More than just a bag lady

Big Fella has been waking in the middle of the night recently. He's absolutely hysterical; it's like nothing I've seen before. He's  screaming, crying, kicking out and inconsolable. Sometimes he's still in his bed, other times Hubby and I find him in various places around the house. Those times are even harder to deal with as trying to get him back to bed are so difficult and now there's no way I can pick him up; I'm not strong enough or stable enough with my dodgy leg and he's just way too big now.  During these episodes it seems like he's kinda still asleep. It's almost like he's sleepwalking except he's "sleep screaming". It's very difficult to get anything out of him, maybe the odd word or nod of the head so it's been very difficult to work out what's causing them. Hubby wondered if they were linked to him playing games on the iPad/Xbox but he doesn't have any violent games despite him pleading and begging to...

I don't think I ever blogged about what actually happened at my pain clinic appointment. I told a few close friends and family members but because I went straight from the appointment in London to the Lake District for a christening I never got round to posting an update on here.  Before the appointment I sat nervously in the waiting room, my stomach filled with butterflies and nervous trepidation. I think it was because I felt like a lot depended on what they had to say. The last pain Dr at QE2 hospital had said she couldn't help me because I was such a complicated case which was how I ended up at UCL in the first place. Surely I wouldn't be too complicated for UCL? Or what of they looked at my file and scoffed saying that they didn't know why I had been sent to them? I felt like this was my last chance saloon; I had been told they were the best pain team in the UK and if they couldn't help me then no-one else would be able to. When my name was called I looked up a...

To the lady that did my PIP assessment today I just wanted to say this: You introduced yourself and said you were a nurse. Well shame on you. Nurses are supposed to care for patients, to help them get better and have their best interests at heart. Do you think you did any of that today? Let me tell you the answer: you did not. You cannot call questioning me for 2 hours on every aspect of my life nursing. I call it interrogation. I  understand that you need to talk through my illnesses, my medications and the effect it has on my life. But where was the compassion? You had a poker face throughout and never once sympathised, empathised or apologised for the intrusion into my private life. You never even batted an eyelid as I sat there sobbing after having to reveal the most humiliating aspects of my condition and describing what it feels like to hit rock bottom. Well screw you lady.  What did you learn from me today that I hadn't already written down in the ridiculously long appl...

The day has arrived. I have my PIP appointment today. After the last one was cancelled I didn't know where or when it would be but I got a letter through the post rescheduling it and it's today. I'm dreading it. My stomach is in knots and my head is all over the place. I'm trying to get out of bed but my legs don't want to work. I just want to pull the duvet over my head and pretend that it's not happening.  It's bad enough that I have to live this life but then to go and tell a complete stranger all about it and admit how much of a mess everything is just seems too much. I know that the system is supposed to be there to make sure the right people get the money and that 'fakers' don't slip through the net but it feels as though it's set up to make it as difficult as it can possibly be. I applied for PIP (personal independence payment) which replaced the old Disability Living Allowance in AUGUST!!!  It's now April. The form I had to fill i...

Today is a really significant day in my recovery. It was exactly a year ago when a friend sent me a picture of the kids on their scooters for scoot/cycle to school day and it broke my heart because I was in hospital and wasn't with them. Things in hospital had been really tough and it was kinda like the straw that broke the camels back. I remember being so down that day and feeling as though I had hit rock bottom (although sometimes I wonder how many rock bottoms there are for one person to have to hit in a lifetime!). I had no signal on the intestinal failure ward at St Marks so wasn't able to go online or message friends. I  desperately wanted to get well enough and go home and be with Hubby and the kids; to take them to school and tuck them in at night and read bedtime stories but there didn't seen to be a light at the end of the tunnel.  I remember what happened as if it were yesterday. I left the ward as I needed to get some air and I just couldn't be there any mor...

We have come to the Lake District for the Baptism of my friends little boy. We were here a few years ago for the wedding and I expect we will be here in another 2 or 3 years for another baptism! I've run around like a headless chicken trying to get everything packed and ready and it was even more stressful than normal because I had to get into London to attend my appointment with the pain specialist.  After the wedding in North Yorkshire a couple of weeks ago I was feeling a bit more confident about leaving the confines of my little bubble at home and venturing out into the big wide world. However this time my packing wasn't so successful.  I 've left my pump at home.  The pump is essential to me being able to have my feed because without it there's no way of getting the liquid out of the bag, through the tube and into me. Bugger.  I've just rang the on call nurse and they have said that they will try to get one out to me as soon as possible. So I've had to go o...

I was visiting a friend that I not had chance to see for a long time when my phone started ringing. I was going to ignore it as I didn't want to be rude by talking on the phone when I was with my friend but something made me pick it up. And I'm so glad I did. It was a secretary from University College Hospital London (UCL) offering me a cancellation- for the very next day! I was so excited that I think the woman on the other end of the phone thought I was mad but this phonecall had just made my day! Earlier in the week I had been to St Marks for a catch up with the specialist pouch nurses and my surgical team and it hadn't been too positive. Basically they told me that my pouch was completely disfunctional and that they didn't think there was anything they could do to make it better. So I either put up with the spasming and a million trips a day to the toilet or go back to a Stoma. A Stoma is the last thing I would want as I've spent the last 2 years having all the ...