Losing the physical self

Good Friday the crucifixion of Jesus………

I feel I am letting Howard down by being so down in myself. He tries so hard to help me and I seem to have no enthusiasm for anything. I feel so miserable and sick the whole time, I feel like I am panicking, but nothing ever happens I feel a knot in my stomach the whole time. I hate it that the carers have to come, but the alternative is to manage by myself, which I cannot do. I feel so useless and vulnerable at the moment. Everything tries to batter me down and in my weakened state I cannot cope. I just want to curl up and die, which isn’t me! I had some good news this week from the facial place but even that didn’t cheer me up, I tend to focus on the negative and what I can’t do rather than what I’ve achieved. I feel so battered by life and things are getting worse when in reality they are getting better. I am out of the dreadful Rayners Hedge but I haven’t had formal physiotherapy since I left there, it looks like a cost I will have to pay. We will convert our garage which will give me more independence but I can’t be bothered to get involved though it’s all done to help me. The report from Rayners Hedge annoys me, it makes me out to be socially shy, which isn’t true. They know I go out, I even saw them all twice at the noodle bar. Please help me, I feel so pathetic. I just want to be like I was though I know that is impossible now. I feel so hopeless, I dread the carers coming tomorrow morning; though they are both very nice women who do all they can to help me. I hate that I can’t talk and write effortlessly like I used to. I feel my identity has been taken away and only a shell remains. I focus on not standing well and continue to have high expectations of myself. Even at this stage I am not euphoric that I can stand at all, just that I can’t stand for very long. I feel doomed and nothing is going well though things tick along and life goes on, but I feel it goes on around me and I don’t take part in it. I remember mundane things about our past, trips to Spain and France and miss what I was. I feel so alone, people try to help me but can’t understand the horror I go through. I try to cope but I feel I am failing miserably when I’m like this. I don’t feel very inspirational, I so want to be an inspiration to other people. I feel I just get worse and people will loose any tolerance and sympathy they have for me. I feel I only have myself to blame as I am not reacting very well to my predicament.

I have recently come across the governments ‘National service framework for people with long term conditions’ and discussed it’s implications with someone who was very helpful from the neurological alliance. Our experience’s so far have taught us that having brain injury is not just impossible both physically, mentally and emotionally but many of the procedures you go through and the lack of high standards you see can leave you banging your head against a wall. Therefore any government initiatives in this area are of direct interest to me and Anita. The government is to be applauded for such initiatives however it’s probably only as a result of the pressure brought to bear by organisations such as the neurological alliance.

From our perspective we will have to see how these quality guidelines are implemented in practice! Personally I still feel that the government is long on initiatives but short on the resources to back them up. One particular rant that I have is with regard to the lack of neurophysios in this country. How can you get people to make independent recommendations when they are fully aware of the resource implications. You can read more about the NSF quality requirements.
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As I detailed in a previous post Anita’s neurosurgeon was offering to refer her to a plastic surgeon to potentially help improve the balance of her face. As you can imagine surgery is not exactly top of her wish list at the moment. For a long time we have been aware of Diana Farragher and The Lindens Clinic and the work they do. The surgeon thinks it is probably too far down the line for such treatment so having pestered the NHS about it since last year without any referral we decided to go along and see them ourselves. After running some tests on the activity in Anita�s face which demonstrated activity in various parts of her face they concluded it was definitely worth giving trophic stimulation a try. I must say that they are a smashing bunch of people at the clinic and it was worth going there just for the positive energy they generate. We have experienced too much negativity in Anita’s recovery so far even though she is making good strides! We know that plastic surgery will still be something to think about but we can try this until Anita regains her confidence in operations.

The stimulator pictured has small wires with rounded button like metal pads that are taped to the face. These send electrical signals that stimulate the nerves, helping the muscles. That�s about as much as I know for more information I recommend the website. For Anita it�s something that we will have to do every day. There was a time when Anita had something similar used by a physiotherapist on her shoulder. It actually helped with the shoulder position so we know it can actually do something. With different leads we could also use the stimulator on her knee. It is something we could ask when we see future physiotherapists.

Last night I found a frog in the road, a car came by but incredibly it managed to miss it. There was a river nearby so I picked it up by the leg and threw it into the shallows, feeling good. The incident reminded of me of something I wrote down a long time ago on holiday in Greece. Below is what I wrote.

We are eating cheese pies for lunch on the terrace washing them down with copious amounts of ‘quality’ retsina as Lee Marvin (looking like he did in his cat bellou period) shouts a Kali mera whilst painting the terrace next door. Ironically spaghetti western music blasts from the radio although as far as I am aware he was never in one. Whilst this is going on I spy an ant trying to lift the largest pastry crumb on my plate. Being in ‘Greek mode’ I spend a long time in quiet contemplation watching his every move. The strong meltemi winds are making his cause very difficult so taking pity I break the huge crumb into two. Now totally distracted from the book I was reading I watch the ant as it continues its progress off the plate over the table top and down the table leg. The Greek house we are in is perched from the quiet road by a shear vertical cliff and I watch with amazement as the ant climbs down this 14ft wall to the road. It struggles manfully in the wind on the road one step forward, two back avoiding the cracks. Suddenly I am awakened by the sound of a pick up approaching. My mind quickly calculates the odds for the ant’s survival, it’s a wide road and the ant is tiny. Suddenly, unexpectedly I am left utterly bereft as the left tyre goes clear over the ant.

I start thinking if I hadn’t broken that crumb for him, bought that pie or if the boat trip we should have been on today hadn’t been cancelled due to the wind…………
Appropriately as I force myself to look at the book I was reading the chapter ends with ‘as long as I live,’ he said, ‘I’ll never understand it.’ ‘You never know your luck’.

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!

Now that Anita is home the importance of getting the right amount of physiotherapy for her (amongst other things) is crucial.
We are still awaiting the assessment from Rayner’s Hedge on her therapy needs before the local authority can come up with a treatment plan. Judging by what I have seen of the resources for neurological physiotherapy in Milton Keynes I have severe doubts that Anita will be able to continue her current level of improvements. That frustration has already led me to write a letter to the local MP. In it I have stated our aims:-

1. For Anita to achieve maximum independence.
2. To make life easier for people with brain injury in the future.

The government has spoken of getting brain injured people back to work, promoting independence and is trying to change the culture of brain injury. The definition of rehabilitation is…

Rehabilitation has been described as a process of active change by which a person who has become disabled acquires the knowledge and skills needed for optimum physical, psychological and social function. The aims of rehabilitation services are to help people to maintain their existing roles in the family, at work and in the community, to improve people’s physical functioning and to prevent or minimise loss of function in the future.

From the experience of Anita’s rehabilitation we have come to realise that this definition has not been fully demonstrated in practice. Even worse, that rehabilitation will be further limited by the lack of neurological physiotherapy services in MK. I have included more extracts from the letter in the extended entry.
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It’s 1.45am. Up late, Anita shouting from her downstairs bed. She often wakes up in the night not making sense. She wishes to be sat up for some reason I can’t understand. I think she is only half awake. I notice blood on the pillow and check absurdly that it’s not coming from her brain. It’s just another accidental scratch to add to her bruised and battered body. In the hospital it was all I saw, a line always ran through my head (those broken bones in times of stones�). Like the bruises on her elbows life’s all black & white right now and has been for a while. All fight and toil. I lie awake and think of a photo downstairs, a close up of Anita on the ferry to Patmos, sun low in the sky warming her perfect skin. A settled smile on her lips that I’ll never see again. It doesn’t matter, it’s not something the soul needs, yet why do I still yearn then for a dash of colour.

Today we had a visit to Addenbrookes hospital to talk to the surgeon who was responsible for the original operation, the microvascular decompression that was the start of all Anita’s problems. You would think that any person who has gone through what Anita has would find this a bitter experience. Far from it because Anita is a very special person and is not the type to be resentful, she is very unusual in that respect. We both respect the surgeon and the subsequent operations she had saved her life. The thing she is most angry with is not so much all of her medical problems but the system that’s in place that won’t maximise a person’s recovery, is strewn with difficulties, annoyances and the fact that it costs you a lot of money to be disabled!

It was the first time she was able to speak to him whilst not being ill, so a chance to hear what happened from the horse’s mouth. She was told the operation was successful but the next day, for some unexplainable reason she suffered an unusual cerebellar pontine angle bleed. Anita thinks she has a history of bleeding. The terrible catalogue of problems that subsequently followed were only a natural set of events. She was also told that plastic surgery would be the best thing for her facial palsy and that trophic stimulation would not work due to the nerve damage. He felt that it wasn’t good that she had come out of therapy with nothing in place because it’s possible she could go backwards. There was also no reason that her progress couldn’t continue although after 2 years it’s possible it could plateau. I have heard this previously and also that people often see increasing improvements over the first 9 months then go into a stage of slow progress. In watching Anita I had never seen anything except a consistent slow recovery although presently without any exercises there may be non at all.

I had recently seen Anita’s medical records and was surprised to find that the surgeon was only the assistant in Anita’s microvascular decompression operation, apparently it was a chance for another to learn his trade. I did question him about this because I was concerned about the experience of the person doing the op but he said it’s not unusual and that it is mentioned in the consent form you sign. The records also show a meeting with him at 7.45 on the morning of the operation where he explained the risks. We could not remember such a meeting although we remember that another surgeon explained them to us the night before and he would talk to either of the surgeon’s doing the OP at some point.

For me it was very strange going back to a place where I feel I had spent a lifetime.