Posts
I don't
miss trigeminal neuralgia. That may seem very much like stating the
obvious, but even though I've had what seems to be a successful MVD
i.e. no pain, no meds, there's not a day passes that I don't think
about it, even after 16 months pain free. I do of course have a
constant reminder in the slight tingling numbness on the left side of
my face. I was advised that it may take up to three years to go, if
at all. If it doesn't, it's so mild it won't be an issue. I'm already
thinking that it's permanent as the feeling hasn't changed since my
MVD.
It's only
just recently I realised how traumatic the whole experience was for
my wife (and the rest of my family) after she really opened up about
it the other week. She was a tower of strength throughout the worst
of my TN, but it's taken it's toll on her. I've asked the question
before, would I have been as strong as her if the roles were
reversed? I would like to think so, but when you consider that she
had to continually pick up the pieces for around eight years, I
honestly don't know if I could have shown the same resilience and
mental stamina. It's not only that she had to deal with me literally
screaming with the pain, in the aftermath, I would be so heavily
drugged that my contribution to any semblance of a normal family life
was non existent. The upside to this is that our relationship is
ferociously strong. It was strong before, but just seems better now.
My wife might offer a different view as she constantly talks about
trading me in for a newer model.
I still
find it difficult to talk really openly about TN even though I never
made any secret of the fact I had it. Talking about it has the
ability to bring the rawness of my experience rushing back and evoke
very strong emotions. That's perhaps the reason I keep this blog
going, although I don't post nearly as often as I did. I don't mean
to sound negative, because I'm not. I am leading a normal life, I
have another new granddaughter, that's three in total, I golf, go
holidays, enjoy family occasions etc. In fact, I am all the more
appreciative of my life now, having previously taken my good health
for granted.
I cannot
thank the members of the Living
with TN website enough. Again, I've said this before, there is a
wealth of ignorance among health professionals who deal with TN only
rarely. That's not a criticism, just a statement of fact. I was lucky
in that my GP was onto it in a flash (pun fully intended) and started
me on the medication which was to be my constant companion for the
next eight or so years. I was referred very quickly to a neurologist,
had the necessary MRI scans (four in total) and ultimately, my MVD.
That it took eight years to reach that point was down to my own
resistance to let anyone to poke around inside my head rather that sloppiness on the part of the NHS.
The
Living with TN website
allowed me very quickly to access the information I so desperately
needed. The empathy and support I received form fellow members was
outstanding. I reached a point where my doc said I knew more about
the condition than he did. You can read all the technical manuals,
research papers etc. you want, I did, but it's only by tapping into
other sufferers experience that you really begin to understand this
terrible affliction. The information, advice, but most of all empathy
and understanding which are part and parcel of this community gave me
the additional support I needed.
So onward
and upward dear friends. I'm currently planning a trip to New York
which will be in at the end of March, if not then, May. It's funny
that while I was working, all I wanted to do was lie on a beach or by
the pool, but now, every break we have, we try and tick something off
our bucket list. Maybe it's just an age thing. I'm thinking Japan and
China for next year.
My Granddaughters, Beth (2), Faye (5 going on 22) and Zoey (5 months)
