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:
  1. Rest. Rest often and with ice cream and episodes of Spaced.
  2. Laughter really does help, even when a nurse is stabbing you in the hand
  3. Barium meals do not give you superpowers
  4. Hot baths are the new going out on a Friday night
  5. Steroids may make you feel like you can take on the world but you really can't
  6. Never open your eyes inside a scanner unless you like feeling as though you have been buried alive and most importantly of all:
  7. 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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