Losing the physical self

Anita wanted me to provide everyone with an update on her situation and she says that she will reply to all the emails as soon as she can.
It is now November 2006 and it’s past the 3 year anniversary of Anita’s surgery. Progress is slow but she IS making progress. She has been discharded from the rehabilitation facility and has moved in with her mum and dad up in the Lake District (they only have dialup for internet access so you guys may have to wait a while for a response to an email!)
Although a myriad of things have happened over the last 12 months, Anita is being extremely positive. She now has phisio 3 times a week, plus speach therapy, and occupational therapy in the form of my mum who is keeping Anita busy in the kitchen!
On a side note: Anita wanted me to let everyone know that her and Howard are no longer together and they are getting divorced. Anita also wanted me to let everyone know that she really appreicates ALL the support that has flooded in over the last three years – it mean so much to all of us. Thank you!
I will try and keep everyone posted on what is happening with Anita and when she finally gets ‘highspeed’ she can update the sight herself.

There was a meeting today with various professionals from Milton Keynes and the staff at the hospital. We joined the meeting after an initial discussion to consider the next steps for Anita were being considered. She expressed her desire, quite strongly in the meeting, that she thinks when she comes home the physio will be reduced to an unacceptable level. Because of what she has been through before, she feels she will be let down when she returns home. There are no available spaces in Oxford and the talk is of her returning home with support. The outcome was that a well considered plan needs to be drawn up for her return, one that will satisfy all involved. In the past I have been dissapointed with the full needs assessment Anita received. Particularly when you read what the governments has set out in the National service framework for people with long term conditions. You can read about that in a previous post. Quality requirement 1 states:-

A person-centred service. People with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

Anita has recently had another home visit and the natural process for her coming home is begining. This stage has had a huge impact on Anita’s mood, whenever she considers home she faces many uncomfortable issues. She doesn’t want to be baby sat, dressed, etc, she wants to feel that she can have a more independent future. The dificulties of coping with this life change can make her difficult to talk to and she is not able to move on. I have been trying to get her to accept certain things, I have always been honest but that can sometimes make me the enemy.

Didn’t sleep last night even though I had a whole hospital bungalow to myself. Anita lies there, body bloated, tongue lolled out, urine dark. I notice she has still got her wedding ring on. Her blood pressure is all over the place, her tongue is swollen out but I can’t help feeling she is sticking out to the world.

Listening to Johnny Cash, not my usual fare but very fitting.

I hurt myself today to see if I still feel
I focus on the pain the only thing that’s real
the needle tears a hole the old familiar sting
try to kill it all away but I remember everything
what have I become my sweetest friend
everyone I know goes away in the end

The absolute worst thing you can do in intensive care is sit and settle to the beat of the machines. Hanging your emotions on the rythmes and sounds. You have to try and let it all unfold naturally and wait for official news from the Doctors. It’s easy to succumb to the all powerful rollercoaster.

This time around it feels even harder than the last. Back then my mind and love was pure, a settled fate awaited. Unsulled by the ambiguities of life. She wants to be at peace yet the wonders of modern medicine won’t allow it. I know Anita is more distressed awake than unconcious therefore I beg the staff to release her. She has taken enough drugs, however the combination is unpredictable. The posibility of further damage hangs in the air like a radioactive cloud.

10.40pm Anita has opened her eyes, it was all calm until now. As she awoke I felt the sharpest pain for her I have ever felt, her wish is denied and she could soon be suffering again. I go back to the bungalow and collapse into a dreamless sleep.

There has been more depression this week. I came downstairs one morning this week to find an ambulance had arrived. Anita was so low, like she had almost completely given up. Her whole mind set had become exhausted. So much so that the carer was concerned enough to dial 999. After a long examination from a very nice paramedic she was diagnosed depressed, but could have had a temperature. She was offered two options, go to the hospital to get further help, or get checked out by the GP. We decided on the GP but I had to get Anita out of bed and take her down there, they were to short staffed to come out.

The thing is that all the options we have these days almost seem pointless. You know what the end result will be. She was due for an increase in her anti-depressant medication. The GP visit has at least speeded things up because she needed various tests before any increased medication.

She was so down at rehab yesterday that there have been more discussions with the psychologist, psychiatric nurse and GP. The option, if she loses it, is to take her down to A&E, leading to something that I feel won’t help at all. She has now also been given some Diazepam medication to try to give her some relief from anxiety.

You may have noticed that it has been a long time since Anita has posted to the website. She has been through a period of horrific depression and I think she has had no drive to do anything. Over the last few days she has shown signs of becoming a little brighter after this difficult period. Hopefully the cycle of depression that we have seen has now come to an up state. I think what we are dealing with is a huge reactive depression. No matter what improvements can be made, at some point she has to accept the way she is. So far she has been totally unable to accept any of the changes she has to deal with. She is a strong individual who treasures her independence, so there is still a long way to go. She only really shows positivity after some improvements to her physical state have been demonstrated.

Some of the things that make Anita special are now making things very difficult. It has been the mental side of dealing with her in this state that has caused me alot of anguish. The constant conversations I have had with her recently are starting to take there toll on my own mental health. There has been the odd occassion recently when frustration has led to me shouting out my frustrations. On these occassions I am not the best person to be looking after Anita. The more I was drawn in to her own depression, and the more I discussed it with her, the more I have started to feel ill. From a selfish point of view I have to try to do things that keep me holding everything together. It’s hard for anyone to understand just how much all of this can affect you unless you have been through it. It’s like building blocks of bad stuff that started with her time in hospital and those blocks continue to be built upon and eventually could topple.

I have always liked the sea and starfish, so this parable was bound to appeal on one front or the other. I heard it on Radio 2 one morning ages ago, done my exercises and waiting for my Carers.

An old man is walking down the shoreline, when he see’s a young boy in front of him bending down and throwing something into the sea. He runs to see what the boy is doing and see’s that loads of starfish had been washed up by the tide and the boy was throwing them back. There were many starfish, so the old man asked the boy why it mattered, as he couldn’t throw all the starfish back into the sea, so the boy looked down at the starfish in his hand, threw it back and said,’ It mattered to that one.’

It does matter, if only one person gets help from this website, it will have served its purpose!

Well, the ‘depression’ has gone, which is a relief as I thought I was stuck with it, it started to go on Wednesday night, but lasted for almost four weeks, which is the longest it has ever lasted and was awful for everyone concerned. I get suicidal, everything is hopeless and I am in a nightmare and this is Hell, then I am fine again! Very weird, but I think I have a chemical imbalance in my brain that’s making me like this. My Doctor is changing my anti-depressants and I am weaning myself off Citalopram at the moment, but that will take about six weeks and ironically, this could make me more depressed!

I went to the local hospital by myself on Thursday, to the audiology clinic. I have constant tinnitus, accompanied by a ‘whooshing’ sound in my left ear and I am slightly deaf in both ears. I was told that everyone has tinnitus but only one in six people hear it, the secret is to put it ‘back into its box’ where it belongs, so you don’t hear it anymore! The brain apparently hates silence and will always seek out any sound. There are various techniques I can use to get rid of the tinnitus.I cut out caffeine, so no chocolate for me! Have the radio or something similar, on at all times so I hear something other than the tinnitus and not to sit in silence. I must also perform relaxation techniques and give other reasons to myself for the tinnitus, to con my brain into thinking there’s another reason for the noise and hopefully the tinnitus will stop! So I am trying all these things! Tinnitus is the least of my problems, but what have I got to lose?

I am fine at the moment and progressing nicely, but I know when the ‘depression’ strikes it will be all doom and gloom again! My balance, which is my biggest problem, is much better and I walk, well stagger, in the parallel bars and walking frame. I also stand a lot in the standing frame and a lot of work is done on my left arm in the hope it will become more flexible. I hope to go swimming, as I think the water will support my limbs, but that is yet to be organised.

I have received a few e-mails from various people who have seen this website and they cheer me up considerably. One of the worst things about brain injury is the loneliness, you feel you are the only person dealing with this shit and of course you aren’t. Although a lot of these stories are very sad, it makes me proud that these people are fighting on, you can’t let brain injury beat you, though it will try! I type this on the patio in the garden with the radio on in the background and Ronan Keating has just come on and in his words, Life Is A Roller coaster You Just Gotta Ride It!

As a designer I couldn’t resist putting Anita’s logo on to a t-shirt. It’s a fairly easy thing to do with an inkjet printer and iron on transfer sheets. It demonstrates the power of the logo in action. I have also done some business cards for her to help people remember the web address. The other image shows a card I designed which was sent as a thank you to the hospitals she was in. At the time I found a suitable poem about nursing that someone had written, the author is unknown.

Calmly serene, they impart repose,
to all those in suffering severe.
Sure devotion and sense of purpose,
when others fail, they still persevere.
When illness descends to dark despair,
sad spirits rise to their friendly smile.
In times of need they are always there,
the patient�s worst fears to reconcile.
With the staunchest hope and self-belief,
they administer to all in need.
And to those in pain they bring relief;
this caring, tolerant, selfless breed.

The merchandise can be bought here.

Anita was up all night throwing up. It was like chinese water torture, you would nod off then she would be throwing up again. Sick also makes you feel very nauseous also. She gets like this every so often and once it comes on it seems to last for around 12 hours. I was only telling the surgeon the other day that she hadn’t had it this year. It’s something to do with motion/co-ordination thing in her head. As sods law would have it she was due first for a blood test then later today she was going to see the eye specialist about her squint. These appointments (like everything) are so important for Anita. We now have to re-arrange it which means I will have to take another day off work along with all the other numerous hospital appointments. The nurse came out couldn’t get blood from her vein which means that will also be re-arranged. Sometimes it’s all these little things that make you go argh! argh! argh!.

I think the sickness could have been caused by looking up close to a giant screen in the cinema. If you are in a wheelchair you have to sit near the front close to the screen. We went to see Sideways which I enjoyed as it’s very much my kind of film. It feels as if we are being penalised for actually enjoying ourselves!

I have been depressed now for about three weeks and left the rehabilitation hospital as I feared for my mental health. It’s bad enough dealing with the physical effects of brain injury without going mad as well! RH wanted me to accept my limitations and get on with life, but I was not happy with accepting the way I was and felt I could improve. I have a lot to deal with and worked on my own face, voice, writing arm and leg at RH and can continue at home, although my return hasn’t been easy. I am sure RH thought I was in denial because I refused to accept the way I was, but that isn’t the case, I just want the chance to push myself and continue to improve in the same slow way as always. I don’t expect to wake up one morning and run up the Eiger, but I do expect those rehabilitating me to be positive in their outlook. Hope and belief are more important to brain injured patients than supposed realism.

So now I wait for RH to decide what my needs are. I am quite happy to wait as I know I forced their hand by leaving weeks earlier, but I can’t help but be worried. I fear RH will recommend what they know Milton Keynes can provide, not necessarily what I need! I admit I have a vested interest in getting out of this state quickly if possible and am not happy pottering along like this because the system thinks it knows how to treat me.

As well as not providing me with enough physiotherapy I resent having to pay for my own downstairs bathroom and bedroom! It will probably cost over £15k and there are lots of other things I will have to pay for that I wouldn’t have done if I wasn’t brain injured! We seem to be encouraged to pay through the nose because I have been unlucky enough to be brain injured. I don’t think enough is done for brain injured people, who are slotted in to the area of disability they fit rather that been seen as individuals who are recovering, however slowly!