I've hit the wall

You know the saying 'I've hit the wall' usually said by long distance runners to describe a point during the run where they feel like giving up, that they can't run another step? Well that's how I feel. I've had enough of being in hospital and I've had enough of feeling like crap. I've felt like this in the past during long stays in hospital and I know that two and a half weeks is nothing compared to the length of some previous stays but every hospital admittance just chips away at you, knocks a bit more of the fight out of you and throws you three steps backwards. And when it's taken months or even years to make those steps forward its soul destroying. It has been my wedding anniversary this week and I was expecting to spend the night on my own with just a phone call from Hubby. But my parents had the kids for a sleepover and Hubby surprised me by sneaking into hospital at 9pm on his way home from work. Visiting hours finished at 8.30pm but being in my own room we thought we weren't bothering anyone else so we snuggled up on my hospital bed and watched Britain's Got Talent for an hour. As lovely as it was it made me sad that we couldn't be out having a meal or going to the cinema or theatre like other married couples. 

There are lots of things that have come together in the melting pot to make me feel like this. There was the worry of whether the infection had spread to my heart (which it hasn't thank God!), the stress of being away from home and watching Hubby trying to juggle everything whilst lying helpless in a hospital bed, not seeing the kids other than for 2 hours a week, the pain, the exhaustion and the feeling of just being stuck in here. 

The repetition of a hospital day is enough to drive any sane person completely bonkers. You're disturbed at all hours of the day and night which makes it harder to get any sleep than when you have a newborn baby. Here's an list of some of the reasons people have come into my room in the last 24 hours:

▪️to do my observations (blood pressure, temperature, pulse etc)

▪️to administer medication

▪️to put bags of fluids up

▪️to take bags of fluids down

▪️to put bags of antibiotics put up

▪️to take bags of antibiotics down

▪️to take my breakfast/lunch/dinner order

▪️to bring breakfast/lunch/dinner in

▪️to take the breakfast/lunch/dinner tray away

▪️to change the water jugs

▪️to be asked if I want a cuppa

▪️to have the bed made

▪️to have the room cleaned

▪️to have the bins emptied

▪️ to have the bathroom cleaned  

▪️to do MRSA swabs

▪️to weigh me

▪️to do blood tests

▪️to check for pressure sores

▪️to try and cannulate me

▪️to stop the pump from alarming and bleeping (which it has been doing non stop for hours unless I lie as still as a body in the morgue! How dare I want to move my arm or change position?! And the noise just goes on and on and on and grates every last nerve.)

And yes, I know that all the things I've listed above have to happen in order to get me better but it's just relentless. It's like being a cog in a machine that never stops. There's seemingly no care given to whether we sleep or not. Sleep? Sleep is for the well. Hospital patients are hard core and obviously do not need sleep. We can produce samples of bodily fluids at will day or night. We are the gladiators of the NHS! Crikey, listen to me- these are the ramblings of a lunatic and must surely demonstrate my level of sleep deprivation and the effect it's having on me. 

But I can't blame all of my feelings on the hospital. My pouch has been giving me some real gip lately. Actually for months now. Earlier in the year I thought it was pouchitis and had a long course of antibiotics which improved things slightly but not enough to write home about. Imagine having to go to the toilet up to 20 times a day and 6 or 7 times a night. And then try and have a life. You can't. And the reason I know you can't is because I'm trying to do just that. The two just simply aren't compatible. And I'm locked in this cycle of being very unwell and needing to see my consultant at St Marks but being too ill to travel there from Nottingham. So it's been the best part of a year since I've seen my consultant. I feel like I'm a shipwrecked passenger, clinging onto a piece of wreckage, drifting on the ocean and trying to steer it to land whilst all the time hoping and praying that a giant hand will come down from the sky and rescue me from it all. Things are so bad that I'm considering transferring my care completely to Nottingham so that the consultant there can take a look at me and hopefully suggest something to make things better. Or having more surgery to go back to having a Stoma and getting rid of this bloody pouch. 

When the doctors came round yesterday morning and asked how I was this all came tumbling out. I think he was a bit shocked because normally I just say "I'm fine, I'm fine" but yesterday I wasn't feeling fine and I wanted to get it all out. He was a bit shocked in part because he thought I had a Stoma and when I talked about my pouch that's what he thought I was talking about! So once we cleared that up he said that he would talk to the consultant here in Nottingham and see what they could do and get some of my details sent over from St Marks to help with that. 

Brill! I thought. But then when the consultant did his ward round this morning I asked him if I could discuss my pouch with him. He said no because it was too complex a subject and that without the details from St Marks he couldn't possibly pass comment. I explained that I was finding it very difficult to get down to St Marks because of the problems I'm having to which he replied that he had foreseen this last year and had offered to take my care on but I had turned him down so now I was in limbo of my own accord. So I said perhaps it would make more sense for me to move my care to Nottingham but he said I would need to either see/speak to my doctors down there and then they would need to make a written request to Nottingham to take over my care and they would then have to consider whether they would do that given how complex my case was. But I'm sure we would take you on he said and that if I did become a patient up here he would want to involve the surgeons too but that he didn't really see what input he could offer if St Marks can't do anything. He suggested that I contact St Marks while I'm in here as I don't really have anything else to do with my days do I? He was so smug and was clearly loving seeing me grovel. I explained that last year I had a lot going on in my personal life and that I wanted the continuity of staying with St Marks with doctors and nurses that I knew and trusted and that I couldn't have coped with another change. But, I told him, it seems that now might be the right time to move all my care up here especially now that I've spent time on the ward and gotten to know the team and heard such good things about him from the nurses. I was trying to massage his ego but to be honest I feel as though I've been backed into a corner and have no choice other than to become his patient. 

And if I do move my care to Nottingham I will also have to change the company that makes and delivers my TPN medication. It's not just as simple as having another name on the transit van that turns up fortnightly, it would mean having to use a completely different pump at home and other different equipment which I remember being trained on last summer and didn't like which was the final straw that pushed me back to St Marks. So it seems that to save me the trip down to London to see the doctors I'm going to have a number of other changes to get to grips with up here in Nottingham. I'm feeling so down because it just seems that this is going to take months to sort out and in the meantime I'm going to be in limbo exactly as he says. I had hoped that because one of the doctors had said yesterday he was requesting some of my details from St Marks that they might help me while I'm an in patient but he's clearly living up to the promise he made last year to only treat me if I come in as an emergency and only then to patch me up and send me on my merry way. I don't feel like I can go to PALS or anything because no doubt what he's said is the correct procedure for patients wishing to transfer in from another hospital, plus if I get them involved it will only piss him off further. There is no emoji face for how shit I'm feeling right now. 

NB x