’t
have the words to describe exactly what goes on, 24/7, in my hands and feet
but, as you might expect, I will try.
My feet, at this moment, feel like two blocks of wood that
are also hugely over-sensitive. I know that this feels like a contradiction in
terms, and that’s what I mean about language. But when the protective sheath gets
eaten away from your nerves, this is the kind of shit that happens. My hands
have a constant sensation that is not quite pins and needles but that does give
you some idea of the sensation. It feels more like a low-to-medium sized
electrical current is constantly trickling through my fingers and palms. As I
walk around, I find myself slapping my fingers on my palms in a sort of a ‘one
hand clapping’ gesture. This is a bit like scratching an itch; it doesn’t make
anything go away but it’s something to do. On medical advice, I don’t take any
drugs for this paresthesia. It is most likely a sort of live confirmation that
my nerves are still busy repairing themselves (at a rate of one millimetre per
day) and the best thing I can apparently do is just let them get on with it.
On top of everything else this ‘tingling’, ‘buzzing’…,
whatever, is a sizeable distraction. It takes my mind away from the work I have
to do and clouds my mind when I’m trying to figure stuff out or recall stuff.
It’s like a voice in my head going ‘nah-nah-nah-nah-nah-nah-nah’ all the time.
A nuisance, a distraction. Manageable, yes, but also a pain in the ass.
All of this feeds into Item b). Managing, repressing,
dealing with the ‘tingle’ takes resources and the expending of those resources
makes me tired. I get weary. Fatigue is a known factor in GBS recovery but the
idea that it’s the tingle that actually wears one out is mostly my own
invention. I get through my day pretty darned well but, when the down time
comes, it is very down. I can sit in a chair for hours on end where before I think
I would have had much more left in the tank. Thankfully, I sleep very well and that
is why the above 24/7 comment isn’t really right. When I’m sleeping, I get a
break from the tingles. That is a gift if ever there was one.
All of which feeds into Item c), the trickiest one to discuss.
Irritability. I am grumpier than I was before. More inclined to snap at someone
or say something mean that I previously would not have said. Again, I think it’s
the seven months of unabating ‘tingling’. Poor quality motorists, people who
impede my way on the street, unwelcome developments in work; all of these have
me grumbling and swearing to myself like some poxy old Scrooge before the ghosts
arrived. I can almost step back and see myself doing this and I can almost
shake my head in disappointed disbelief. But still, the irritability persists
and pokes out at unexpected and uncontrolled moments.
I know, from my reading and from my talks with other sufferers,
that there is a well-documented incidence of post trauma stress with GBS. I
worry that my tendency towards suggestibility might allow me to convince myself
that I might have a bit of that. But I really don’t want to go down the route of
welcoming phantom possibilities into my head. Most PTSD in GBS is documented
in people who required mechanical ventilation in their treatment and I did not
need that because I was diagnosed and treated in good time. The threat of it
hung over early proceedings a bit and the overall experience was certainly a
traumatic experience to someone who had not been in a hospital at any point in
their adulthood. But I don’t want to turn a certain new-found edginess into
PTSD by dint of my reading and my over-active imagination.
What I want to do is get better and I think I’m doing as
well as I can with that. The lack of any improvement on the peripheral neuropathy
front, after seven long months, is admittedly frustrating and it wears me down
a bit. But I know that patience is the key requirement in recovering from GBS.
My Neurologist said I would be well before summer was over but would not be
fully recovered until closer to Christmas. So far, I have beaten his predictions
by a long chalk and I’d like to keep on doing that.
My Mum, back in the day, was an enthusiastic utiliser of faith
healing and all manner of old fashioned remedies. Although I don’t subscribe to
any of that, I do see faith healing as just another name for something I do
have some time for. I would call that positive healing. I think, with certain medical conditions, it may be possible to make
yourself considerably better by approaching whatever ails you with a head-on,
proactive, and almost slightly belligerent attitude. I try to stand up to the relatively
minor residuals from my health issue with as happy and forward-thinking an attitude
as I can muster.
I’m doing great and actively getting better. I can cope with
these niggles and keep on truckin’ and one day soon, with a little good fortune,
I will be completely well again. I try to run my days like this and I think it’s
worked well for me thus far.
But rather perversely - and so much of this thing seems to
run counter to logic - I also find some
peace in occasionally saying out loud that I’m not 100% healed yet and that I
need to make allowances for that sometimes.
So, month eight, here you come. What things do you have in
store for me?
Slightly better ones, I hope.
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