What's worrying me far more, though, is the lady in the side room opposite mine. She regularly uses her call bell and cries for help. Initially the staff did their best, but her requests for help became so regular that yesterday they told her they couldn't help her use a bedpan because it was meal time and they needed to feed other patients. I understand that there are finite resources in every area of the NHS and seemingly infinite demands - and I'm also familiar with staff using the term "buzzer happy" in a dismissive way towards patients. This lady ended up wetting the bed, and subsequently became even more distressed. Since then she's been constantly calling for her son, "James" and becomes increasingly inconsolable every minute that he doesn't come (regardless of visiting hours). When (my) James came to visit he found his name being hysterically called difficult so shut the door of my room to mute it slightly. This is the reaction I'd expect from a person who spends his working life doing mystical things with computers, but I'm finding it incredibly upsetting that this (along with shutting her door) is also the strategy of the nurses and HCAs who spend their working lives looking after vulnerable people. I feel awful, and fairly useless, because I'm not able to get up and help her.
As I've said in previous posts, I'm making slow but steady progress with getting movement and sensation back in my legs, but for each day I take some steps with a frame or try some stairs I spend the next exhausted. I think some people may be being overly optimistic about these signs - sure, they're great news, but it's still going to be many months of intensive rehab and physio before I'm able to walk unassisted for a reasonable amount of time.
Also, my leg wasn't the only change which happened to me when I first became ill. I'm still having difficulties talking - most of the time it's normal, but quite often I say a word that I didn't intend to, or pronounce a word wrong, or mix up letters within a word. Basically, I'm speaking as a person with dyslexia would write. I'm also having to put significantly more effort into planning what I want to say. Once I've got my words straight in my head and start speaking them, I find it difficult to remember them if someone interjects. I'm having some pretty amazing mood swings too (it's too early to say if that's medication effects, a form of grief for my 'old life', or another sign of damage) which are made worse when I get frustrated about not being able to communicate as I used to. The vision in my left eye has also significantly deteriorated - my right eye has taken a few beatings from uveitis over the years so my left eye was always the 'good one', which it isn't any more.
There's a meeting tomorrow (which I'll be attending) to lay out all of my options. Medically, I think there's very little than can be done for me as an inpatient. There are a few lumbar puncture results outstanding, but I feel they could be dealt with on an outpatient basis. I know the team looking after me feel uneasy about discharging a patient with an unknown infection who keeps showing abnormal signs of unknown significance (extremely low BP, VTE, sporadic drowsiness) but it's what I desperately want. My physiotherapists have been pushing me towards having intensive rehabilitation as an inpatient in a specialist neurophysio unit, but I want to discuss the community or outpatient options before I make a choice.
If you read all of that you deserve a gold star!
Again, I'd like to thank people for their messages, but please stop calling me an inspiration, a role model, a hero, or anything similar. I'm not. I'm just doing what any of you would do in my situation, and I have no other option. I only post on here when I'm feeling up to it so the majority of you haven't seen or heard me at my worst: I'm certainly no inspiration then. The real inspirations and heroes are my family, James and my friends - the people who could very easily remove themselves from the situation, but who so far have chosen not to.
Love Emily x
Yes Emily, you are right. The human body has an incredible natural desire to survive and fight back so you are 'just doing what everyone else would do'. The difference is how YOU do it. Informative with a sense of sarcasm, honest with a touch of irony. Everyone that knows you is wondering how they would cope in such a situation and we all take strength in how you are dealing with it.
ReplyDeleteEven whilst laying trapped in your own bed you are worrying and concerning yourself about others. That's what people mean by saying what an inspiration you are, as for a role model, well they obviously haven't seen you run or throw a ball!!!! Love you Em xx