Losing the physical self

Today I visited Stoke Mandeville to find her still very angry at everything, including me. The good thing is that she seems to be in less pain than previously. It looks as if they may move her back to the eye ward in the next few days. She hasn’t moved out of bed yet, since her operation. That’s a concern to me as I realise how much this could set her back. She was doing so well improving her independence. How long will it be before she can get moving around again? Will there be any long term ramifications to what has happened? It’s no wonder she is so frustrated. When she fell she was getting help from one nurse and she was very tired. They had been administering they eye drops throughout the nights.

The old woman down the corridor is still screaming out every few minutes. That could happen to any of us, in our lifetime. It’s always a humbling experience coming to hospital; it reminds us of how mortal we are. Stoke Mandeville has the National Spinal Injuries Centre and it’s amazing how many young people, teenagers and 20s, you see in wheelchairs. Some are completely paralyzed, each locked in their own particular battle.

I am speaking to Anita, who is stuck in her hospital bed, as I write this. She is ranting and raving, driven half mad with frustration. She feels trapped in here with a bunch of idiots who broke her leg. She says she is very, very angry. It is hard for me to get her to calm down. I tell her that she won’t get any extra help by shouting at people, but apparently it helps her. She thinks the staff don’t understand that she has brain injury. I don’t know what information they hold on Anita but I wonder if its a full set of records. One condition is treated as the priority, at the moment that is her hip.

She has sudenly screamed out, apparently she went into a spasm. As I watch them administer a bedpan she shouts out in agony. She then gets very angry and shouts at them that they don’t undestand brain injury. She’s difficult for the nurses, she’s hard for me to communicate with but it’s a culmination of everything that has gone before. It’s totally understandable, the way she sees it is that she went into addenbrookes hospital in 2003 as a healthy 38 yr old independant woman and they left her with brain injury, now a period of eye treatment in Stoke Mandaville has resulted in total imobilisation. There are other people down the corridor screaming also. It is a mixed surgical ward and they are very busy.

One of her difficulties today is that she was getting some pain relief from a mechanical drip but she says it came out of her hand at lunchtime and was switched off. It wasn’t put back so it probably means she hasn’t had as much pain relief as she neded. They have just come with some drug, I think it’s called oramol a form of morphine. She asked the nurses, with her usual sarcasm, if they had been to Bolivia to get the drugs, given the time that they took. I end up leaving after argument, I feel I can’t visit her tomorrow and told her, I need time to myself, I don’t feel guilty but I feel sad with myself that I can’t keep up the visits like I used to. At times I feel I am running on empty.

I found Anita in a room amongst the maze of surgical wards at Stoke Mandaville. She had just come round from an operation to put screws and plates in her leg. She had sustained a break in the neck of the femur. Unfortunately I didn’t get to see a doctor to get the full details.

She was probably still affected by lots of drugs, she ranted and raved the whole time I was there. She was very angry because when she sustained the injury she was being transferred to the commode with help from nurse. The nurse couldn’t support her and she fell. She’s blaming the nurses for this major setback to her fight for gaining some independence. Even now it’s clear that the individuals working on Anita are not fully up to speed on her history.

It seems this morning she was left lying in pain for a couple of hours, and she ended up screaming at them. The frustration of her sitation must be sky high. It was like old times again tonight. Anita in pain, waiting for nurses so she can toilet, wires everywhere blood all over the bed. A needle from a tube had come out of her arm and cut her hand.

I think the next few days are going to be very challenging. She is on a busy ward with lots of physical and mental pain and the frustration is building up. It was hard to see her wincing in pain and I left the hospital in my own cocoon. She was getting lots of painkillers but I got the feeling they would never be enough.
No one can ever know what its like to have seen the constant barbaric battering her body has taken over the years.

I received a call from the hospital to say that Anita had fallen during transfering to the commode in her room. Later on, after having an xray, it has emerged that she has broken her hip. She will undergo an operation on it tomorrow.

For her, worse than the pain, would be to be caged in hospital, having even less movement, for a longer period.

I visited anita today in hospital, the doctor thinks she will be in for a few days yet. They have reduced her drops to every hour, so although it’s still chinese water torture, at least she is getting some sleep. It’s obvious the staff here are very efficient and dedicated, they are looking after her very well. She needs to get on top of this eye ulcer before she ends up with too much scarring. She has now got a new mobile so those that want to text her can contact and we will give out her number.

I visited Anita in stoke mandaville hospital tonight. She has sign on the door that warns of barrier care, meaning that they don’t want to pass her eye infections on to others. She has had mrsa previously and that is probably a concern. lt looks like she will be there into next week and she is alreay feeling caged.

Anita had to visit the local hospital again yesterday to keep a check on the state of her eye. Given what happened last week, I was surprised to find that the hospital wanted her admitted to Stoke Mandaville hospital so that they could administer regular eye drops. It’s not clear if her eye is worse or if it’s a case of one doctor being more concerned that others.

On the way taking Anita to Aylesbury the headlights seem to extinguish on a dark country road. Not ideal given that Anita’s eye needed proper attention and as we should know these things are sent to test us. It was difficult to get a mobile signal and when the breakdown guy eventually arrived he had a few problems and for a while it looked like the only option would be to tow us back to our house. Luckily after a couple of hours delay it looks like the problem was only the bulb.

I think she has two ulcrers on the eye and even though the previous scrape for infection proved negative they will probably do another. I don’t know how long she willbe at the hospital but at least I know her eye is getting the best possible treatment.

Once you have survived brain injury you’re open to a whole heap of problems, last week proved that yet again. It was a week that had seen Anita suffer two medical problems, a lot of pain and tons of frustration. It’s not that the NHS is awful or that the staff were anything other than very considerate, maybe it’s the system, but it’s most definitely the brain injury. Read the rest of this entry »