As it’s a New Year I have
been reflecting on many things and believe it or not, I find that I have to
acknowledge there are positives to having CD. “What are you talking about” I
hear you shout! Are you crazy? What
about pain, the fatigue the endless trips to hospital………….But I genuinely
believe it to be true. Maybe its because I have lived with this disease for 28
years, longer than I’ve lived without it, or maybe its the fact I’m pushing fifty
that I can reflect on some of the positives of my experience with Crohns
disease.
Reading back the above
paragraph, it sounds quite glib and believe me there have been many times over
the years I have felt the whole gambit of emotions, anger, hopelessness, guilt
and frustration to name a few. Anger at the fact my body has let me down.
Hopelessness of yet another treatment that has failed. Guilt and frustration
that I have yet again let my wife down or cancelled family travel plans, not to
name the countless number of my daughters school plays or my sons football
matches I have sadly missed. If I’m being completely honest I have on occasion acted
like a screaming two year old throwing my toys out of the pram and acting out
in front of friends, family, doctors nurse, you name it I’ve done it but I will
come back to that shortly.
So, what are the positives? Well,
firstly, perspective, I never take my health for granted. I guess you have to
be chronically ill to understand this one, but I’m truly thankful for each day
I can get out of bed and join in with life, I take great pleasure from the
simple and mundane tasks of life, like having the energy to tidy my house, make
dinner or pick the kids up from school. Secondly, I’m eternally grateful for
the free services and excellent care and compassion the NHS has provided me
over the years. I asked my wife to come to my last Vedoluzimab infusion, not
for support or pity– but because I wanted to introduce her to the nursing staff
who look after me and the fellow-suffers I see monthly, who I would now call friends.
As I’ve mentioned I have on occasion
acted like a small child in terms of accepting and dealing with this disease, Food
being the main focus of my child like approach. Fortunately with the help of
IBDoc I am slowly changing my attitude to food. I no longer sneak in the
kitchen for foods I cannot tolerate, dairy being a good example as it only
serves to accomplish two outcomes. 1: consuming dairy makes me feel absolutely terrible
2: if I eat dairy over the course of a couple of days my Calprotectin level rises
significantly. So I’ve decided to understand the food I eat and the impact it has
on my body. I’m still on medication (Vedoluzimab) but with no real side effects,
on this occasion, I can again find the time to be thankful.
For
a long time I didn’t want to consider trying to find something to be thankful
for with my disease, and that excepting my situation felt like I was giving up.
I can’t really pin point the date I began to take the time to find gratitude
with my situation. But my new found attitude and my New Year mantra says it
all:
"'Enough' is a feast. Buddhist proverb