4am thoughts

It’s 4am, I woke up to the usual beep, beep, beep. I do my best to roll over- a failed attempt but I know if get the air out my line I can go back to sleep. But then I see the screen “end of infusion”. It’s 4am in the morning and I am confused. Until I realise that my TPN wasn’t actually changed last night, after being hung there since 8pm the day before. Another mistake to add to the ever growing list. Why wasn’t it changed? Because my Mum and Jamie were so busy trying to comfort me through the pain I was in after having to attempt to flush my JEJ that Mum forgot to remind the nursing staff. They were too busy trying to get a doctor on the ward to get me more pain relief. To then discover I actually in fact had strong pain relief written on my drug card that I could have been given instantly. There goes another mistake.

It shouldn’t be our job to remind the nursing staff of every single thing they have to do, right down to which central line to hook my TPN up to. This is their job, the job they are paid to do. I am under their ‘care’. Well, if this is care I am very worried what a lack of care looks like.

I am reaching a point where this is not only affecting my health, but also the health of the loved ones surrounding me, because they are filled with dread at waking up each morning and hearing what mistake has been made next. This is hospital for crying out loud and a nurse couldn’t even reassure my poor Mum I was safe. When asked outright “is Chloe safe on this ward?” She simply replied “I’m sorry I can’t answer that question.” It fills you with hope and confidence I am receiving the proper care and attention I DESERVE doesn’t it?

So, as a family we have made a decision. We are going home. Forget diagnostics right now, forget curing the problem. Because honestly? This is so complex it might never be cured. For our own sanity and mental health, my family need me in a place they know I am safe from harm, medication errors, poor hygiene, lack of staff knowledge and total breakdown in communication. So that I can be in a place where I feel safe and my anxiety levels are significantly decreased. I place I feel able to be myself, and not be scared of who is going to do something detrimental to my health next. Because that is honestly the point we have reached. I do not feel safe under the care of this hospital, and my family do not feel that I am safe and well treated under the care of this hospital. Going home is not a straight forward procedure right now, but one that somehow we are going to make happen.

This admission not a single thing has been done to help my mobility, and when I think about the fact that I actually cannot walk at all, the sick feeling inside builds up. Whether that is grief for the movement I have lost, anger or sadness I do not quite know. What I do know is that I am in a hospital, and what I have found is that they find it incomprehensible how to treat more than one significant problem in one go. They seem to have no ability to get more than one team together and discuss how my body is working on a whole, instead they focus on one problem (usually nutrition because it is what keeps me alive) and the rest are left to deteriorate. My legs do not move at all anymore. I cannot even wiggle my toes. I try and send the signals but it gets me nowhere. Instead I am in constant agonising pain, especially in my legs but all over. This pain wears me down both physically and emotionally, to the point where I won’t even let my Mum hug me, because I am scared it will hurt too much. To the point where I have to have IV morphine just to move in bed. But the hospital cannot cover ‘rehabilitation physiotherapy’ as an inpatient. This is something that has to be done as an outpatient in the community, and therefore another reason why I need to get home, because the longer my legs are left- the worse they are going to get. The longer the nerves are left without signals and only feeling pain, the more they are going to forget the signals and all hope will be lost.

If I were at home, yes I would be bed bound most the time, but I would have my animals and my family surrounding me, I would have all my belongings and plenty to keep me occupied. My book writing is going incredibly well and I would love to work on that more. But this place drains me of life and energy. I stare at this little room day in and day out. On the rare occasion I am allowed to leave the ward, I dare not in fear that we will miss someone important or a decision being made. We have to be on the ball 24/7. That’s draining in itself.

We are all at a point of disbelief that 1) I am in this situation but 2) that you have to fight SO hard for care. I truly feel for those who don’t have a family to back them up, or the elderly who can’t voice their opinions and pick up on errors in the same way we do.

So, maybe home is the answer. It shouldn’t have to be, but we are human and we need a break.