Pain free is
something that most people take for granted. I think what a lot of people
don’t understand about Cluster headaches is that it might be the worse pain to
man, acknowledged as more painful than childbirth. But we don’t just do this
once or twice like people go through labour. We do this for hours and days,
weeks, months and years at a time.
It doesn’t stop… well it does, sometimes, but for those of
us who are chronic sufferers the pain free moments are few and far between. I
have been chronic for a long time, so can only write this from my point of
view.
Chronic means that it doesn’t stop, compared to those with
episodic CH where they have periods of illness and periods of remission.
For me, the pain and
the attacks that I feel are the norm. They are horrific, the pain is
unbearable, but despite this I don’t measure my life by the number of attacks I
have each day. When I sit down and work out how much of my life I spend in pain,
it shocks and upsets me; maybe that’s why I ignore it!
I measure my life by
the pain free moments. Those brief moments when the pain is gone or manageable…those
even rarer moments when you for a brief amount of time forget that you are ill.
I have a jar in my front room. Its full on scraps of paper. On each piece of
paper is a good memory from this year. We are only 6 months into the year and it’s
looking good so far … that’s what I want to show my doctor when he asks how successful
my serial multiple cranial nerve blocks were when I see him in September. I want to tell him he owes me the money for a
bigger Jar!!!
But here comes the ironic bit.
After successful treatment this month, I now have 10-12 pain
controlled hours during the day…bliss… space to live… actually be alive. But then
at 9:45pm every day they hit me like a ton of bricks. I have so many coping
strategies to cope with the pain, I wouldn’t have survived without them. But last
night all that was useless. I sobbed through the whole thing, desperately telling
my wife how ungrateful I am that I’m getting so much pain free time but I’m so
angry and upset when it still hits. This is the only downside to having a
regular pattern of good times… they make the bad times even worse. When life is
just a case of bouncing from one attack to the other, which I have done for
months at a time, you get used to it… its hell but you get used to it. When you
see a little daylight between attacks though, the pain seems to hurt just that
little bit more when it hits.
Life is valued by the
good bits… the pain free moments…. The fun and adventures that I get to
have with the people I love. I don’t count the attacks; these good moments are
the true indicators of how my life is going.
I’m looking forward to buying a bigger jar!
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