More than just a bag lady

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 ...

I've just dropped off Big Girl to a friends house for a sleepover, collected dinner from Pizza Hut and settled down to watch Ant and Dec's Saturday Night Takeaway with Hubby, Big Fella and my parents. They are down for the weekend after getting an invite to Little mans christening on Sunday (besties baby). It's so nice that they're able to visit for nice reasons instead of making a mad dash down the M1 because I've been rushed into hospital.  I'm so excited about the christening. Hubby and I have the honour of being Godparents to such a happy, contented little boy who we both love very much. I wanted to help Bestie to get sorted for the christening. She's hired a hall with a bar but is doing her own food. Now even though I do say so myself, I do amazing buffets and I wanted to do it for her so that she wasn't stressing on the day, running around and trying to do food, decorate a hall and make herself (and the rest of the family) look decent.  Originally ...

    And today is one of those days. Hopefully tomorrow will be better NB x

I started writing this yesterday morning but didn't get chance to finish it as I ended up going to bed yesterday afternoon around 4pm feeling totally shattered and sleeping for 12 hours straight. When I woke in the early hours I had sweats, felt sick and dizzy. I got up to fetch a drink but felt like my legs were made of lead so I went back to  bed and that's where I've been all day. The only times I've been out of my pit are to go to the loo and to hook up because I didn't have any feed last night. The sicky feeling has died down but I have the aches all over and have woken up a couple of times with my pjs drenched from the sweats. Hoping it's a 24 hour bug as it's Bestie's baby's christening on Sunday and Hubby and I have the honour of being Godparents so I need to be well enough at least for the service. Anyway, back to my post... I've been waiting to hear from University College Hospital in London after being referred there from the pain clin...