Alice vs Her Own Body - The Fight Back!
So I now had a clinical diagnosis, this internal
war raged on and I was given steroids to reduce the swelling of my
liver, get my body under control and immunosuppressants to well,
suppress my overactive immune system (I would rather have an
overactive imagination than immune system it would be much better
but hey, can't get everything you want!).
I can take on the world! Oh, okay, maybe not...my knees hurt.
Do you remember I spoke about being on steroids
before? Well, that was a drop in the ocean compared to 18 months of
steroid induced highs and lows and side effects. The highs made me
feel like I could take on the world! Come on world, I am up for some mischief! This was frankly bollocks, I
wasn't fit to take a trip to the shops some days never mind take on
the world. The lows/side effects were feeling like I would never get
better, having clearly visible shakes, pain, nausea, gaining weight and
having a moon face however the weirdest was becoming more hirsute. This is a very unfortunate side-effect of
long-term steroid prescription and combined with my moon-face and
going up two sizes it made me lose all confidence. I thought 'Hey, look
on the bright side, if this is how this is going to go, maybe I
could join the circus as a bearded moon-faced lady or if it gets any worse as a ware-woman!'
I finally and extremely slowly came off steroids
but I will never be able to stop taking immunosuppressants or
medication for my CD. It has taken over two years to get back to any
semblance of normality, lose the steroid weight and moon-face, for my
hair to thin out, to regain my confidence and for my Jolene treated
beard to disappear (ok maybe not beard but definitely side burns and
a moustache).
So, that was fun, what do I do now?!
Once you are given a clinical diagnosis and given
medication that's it as far as the medical professionals are
involved, you're not a person, you are a case. I asked how I live
with it, they couldn't give me any answers.
Nobody told me what living with two autoimmune
diseases was going to be like, nobody said I would be in pain almost
every single day, that it would have a long term physical, emotional
and mental impact. Nobody told me that people would see and treat me
differently, that I wouldn't be able to do all of things I used to,
nobody mentioned that sleep would become my best friend, that I would have good days and bad days and there was nothing I
could do about it. That is the real reason I wrote about having CD
and AIH, nobody tells you that what you are going through is 'normal' and that eventually things will even out and that you will learn to live with it.
There are still and always will be days I feel
like I could climb a mountain and days where I can barely get out of
bed, with little or no warning. The exhaustion is always there,
lurking and ready to pounce. My left knee hurts most days, sometimes
my right knee and hips join the party. I lie down at the end of the
day and my whole body aches but it is ok, it might be really
difficult sometimes but it is essentially ok as that is just the way
it is.
Being diagnosed with AIH changed existing
relationships, broke some, strengthened others and has made new
relationships scarier as it can be a big thing for some people. I
have been living alone for the last year, the first time since being
diagnosed with AIH and this is the biggest challenge. There are days
when I can barely pull it together to get out of bed, where I ache,
my joints hurt and I feel so very sick that I most need a hand to
hold.
There is so little known about people who have
both CD and AIH that nobody can really tell me what might happen in
the future. This raises so many questions and fears about the future
but you would be here all day if I started on that! Worst case, I
need a new liver or operations on my intestines. Best case, it
continues as it is as they are incurable. What I do know for certain is that I have to
continue to laugh. I have to laugh at being the same colour as a
Simpson's character and when the nurse is on her third attempt at
taking blood from my hands, chuckle at embarrassing bum doctors and at
being terrified of the beige scanner of hell and giggle at making old
lady noises when my joints are particularly painful. Just because I
laugh and try to maintain a sense of humour about it doesn't meant I
don't take it very seriously.
I do have to take it a little easier but I can't
let it stop me living my life. However, here a few of the lessons I
have learned:
- Rest. Rest often and with ice cream and episodes of Spaced.
- Laughter really does help, even when a nurse is stabbing you in the hand
- Barium meals do not give you superpowers
- Hot baths are the new going out on a Friday night
- Steroids may make you feel like you can take on the world but you really can't
-
Never open your eyes inside a scanner unless you like feeling as though you have been buried alive and most importantly of all:
- never, ever google the name of your disease and then press on images. Boak.
Thank you very much for reading this, if you want
to ask me anything please feel free to do so.
More information on
Crohn's Disease is available from www.nacc.org.uk
and there is a fantastic forum available at www.crohnszone.org
More information and a
great forum for Autoimmune Hepatitis is available at
www.autoimmunehepatitis.co.uk
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