More than just a bag lady

In the midst of saying goodbye to everyone at school on Thursday I received a phonecall that turned my world upside down. My Grandad was dying and I needed to get to Nottingham soon.  He was diagnosed with terminal cancer only 2 weeks previously and the doctors had given him around 6 months. We were all confident that he was going to be around for a little while yet, so much so my parents still went on their holiday to Turkey that had been booked months ago.  But since receiving the diagnosis he seems to have deteriorated so rapidly that he was now pretty much bedridden and needing full time care. So on Thursday when I received the news that he might not last the weekend I had to make the decision to call Mum and Dad and get them home early. I was already very emotional that day from all the goodbyes at school so I knew I wouldn't be able to hold it in when talking to Mum. So thankfully Kelly (my little sister) said that she would do it instead.  I knew I needed to get up...

It was the kids last day at school yesterday, but it was also my last day there too (Yes bitchface it's all about me, me, me!) The kids seemed quite content that they had half a ton of haribo to take with them, their cameras, an autograph book and a handful of sharpies for their friends to sign their school shirt. Big Girl had her Hip Hop Pop street dance class before school and at the end of the practice the instructor sent Big Girl out to get me so I could watch them perform the dance that they had been learning. Normally I video everything but I stood there watching her dance with her friends and trying to soak up every last moment and commit it to memory. And with my memory the way it is that's no mean feat! Then it was time for them to line up in the playground and go into class. I gave them both a kiss and cuddle and told them to enjoy their last day and then the whistle blew. And as I watched them walk into their classrooms I realised that it was the last time I would ev...

The days arrived. It's the last day for the kids at their current school before our move to Nottingham. It was 6 weeks ago when we started letting people know that we were moving and that time has just flown by. I'm looking forward to going to Nottingham and being closer to my family but boy, oh boy am I going to miss all the brilliant friends I have down here.  Some of these friends have witnessed the journey that our family has taken over the last 6 years (some have even been around longer than that, they must be mad!) and the support we have received has been incredible.  I went from being a bright, bubbly, vivacious 20-something to nearly losing my life more times than you can count on one hand. I've gone from being a stay at home Mum, to working and then a 'sicknote' and needing plenty of favours from friends to keep everything ticking over. The kids have grown up and gone from being little ickle kiddies to ones that answer me back and cause me stress and worry...

I'm currently sitting in the treatment room on the Intestinal Failure Unit of St Marks hospital. Thank goodness though it's nothing too dreadful this time. No line infection or anything like that, so don't panic Mother! My Hickman line has a fracture. That's the medical terminology to say that it's split. As I was disconnecting my feed yesterday I noticed that there was a tear in the line towards the end (below the clamp but above the bionectar) My first reaction was "Shit! Shit! Shit!"  My second reaction was "I really haven't got time for this to be be happening right now" My third reaction was "I hope I don't end up with a line infection" My fourth reaction was "Calm down and ring the specialist nurses at St Marks" So that's what I did. They have a patient hotline and you call and leave a message. I'm terrible at leaving messages; I tend to waffle on and on, repeating my name and telephone number numerous ti...

Today is World IBD Day. So here's a few facts for you all... Did you know that worldwide 5 million people live with IBD? Purple is the international colour associated with IBD.  IBD is the umbrella term used to cover Crohns and Ulcerative Colitis which are both inflammatory bowel diseases.  UC only affects the large intestine but Crohns can affect any part if the digestive system, from the mouth to the rectum (bottom). IBD  is NOT the same as IBS (irritable bowel syndrome) Although they may share some of the same symptoms, IBS does not cause inflammation, ulcers or other damage to the bowels. So when people say "I've got IBS, I know how you feel" it's a bit like saying "I've got a headache, I know how you feel" to someone with a brain tumour.  You can't 'catch' Crohns or colitis although there are studies being done into whether it is genetic/hereditary. But don't worry- you won't get it from shaking hands with me.  1 in 210 peopl...

On Monday I went into Central London to have my first Lidocaine pain relief infusion. When they gave me the appointment a few months ago I knew getting to the hospital for 8.30am was going to be tricky but in reality it was bloody hard work. I had to get up before 6am and cut short my TPN feed otherwise it would have meant taking the rucksack  into London 😬 In the mornings my joints are stiff, swollen and painful (a side effect of Bowel disease is joint problems- I know, totally random but totally true!) so it takes me quite a bit of time to get up and get going.  There was no way we would drive into Central London so it meant getting a train in rush hour and making two changes on the underground. That wasn't too bad as I managed to get a seat and was actually offered one by a really cute guy on the Victoria line. I know I'm married but there's nothing wrong with window shopping! And I'm pretty sure that given the fact I had no make-up on, an NHS walking stick and hadn...

Have you heard of 'The Spoon Theory'? No? Neither had I before I got ill. Why would I have? I didn't spend my time trawling through the internet in search of lotions and potions and pills that might just make me feel a little bit better,  because I was well. I was out living life and having fun.  Don't get me wrong. I'm not saying that I don't have fun any more. I just have less of it, with fewer people and without the aid of alcohol!  The spoon theory was written by Christine Miserandino and she asks that when you reference the theory you add a link to her website, so here it is:  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ I  saw this tonight on Facebook and thought was a brilliant visual to help you understand the 'theory' (and my life) a bit better.  That really is what it's like having a chronic illness. But the trouble is you never know how many spoons you have when you wake up. My  body likes to play trick...

I've not really had much chance to blog over the last month because my life is so completely crazy. And the reason it's so mental is because  are moving back to Nottingham.  In three weeks. 😱😱😱😱 Hubby and I have talked long and hard about this over the last few months for  hours and hours, going over the pros and cons not only for us but for the kids. We've argued and I've cried. A lot. We've gone back and forth over the reasons why it would be good for us to move, how difficult it's going to be and how this is going to turn our whole lives upside down. We talked to my parents who thought that it was a positive move and straight away, without hesitation they offered for us to move in with them if we needed to.  As soon as this looked like it was becoming a real possibility I spoke to Bestie and we cried. We spend so much time together doing everything and nothing that the thought of there being 150 miles between us was literally heartbreaking.  And then all ...