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Posted on 3:00pm Sunday 2nd December 2012
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 Michael. 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 that 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? Whoever said that being a patient isn’t easy was a genius (yes it was me ) but being a patient then flipping to being well and then flopping back again, well that is a whole new ball game. Till next time
Posted on 8:24am Monday 26th November 2012
Sunday, 25 November 2012Patient/doctor relationship, is it the ultimate trust you can have in someone? I talk a great deal about what it is like for me being a patient and specifically a bowel transplant and inflammatory bowel disease patient. Actually being a patient though isn't just about me the patient it is about finding a doctor then building a relationship like the one that I have with my transplant team and specially with the guy who is at the top of the tree my transplant surgeon Anil Vaidya. You see when you go through chronic long term illness you build up a relationship with your doctor that is quite different to most people who go to hospital. Then when you go through transplant and require long term care that relationship goes up on to an even higher level that you can imagine. It is not like a routine bit of surgery where you can often feel like just a number on a list here you really build a one to one connection and that is as scary as it is fantastic.
Posted on 5:58pm Friday 9th November 2012
Wednesday, 7 November 2012From QPR to patient compliance & a bowel transplant It was never a sending off, I mean not even the home fans around me called for it and then there was the goal. Don't get me started on the goal. I mean not only was he offside once but actually twice - the referee is a w...........onderful guy the QPR fans chanted or something similar. As you could tell I went to football last weekend. After 3 years of no live matches I went to Arsenal to see them play the mighty QPR and yes you guessed it we lost. we could clearly see offside from here :)
Posted on 8:21pm Saturday 6th October 2012
05 Oct 2012 08:54 AM PDT
Posted on 7:43pm Thursday 20th September 2012
Thursday, 20 September 2012
Posted on 9:59am Tuesday 4th September 2012
How do you define normal life? I'm pretty sure that my idea of normal life will be different from yours. When you are recovering from long term illness and major surgery the phrase that keeps popping up is "don't worry you will soon be back to a normal life."
Posted on 9:43pm Monday 20th August 2012
Monday, 20 August 2012
Posted on 3:39pm Friday 27th July 2012
Wednesday, 25 July 20125.41pm The time between blog posts seems to be getting longer. Some will say thank goodness and for those who don't I apologise for my tardiness. In truth I have been all over the place this last week or so both healthwise and also trying to get back to a normal life and develop some new avenues.
Posted on 9:25am Thursday 12th July 2012
Wednesday, 11 July 20125.15pm So much has happened over the last week in my bowel transplant world I am not sure where to start. The beginning is usually a good point I guess.
Posted on 9:27pm Tuesday 3rd July 2012
Friday, 29 June 2012 8.51pm I'm a bit annoyed with myself that it has taken another week to blog, not even any good medical excuses this time just my own bad time management. Mind you some of you may think it is a good thing, me not rambling on too often.