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| The changing faces of me and my closest comrades in arms.... |
“From quiet houses and
first beginnings,
out to the undiscovered
ends,
there is nothing worth
the wear of winning,
but laughter and the
love of friends.”
-
Hilaire
Belloc
Today’s date is 10th September and the season is
very similar to 3 years ago when I fell ill. The sun is bright in the sky
giving a false claim to warmth and the nights full of stars and low
temperatures. The same celebrations are taking place.
Two nights before I fell ill I spent a very enjoyable night
with my family watching fireworks and a bonfire procession through the streets
of Burgess Hill. I have attended every year since but watched from the glow of
a fire pit in a garden rather than amongst the crowds. Watching the explosion
of colours I am reminded that life can be very much like a firework display. We
enter into things with great gusto and shine bright only too quickly our
expectations can fall to the earth in darkness. This all sounds very dramatic
and dismal but it is far from the truth. Whilst exploding we can fill the
surrounding area with colour and brightness causing others to draw breath and
ooh and ahh in wonder. This is how I view the last 3 years of my life.
I have accomplished things that I never thought I could and
have found the directions I have taken were never on my life map before.
Imagine a road that has the same view day in and day out. It is a good road but
like the M1, straight, no change in view and very long. This was my old life
and enjoyed it. I was motivated and happy with my life. Then BAM! The 23
September 2010 arrived and suddenly there was no road at all. I had no
direction and was wondering around in circles without the help of a map or
Satnav. This probably lasted a few months. It was not all bad as I was thinnest
I had been in years and could actually fit into a size 10. Always a silver
lining. Then with the help of my nearest and dearest I started to regain
confidence and focused on the positives that I was finding as a result of having
an incurable condition.
Have you heard of the saying ”like ships that pass in the
night”? That seemed to be my life’s rule. I was always with my family and
friends as well as colleagues but never really appreciated that it wasn’t
quality time more of going through the process as if on auto pilot. I never
took a moment to stand back, peruse the scene and digest what was happening in
front of me. I now take time, take a mental snapshot and put them in mind’s
memory scrapbook and take them out when I need reminding of what is important. From,
laughing with Mark over really silly things to watching the children trying to
catch the dogs in the snow. They normally involve smiling faces and filled
hearts. Within the scrapbook there are one or two very poignant sad moments
that have also shaped me into the person I am today.
Those of you who have followed this blog for the past 2 and a
half years will know that it has been a bit of a roller coaster that has thrown
in a few unexpected twists and turns when I have least expected it. A curveball
was thrown to me only last week when complacency was thrown out of the window
at high speed. An attack to rival all former attacks. After my initial surprise
and concern I realised that I need to continue being on my toes.
One of those
twists was the loss of a dear friend. His passing definitely left a legacy
within my little family and we know how fragile and precious life is. Even now
I have to wave at the Brighton Eye and The View restaurant everytime we drive
by. Our family’s very own personal tribute to someone who came into our lives
and taken far too early. Through these moments captured in time I draw strength
of character. When feeling down or wanting a desperately needed duvet day the
letters KTF pop into mind to give me the kick up the bum I need. I even have
them tattooed on my finger as a constant tribute and reminder.
Friends have come and gone and some re-entered my life. The
strange thing with a long term illness is that longevity can result in a lack
of understanding, Our family life and what we have to do can be difficult for
even the closest of our friends and relatives. We do not expect people to
understand or approve of all of our decisions and to be honest they haven’t.
Acceptance is another problem .I remember going to a party about 18 months ago.
I was dressed in my finery and thought that I looked ok for once. On my
entrance with Mark pushing my chariot there was a silent collective gasp. It
became apparent very quickly that the other guests had been told I was ok and
that all was fine. I was shocked by the reaction. It was because others who
could not accept what has happened had portrayed a picture that wasn’t entirely
true. Another learning curve. As in the infamous statement “you can’t handle
the truth”. This happens a lot. Mark and my parents have had to accept what has
happened. Funny really as they are the most effected and could be forgiven for
putting on rose tinted glasses.
So where am I three years on? Regarding HUVS, we may have at
long last found a management plan that my make my life a little easier. There
is no magic cure but the future is looking brighter. I am still a medical
conundrum and have multiple attempts at treatment. I still balance between
normality and emergency never knowing where I will fall during the day. The
attacks seem to be strengthening but not as often so, one hand giveth whilst
the other taketh away. My body is battle
scarred and tired but my spirit remains strong refusing to bend in the storms
of Vasculitis.
Even though in a chair, and looking very different, I seem to
have found confidence in my new skin. Maybe the idea that I am lucky to be here
helps me push through barriers that would have once held me back.
And what of the future? My first priority are to my family
and friends and always will be. The children have had to adjust with little
support. With this in mind Jacob and I are in the process of setting up a
support webpage for children with parents suffering from Vasculitis. A place
they can chat to each other, gain support and understand they are not on their
own. I feel great pride when I think that this is something that Jacob and I
are doing together. He was in denial for a long time so this is huge step
forward. I also want to continue with things I have started. My work regarding
disability and inclusion is still very close to my heart and I am as motivated
as the day I started. This blog is the public face of HUVs and I am really
lucky that you read it. I will continue to post with helpful tips but I must
confess that it helps me as much as others. A cathartic action that allows me
to breathe and remain sane.
Finally, I want to leave this post with words of thanks to
all those who have helped me, picked me up when I have fallen and forgiven me
for the trying days.
I do have a wish, that you all grab everyday like it is your
last and never put things off until tomorrow.
Tomorrow could be the day it all changes. Never look back with
regret. Live your lives by the code of
CARPE DIEM.
I like this train of thought………….
Life isn’t about
waiting for the storm to pass; it’s about learning to dance in the rain………….
