More than just a bag lady

In hospital wards all the good drugs like morphine are locked in the CD cabinet (controlled drugs). They have to be administered by 2 registered nurses who must both stand and watch you take the medicine/swallow the tablet.  Tonight the key to the CD cabinet has become stuck in the lock and the nurses cannot get it open. That means that patients, like me, who are waiting for our bedtime pain relief are starting to climb the walls.  It just so happens that one of the sisters is doing a nightshift tonight. She's called the site manager who has in turn called the maintenance guys but in the mean time she has 8 patients requiring a controlled drug. Hospital policy states that she is only allowed to borrow 1 controlled drug from 1 other ward. But she has 8 patients. How's that gonna work then? I suggested that she should just go and borrow the biggest bottle of morphine they've got and we will just share it out amongst ourselves...but apparently that's not allowed. Sister sa...

I've recently applied for Employment and Support Allowance as my employer is no longer paying me Occupational or Statutory sick pay.  Last week I received a phone call from the benefits office asking if I had sent in my SSP1 form with my claim. This form is issued by the payroll department detailing why they can no longer pay SSP and the date from which you no longer receive it. I informed the advisor at the benefits office that yes, I had sent in this form but said that they couldn't find it. They also said that my medical certificates had become detached from my claim form. Bloody brilliant.  Yesterday I received 2 letters from the benefits office. The first saying that I needed to provide medical certificates to support my claim and the second saying that my claim for ESA has been refused because I have not paid, or been credited with enough national insurance contributions.  What the fuck??!!!  So they've lost my medical certificates and apparently I haven't paid...

I didn't have the best nights sleep last night. The first cannula they put in my wrist came out after a few hours and I ended up covered in blood and saline. I'm not easy to cannulate and after a few attempts the Charge Nurse managed to get one in my arm but it was in the crease of my elbow so I had to keep my arm laid out flat and still- if I bent my elbow then the drip would stop dripping. By 11pm this had tissued though and I ended up with a large, painful lump where the fluids were going into my arm tissue rather than the vein so that cannula had to come out. The night nurse came to try and get another cannula in about half past midnight and lets just say cannulating isn't her forte. She eventually managed to get one in my hand after a number of attempts and I was back on the drip.  At 3am the nurse came to give me some antibiotics into my Hickman line. Because the antibiotics need mixing and it has to be done sterile this isn't a quick job and took about 20...

This morning Hubby was up and out at the crack of dawn for a breakfast meeting at work. That left me to get the kids ready for school on my own. Big Fella was up and watching Teenage Mutant Ninja Turtles in the living room when my alarm went off at 7.15am. Big Girl was in bed and refusing to get out because she didn't want to go to school. Brilliant.  I had to drag Big Fella away from the TV to get him to get dressed but promised him that he could have his breakfast on the sofa so he could finish watching the episode.  Taking a deep breath and summoning all my energy I go into Big Girls room where the conversation went something like this: Me: get up, it's time to get ready for school.  Her: no Me: you have to get up and get dressed.  Her: no Me: why don't you want to go to school? Her: because I hate my lessons Me: but you have to go to school.  Her: I don't want to go and you can't make me  Me: (heavy sigh) please get up an...

Half term is over and the kids are back at school. Or that's what I thought I would be writing. Instead, I've had Big Fella at home with me today after being awake last night crying and complaining of tummy ache. He spent the night in bed with me and Hubby, clutching the sick bowl and didn't really seem himself this morning when it was time to get up and get ready for school. But as is always the way, as the day has gone on he has perked up, demanded lunch and snacks and been playing games on the laptop, so it's back to school for him tomorrow.  Me, on the other hand, I seem to get worse as the day goes on and usually by 6pm I am good for nothing and in pjs, ready for bed. This is the reason for my less than daily blogging- I'm simply too exhausted to put pen to paper (or tap out a post on my iPhone).  Today I've spent most of the afternoon/evening tucked up in bed as everytime I stand up I go all dizzy, the room spins and I feel like I'm going t...

It's now Thursday and I've almost survived half term. It's not actually been that bad. The kids have been pretty well behaved- I think having their cousins here to play with has been good fun for them.  I've loved being at home with the kids, although it has tired me out- I've been in bed by 7pm every night which is way before any of the kids!! It's also been good to have some quality time with  my niece and nephew too. We haven't done anything particularly exciting. One morning we went to soft play and today the library but other than that they've just played at home or out in the garden (when it's not been raining) and they've sat and done colouring in for hours on end. We've also had lots of carpet picnics and watched lots of Coach Trip, Peppa Pig and Teenage Mutant Ninja Turtles.  Yesterday however I spent pretty much the whole day in bed because I felt so ill. My whole body ached, I felt really yucky and totally exhausted. I must have be...

The last few days I've experienced fatigue like never before. Doing even the simplest things leave me feeling exhausted and about to collapse.  I think it's probably because at the moment my diet exists of eggs and rice and my attempts to include anything different have a 100% failure rate. I've had to cut out the Ensure milkshakes as they're hurting my tummy and instead have switched to the Ensure juices which I have to say are pretty horrid (but a necessary evil at the moment). I can't manage cheese and roast potatoes so I don't know if its dairy that is causing the problem or the fat in the food.  Today I'm having mash and gravy and if that goes ok then I might try sweet potato mash and see how I go with that.  On Friday I went to the pharmacy to collect my prescriptions. I had contemplated walking but it was too far so my bestie gave me a lift. Good job too as I had 7 carrier bags full of medication and there's no way I would have been able to carry ...

It's 7pm on Valentines Day and I'm tucked up in bed with my hot water bottle feeling cold and a little bit ill. I've got 2 pairs of thermal socks on, fleecy pjs (with a T-shirt underneath and a jumper on top), a scarf and an extra duvet. Hubby has just brought me a Lemsip and an Ensure juice (the easiest romantic dinner he's ever had to prepare!) and I've told him I'm going to hook up tonight.  Not a sexy hook up like this picture... No, I am going to hook up to my TPN feed so I will have a wire coming out of my chest which attaches to the feed bag which is kept in the rather special looking rucksack. I will be looking pretty hot...not!!  So there will be no 'sexy time' for hubby this Valentines night. I did get him a card though and he's seems happy enough with that. I'm lucky that he's so easily pleased and I'm very happy to have him. He's stuck by me through thick and thin, been by my side throughout the ups and downs of this journ...

I've been off work now since June last year and have run out of Statutory and Occupational sick pay. As a result I've had to apply for... ...Benefits.  As someone that has worked from the age of 15 I hate to think that I'm getting handouts and that other people are going to work so that I can have benefits. But being paid a big fat zero means that times must. Plus I've paid my taxes so I guess I'm entitled to a little bit of help whilst I'm recovering and not well enough to work.  I had called the benefits office before Christmas and had a claim form for Employment Support Allowance (ESA) sent out to me. But I found that a 50 page form and morphine don't go well together. I tried to do a bit each day but just found it hard work and soul destroying so I kept putting it off.  Then I went into hospital early January and thought I would do it when I got out, not expecting to be in for 4 weeks, so yesterday I thought that I would bite the bullet and ring them aga...

Yesterday I had to go to see the GP. It's not that I had taken ill over the weekend but because I needed a Doctors certificate and they no longer issue them in hospitals. So I had just spent 4 weeks in a hospital, seeing three Doctors regularly on the ward who are specialists in their field and my illness but had to get my GP to assess how long I was likely to need off work even though she had to ask me what I operation I had just had! Crazy. They don't even issue you the yellow certificate anymore that proves you've been an in-patient hospital and what you've had done. All you get given now is a 'discharge summary', usually typed up by the most junior Doctor who hasn't always been responsible for your care and usually has to read your notes before he can tick the right boxes on the forms. On my most recent one they had gotten my medications wrong and only noticed when I pointed it out and on the one last October to the question 'Has an operation been ...

I finally made it home and the last few days have been wonderful. I haven't written a post since coming home because I have been enjoying the time with Hubby and the kids and us all being a family again. But this afternoon Hubby has gone out doing man jobs (recycling, buying stuff at Homebase etc) and the kids are just playing and watching TV so I thought that I would have a little rest in bed and update my blog. Hubby came to get me from hospital on Thursday afternoon about 4.30pm. The traffic was pretty bad on the way home due to the rail strike and the M25 was gridlocked. We got home about 6.30; Big Fella was at Beavers and Big Girl was playing at a friends so the house was so quiet. The first thing I noticed was a feeling of space. I think after being in a hospital cubicle and confined to a ward for 4 weeks the open plan layout of the house felt really spacious, especially as Hubby had done a great job of keeping it tidy. We had half an hour on our own before he had to go a...

I'm all packed up and ready to go.  I've got my medication, ensure drinks and discharge letter (plus a bag of dirty laundry for Hubby to do!) I'm just sat on my bed waiting for Hubby to get here and pick me up. He's currently battling his way through traffic, made worse than usual courtesy of the tube strike.  I've said goodbye to my lovely Irish neighbour who I've become very fond of. I made her a card because she liked the ones I made for the kids. She's a very religious Irish Catholic so she loved it.  It has been lovely spending time with her, listening to the stories of her childhood and what it was like growing up in Ireland. She has prayed for me everyday and we've been to Mass together. She has never moaned or cried when in fact she has more right than most to complain given her health problems. I hope that the doctors continue to look after her so that she too will be packing her bags and going home to her husband and dog, Honey.  As for me, I c...

After 4 weeks in hospital the doctors have told me I can go home tomorrow. I text a few family and friends earlier to tell them and they're so excited. So why aren't I? It's not that I don't want to go home. I do. Desperately. I want to wake up in the mornings next to my husband. I want to put my kids to bed at night and watch them sleep, looking like angels. I want to go to Tesco and do laundry and all the other boring stuff that makes up life.  But it wasn't supposed to be like this.  In my head I was going to come into hospital, have the operation and come home 'fixed'. Maybe I'd told the kids that simplified version so many times that I had started to believe that it really was that simple.  According to the pre-op letter I was only supposed to be in 4 nights, but we told the kids 2 weeks just to be on the safe side. I never imagined that I would be in for double that. I should have known really that this is me we're talking about and nothing eve...

I don't really feel like blogging today.  I've spent the last 36 hours in bed and in pain and I'm feeling pretty down. But  I think it's important that I detail all  my journey, partly so that I can look back and remember the ups and  downs and so that you guys reading this really understand  the whole picture. Yesterday morning I got up and had a shower. I felt more tired than I had been feeling but thought it was because I had had a busy weekend of going out to ikea and friends visiting on Sunday.  Then the dizziness and nausea kicked in just after lunch. It came pretty much from nowhere and hit me like a ton of bricks. Every time I stood up I thought I was going to pass out. The room was spinning so bad that I had to call the nurses to help me back to bed from the loo. The pain in my tummy and rectum was also getting worse. I was in agony. The doctor came and did some blood tests, sent me for a chest X-ray and told me not to get out of bed ...

Some of you reading my blog may never have had the pleasure of a stay in hospital so I thought I would do 'a day in the life of' to give you an idea of what happens. This routine is quite specific to the Intestinal Failure Unit (IFU) and may not happen on other wards or in other hospitals but this is my life at the moment.  6am- nurse comes and does observations (blood pressure, pulse, temperature ect). If you're lucky you can go back to sleep otherwise it's an early start! 6.30am- another nurse comes to give me antibiotics. These are going into my Hickman line to try and fight the infection.  8.30am- breakfast. We are lucky at St Marks to have to option of a cooked breakfast so I had a quorn sausage and a hash brown. Sadly toast isn't allowed incase it sets off the fire alarm (apparently last year a patient snuck a toaster onto the ward and kept it in her locker. When she used it the alarm went off and the whole of the 9th floor had to be evacuated!) 9am- daily wei...

I spend all week in hospital counting down the days until I get to see Hubby, Big Girl and Big Fella. I only get to see them once a week because St Marks is so far from where we live so it makes our time together even more precious. After 3 weeks of being stuck indoors (except for the 2 trips to Hobbycraft) I wanted to get out and get away from the hospital for a little while. I asked Dr 18 yesterday if I could have day release over the weekend and he said yes. As long I had all my medication I could go out in between drug rounds. Wahoo. Day pass. I was going to be free! I knew I couldn't go home though. Firstly it would be too much for Hubby and the kids to come and get me, drive me home, to then drive me back to hospital after a couple of hours. They would end up being in the car for the best part of 4 to 5 hours depending on traffic and that wasn't really fair on them.  Plus when I was in hospital in December I got leave for a day and went home to put the ...