“Face of my Disease”
Introduce my condition. Picture. My relationship with my
health and condition. Few interesting facts about myself as a person AND as a
patient
I’m sat in a local coffee shop, writing. I do this quite
often, and it strikes me how much of a creature of habit I’ve become. How
easily things have become to get used to.
It never used to be like this. Having an incurable,
invisible illness changes you, it must, I believe. I haven’t always been since,
nor have I always had my condition; in fact it’s only about 18 months old.
I have Crohn’s Disease, an Inflammatory Bowel Disease (IBD)
which is a long term condition that inflammation of the lining of the digestive
system; from mouth to anus. Common symptoms are diarrhoea, fatigue, abdominal pain
and weight loss. Other symptoms (extra gastrointestinal) range from mouth
ulcers, joint pain, eye infections and skin complaints. Crohn’s can affect any
part of the digestive tract and can spread. Notice here that Ultraitive Colitis
(UC, another IBD) is located to only the large bowel; Crohn’s can be more
extensive and aggressive.
Luckily, for me so far, I’ve yet to see my Crohn’s spread
further than it was when first diagnosed in Sept 2011. Despite being only located
in my colon, my disease rapidly went from mild to severe within a couple
months, meaning my medication doses and strength grew exponentially somewhat
overnight. My last medication was a subcutaneous injection called Humira; an
Anti TNF drug that helped control and vastly reduce the (then chronic)
inflammation I had. I finished that in the New Year and have been on courses of
Predniosolone (steroids) since to control the lingering inflammation.
Eight times out of ten, I manage my condition extremely well
and am able to go to work and maintain a good lifestyle, despite my dietary
restrictions. Acceptance of my condition was an extremely fraught process which
took me into counselling to help me through the worst of it. I write my blog to
help deal with the depression and anger I feel (and felt) as part of my
diagnosis. I’m 24 and feel about 70 some days when my subsequent joint complain
flares up. But I still keep going.
Despite the anger and depression, I would classify myself as
a good patient. I have yet to refuse or dismiss a treatment course my GI (Gastroenterologist)
advised me to take, or fail to turn up for a test or procedure. I trust my GI
to do what is in my best interest, what is best for my disease at that point in
time. I would rather try and fail at a medication that be too scared to take
it. At some point, you have to live and let live, trust your doctor to treat
you the best way they can.
I am a graduate but stuck in an unqualified job because my
health problems have and still limit my body to move onwards. But, I am working.
I am glad of my job for the most part; it keeps me sane when I need rescuing
from the crap that my condition throws at me, at periodically inconvenient
times. But I keep going.
I keep going.
If my condition has taught me anything, it is to know it will
always get better. You might have to go through some pain and question life and
yourself before you get there, but you will get better. Having some faith in
another person to take care of you is important. As we go on with our
conditions, as they grow and get older and we get more comfortable with them,
as we learn more about them, we take back some of the control they have over
us. It is a battle, I won’t lie, but it such a rewarding feeling knowing you
are fighting against it and winning. And you will, you will win at some point
down the line. Keep hold of that.
