More than just a bag lady

I was discharged yesterday! Who would have thought it when this time last week they called the priest and I woke up to find him anointing me. I thought I was getting the last rites 😧 but I was only getting the anointing of the sick. Phew. But that's bad enough.  Anyway, I'm home. But not for long. I'm hoping to head off on my summer hols soon. So lots of packing to do. Not just the usual clothes, but medication, TPN, supplies, sharps bin, ensure drinks, hand wash...the list goes on and on. I got a new bikini- what do you think? When I got discharged from hospital yesterday the first thing I did was surprise the kids by going and picking them up from school. The look on their faces when they saw me brought a lump to my throat and I had to try and hold it together in the playground.  Today has been hot, hot, hot so I've spent the day in bed with the fan on. The kids have been fab, even letting me have a little sleep. They know not to cook anything, answer the door or do ...

After I finished my A-levels in Germany in 2008 I decided to spend half a year as an aupair in the UK. When I sat in the plane I was extremely nervous and I would never have imagined to meet such a wonderful family and that they would always make me feel part of the family from the second I arrived in Stansted. I arrived in January and I think it was only about 8 weeks later when Nat told me in the morning she didn't feel well and she might have to go into hospital. In the afternoon Dan came home and told me Nat was in hospital and would have to stay there overnight to get checked through by a doctor. I was really worried because I didn't know how Nat felt and I was struggling to understand all the "medical" English. I remember being told days later that the doctors had to rush Nat in an emergency surgery just weeks before their wedding in May.  When Nat came back from hospital I remember that she sat down with me to explain me like a 3-year-old what ...

I wanted to start a blog during the summer of 2013 but wasn't brave enough to write down all my thoughts and feelings. I am now 1year in remission so it seems fitting to tell my story and show you all how far I have come.   I’ll start at the beginning… My 2013 started sick, in bed, in my mother in laws house whilst all my other 20 year old friends partied hard. I was so jealous! That's pretty much how the whole of 2013 treated me - sick! Between August 2012 and October 2012 I was fobbed off with IBS, stomach bug, celiac and just that I was allergic to certain foods. It wasn’t until one lovely nurse in A&E realised that she had seen me most weeks and decided to put me on the list for a colonoscopy as my inflammation levels were sky high. Alas I was diagnosed! I wasn’t going mad, it wasn’t in my head, I had Crohns disease!   I knew absolutely nothing about this scary thing except that it stopped me socialising and going to work. It was completely debilitating! ...

Today I had the test that I have always hoped I would never have to have. The defacating pouch-o-gram. Aka the shit while we X-ray you test.  You're probably reading this completely horrified. The thought of having to poo in front of other people, strangers, is well, quite frankly unthinkable. But I'm afraid that's what I had to do this morning.  The test is used to help the surgeons determine my pouch function. To know whether it really is a truly  naughty pouch as we all believe (which may mean having  to go back to having a Stoma😢) or if it's just playing up but will get better with time.  I was gowned up and taken down to the X-ray department. I really didn't know what to expect other than that they would fill my pouch up and then X-ray me whilst I pooed. The details didn't get explained to me prior to the test so my mind went crazy trying to fillin the gaps, imagining all sorts.  I was taken into the X-ray room and they went through my details and ask...

I've just been to the day room to do the evening rounds for the bay. Not cups of tea or coffee. But hot water bottles.  Yes, you read that right. Even in this heat,  on a ward that could grow tomatoes and cannibis plants, we still need our hot water bottles. They're as effective for pain relief as a shot of morphine.  So tonight we are all laid on top of our duvets (yes, duvets. We've all had single duvets brought in from home as they're much snugglier than a hospital blanket. I've slept so much better since having it) with our fans on full, windows open and thinnest pjs on, with our hot water bottles. What a sight we must be. No wonder the doctors think we're all mad. Question is though: were we mad when we arrived or has being here sent us crazy? NB x

Talking to one of the other patients the other day about benefits and ESA (Employment Support Allowance) and she told me that after 13 weeks the payment should go up from the measly £70 to just over £100. It's still not a lot but that extra £30 a week would make a big  difference.  I rang the ESA people today and was told that yes, you are paid the lower rate whilst you're in the assessment phase. Then at 13 weeks ATOS (a private company sub-contracted by the DWP) have their doctors review the medical questionnaire that you send in when you make your original claim. They then decide to either 1. Stop your benefits 2. Call you in for a medical 3. Increase your rate based on the information given in the questionnaire.  So why haven't they assessed my case? I sent the form in way back in March so it's been 5 months! Apparently they have a backlog! A 5 month backlog? Are you  joking? Because the  DWP couldn't give me any more information I asked for the  teleph...

Earlier in the week, before I got really poorly (that's a whole other blog post), the nurses all had a laugh at my expense. I hadn't been feeling good. My pouch had been going crazy and I hadn't slept well for a few nights. So I was completely exhausted.  Around midnight I had to make another mad dash to the loo. Now here comes a graphic poo description so scroll down if you have a sensitive stomach! At the moment one of two things happen when I go to the loo. I either have an explosive motion that pouchies often experience, or I have a drip, drip motion where it can take up to half an hour to empty my pouch completely of stool. (And yes, I do take magazines into the loo to pass the time!) On this occasion it was a drip, dripper and being so tired I leant my head against the wall. Knowing that I would be in there some time I thought I would just close my eyes. The next thing I know the sister is hammering on the door and shouting "Nat, Nat, are you ok?" "Yes,...

Following on from Saturdays, ahem, Sundays guest blog I thought I had better explain how I came to be out in London when I'm an inpatient at St Marks hospital.  Months and months ago I planned a weekend in London with 3 of my oldest friends. We've been friends since school but as we are now scattered around the country we don't get to see each other very often. The idea was to get together, have a good catch up and they would help me tick a few things off my bucket list.  The hotel was booked and paid for as was the icebar and the theatre ages ago.  The plan (as I saw it in my head- the other 3 might have thought differently!!) was to all meet in London on Friday lunchtime, check into the hotel and then head out to have dinner and drinks before going to the Icebar. Two of the ladies are pregnant but I had delusional ideas of going onto a club afterwards with the non baby carrying member of the group. I have never been to a club in London or the Icebar so that would be two...