“What would you do if your dream of a totally pain- and symptom-free life,
came true?”
I’ve got so much to talk about when it comes to Cluster Headaches that I must
admit I’m a little stuck for words when it comes to a pain free life. It’s been
a long time since I’ve let my mind wander to such things…but ill give it a good
go!
When I think about it… these are the things I would do
Get Fit… if one day this illness disappeared I would
devote time to getting my body fit and healthy again. So many years of inactivity,
numerous drug therapies and surgeries have taken their toll. I used to love to run;
it was my stress free place. Running and swimming would become a huge part of
my pain free life. But this is me… inevitably I would break or strain a limb
soon enough!
Say Thankyou…wow, this could become my full time job.
There are so many people who deserve so much for what they have done for me and
with me in the last two decades. I would love to have the time and energy to
come up with amazing, creative and unusual ways to say thank you. From the Dr’s
and nurses who have made things easier along the way, friends and family who genuinely
came along for the ride with all their hearts, then the heart of my fight.. my
parents, my wife and my neurologist… the thank you’s would rain down on all of
these people!
Time for me to be mummy… I am so proud and lucky to have 18 kids
call me Aunty Katie… I love them all to bits. I would of course spend more fun
and quality time with them if I was pain free…they would get spoilt rotten. I
love being an aunty. Love it so so much. But I’m ready to be a mum now, I’ve
been ready for 15 years. As a couple we are so broody… if the pain went away
there would be no stopping us!
Go back to the Career… I am a health psychologist and social
worker by education and trade. Before I got sick the focus of my career was
exploring the way in which families function when one member of the family is chronically
ill. I know, I’m aware of the irony here!! I would love even more now to pick
this up again with my experience as a social worker and as the ill person! I’m
not sure where this work would take me now but I know I want to make a
difference. I care about being independent and for us as a couple to have
financial independence, but I don’t need to make a fortune to be happy.
If cluster headache still existed my campaign of education, information and
advocacy would continue. I would devote even more of myself to improving the
quality of life of people living with CH.
Travel… I want to see the world… not just the
countries I feel medically safe in, not just ones I think I could cope with the
flights, the climate, the food, the isolation.
There is a lot of thought put into the above dreams and goals.
However when I close my eyes and dream of a pain free life it can be
encapsulated in one moment. My wife and I got married on our 10th
anniversary, with just 2 witnesses. This was done for various reasons but it
upset both of us and a lot of other people that it wasn’t what we wanted.
When I close my eyes, I am standing in a field, with a view of the sea with
my wife next to me and our children in our arms. We are surrounded by our
friends, our family and others who we love. There are beautiful flowers in a
huge tepee tent with afternoon tea and a hog roast. There are bouncy castles
for the kids and the grownups! Our family is being blessed as a little unit and
our large amazing extended ‘family and support group’ are having a lovely day
as a thank you for their unwavering love and support
I know I don’t have a pain or illness free future. But it has been nice to
dream of travel and careers and a ‘normal’ life.
However I may be mad to think that that
perfect vision of the perfect moment, the thing I see when I close my eyes… it might
come true regardless… I thought CH had knocked the eternal optimist out of me...
maybe she’s still there! I will get my wedding day with my wonderful wife and
the children we dream of!
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