"Retraining your brain to flip out of patient mode is really hard"

I have only really heard of the term “flip flopping” in connection with UK politics; in other words when a political party keeps changing its mind on policy. However at the moment I think it best describes the challenge that lies ahead in getting to grips with my bowel transplant.

It is not like my new bowel is flip flopping but it is what my brain and my mind set has to do. You see the trouble with long term illness is that you can forever be a patient and forget what it’s like to just be you. I have really only not been a patient for 11 years of my life and now, here I am having gone through one of the rarest transplants, being told to get on with my life and try and adjust to not just being a patient but being me. And that is flipping hard.

For most people the moment you are out of hospital you are fine and there is nothing wrong with you. They don’t see the accidents at 3am and they are not there when from literally nothing I start being sick and it doesn’t stop which is exactly what happened last night whilst watching I’m A Celebrity Get Me Out of Here. So for me there are parts of every day when I feel a patient yet I need to train myself to get out there, do all the things I want to do, put being a patient in a box and get on with life. How do you do this? How do you flip flop from patient to non patient and back again? For me when I have the good spells and feel great it gets much harder to revert back to patient mode when I get sick. I find myself getting frustrated, even angry yet that is totally irrational as I am transplant patient and that doesn’t leave you.

Often the easiest things to say are the hardest things to do and lead to silly reactions from me. I fight very hard not to be treated as someone who is ill; yet quite naturally the first thing people want to know is are you ok. I would probably be very upset if they didn’t so why get angry. So as you can see training the brain to flick a switch one way or another constantly is not so easy. I mean take one of my favourite programmes right now Homeland.

How does Brody cope with playing both the terrorist and potential Vice President? Is Carey in love with him or has she trained her brain to be able to simply tease him in to doing all she wants? Hey I know it is only tv but it would be so cool if I could have a script writer come in and just write my week out for me. I could go from one scene to the next, ill patient one minute, recovering patient the next then on to normal dad and hubby before ending the episode back in hospital. We could then all sit down and have a cup of tea in between takes. That would be so much easier than having to do this in real life.

So as farfetched as it may sound I am on a mission to change the world that I live in. To try and make an impact on the lives of patients undergoing similar experiences to me but at the heart of that my brain then flip flops in to patient mode, I get unwell and think what the hell is going on. Hey I would love to emigrate and live in a warmer climate and have a better quality of life. One side of my brain is like, for goodness sake get on with it you lazy lump; the other side is like – yeah right who do you think you are?

And there you have a typical patient dilemma in 600 words. Can a long term patient ever truly stop being a patient in some shape or form? All I know is that if you keep going on about how ill you are then you will probably stay ill and that is a mindset you can do something about. I mean take my 95 year old Grandma. She is one truly amazing lady but every day she will moan about an ache or pain somewhere yet we know that if you talk to her about something else she will forget about it. Then she gets diagnosed out of the blue with breast cancer and brushes it off with the bravery so many wish they could have. What is it inside your head that says ok I am going to moan about a bit of trapped wind (mind you that can be painful) yet when I get a really bad illness I am going to be a strong as anything about it?

Being a patient then flipping to being well and then flopping back again, well that is a whole new ball game. Whoever said that being a patient isn’t easy was a genius.

Until next time.