John Fish B.Sc.
Publishers of Tenby in Wales (UK)
ROWSE LITERARY AGENCY Strange New World: by Jill Hodges
Coping with Brain Damage
Biographical Statement My name is Jill Hodges I am 43 years old. I have lived with my partner Jaci for 11 years in the town of Monmouth South Wales. My parents brought me up in the valleys of south Wales, although my father is from Oxford he met my mother and stayed in Wales. I am a well-travelled individual and after leaving school ran away to Kenya to get away from a despot father. I continued to travel around various countries until I returned to the UK around 1984. Education: I gained a 2:1 Major/Minor Honours degree at the University of Glamorgan in 2000 in Psychology and Astronomy. I have researched a variety of subjects that include: Obesity, Alternative evolutionary theories, Auditory Illusions and speech patterns, and Space Anomalies. My present research is in the field of Sumerian culture and biblical anomalies and enigmas. Before the accident I worked for the mental health department of County Hall Cardiff City Council. I was due to take a Masters in Applied psychology in the October but I fell from a first floor building some 20 feet down and ruined any chance of gaining it. After four years of trying to regain basic abilities such as walking, feeding myself etc, I decided to document my life in the hope that others might gain from the experience and could use the coping strategies I have developed myself. My memory is still poor; I find it difficult to function under certain conditions that others find second nature to cope with. Fact is I do not really understand fully your instructions to allow the submission of this work, so I do apologise if it is not correct.
Synopsis This work takes a lighthearted journey into the serious problems of brain injury and the problems faced by the patient and their families. It deals with day to day accounts of the strange new world that having brain injury places the individual in and also deals with the coping strategies that can be developed to help an individual offering help and encouragement. The symptoms addressed here are Temporal lobe epilepsy, derealsiation and depersonalisation to name a few and describes in my own words how the world now looks, feels and how the external world now affects me. So who might benefit from reading this work? Why is this work special?
Sample
The beginning I woke up in a semi dark room with lights and bleeping sounds, in my mind only seconds before I had been standing at the top of an outside fire escape; it had been a good day I had spent with friends so where was I now? The topic of conversation over a game of chess that evening had been our favourite, where did the human race come from, were we left here by another race of beings and deep cosmological questions, big bang theories and does god exist or is she/he just a fictional character developed over the years to make humans think that sins are there to be forgiven. (I know we are sad but there you are we enjoy a good debate.) I could only move my eyes at this point and my vision spun me around for a few seconds before I could focus on anything and if I leaned to either side I spun like a top. (This I now know was due to Occipital lobe damage.) All I could see when I did stop spinning was tubes and lights, which I may point out looked the size of fire hoses. My mind started to wander and then it came to a hell of a conclusion. That's it I had been abducted by aliens. I can't tell you the panic that I felt on realising my dilemma then I started to struggle, suddenly I was surrounded by beings then it went dark. Well as you can guess I had not been abducted at all, but I had fallen from an outside fire escape come entrance, which just happened to be an old metal one god knows how many feet up and knocked myself out in the process. I sustained a three quarter fracture to the skull and lost copious amounts of spinal fluid, which probably did not help the old grey matter one bit as once emptied of spinal fluid my poor old brain would be left to bounce back and forth something like a lose egg in a cake tin. I was left, apparently, with damage to a few areas of the brain, some that deals with sorting out incoming information and other areas that deal with balance and vision among other things. My perception of the world had changed, but still at that point I didn't know. I had not realised also that I was paralysed down the one side of my face a type of palsy from the fall. I had been drugged up to the eyeballs and could only grunt at that point. Trying to make sense of what was going on was taxing and hurting my brain to think. It was quite a while before I became aware of what people were saying to me as I had such a problem understanding exactly what they were saying. Their speech sounded foreign and not at all like English. At that time I just took it to be an alien speech code as I was still under the impression that I had been abducted by another species from afar, that is why it was no surprise that I understood not a thing that was said. And why not run with this theory? My change of vision or perception bolstered this thought. Whoever was speaking to me looked pretty weird? For example I could not make any distinct characteristics such as a nose or mouth so I had assumed that telepathy had been used to communicate. Looking back at the whole scenario it leaves little wonder why I signed myself out as soon as I could. I lay there trying to think, trying to place my thoughts in order. The first thing I knew I should not do was panic I told myself to stay calm and play it by ear, after all I did not know how these beings would act, and then suddenly it went dark. When I next became aware of someone or something next to me I noticed that I had hold of something that was over my mouth. I was trying to tug it away, then whoever, (or whatever), was next to me was trying to restrain me, I pulled at whatever it was, and then it went dark again. I now know that I had been on a ventilator and had been giving staff at the ICU a right old time, so they sedated me quite a lot in order to stop me from pulling out pipes, drips and whatever else I could get my hands on. I felt better the next time I woke as the ventilator had been removed, however I still assumed that my theory was correct and was quite confused when daylight came as nothing I had ever seen before was right there in front of me and I still feel like it today two years on but on a much smaller scale. I still suffer from vertigo even today but with some easy exercises it stops for a few weeks. I remember hearing other people's voices, the familiar sounds of human speech. I remember thinking that they too had been taken by aliens and even more confused when my partner turned up to visit. In fact I was beginning to think that everyone had a part to play in this abduction theory. Perhaps they were cloned or brain washed. (Oh my God!) Acceptance and trust, apart from a cool head, is something any one in this situation must have, but how and when you are ready to accept what you are being told and trust the right people is very hard and takes an incredible amount of time patience and energy. Imagine waking up in daylight to see your ex-partner walking towards you as you lay in bed. You know (think) you have not been involved for two or three years. Then bit by bit nothing makes sense. In reality you are told that you had spent at the most a week apart, most confusing and that seven years together was more like it, not three at all . The flood of questions in my mind echoed from ear to ear. Did the aliens really get me? Are these people real? What planet am I on and how the hell did I get here? And why the hell me of all people? The question of why me only began to open up once I had been taken back home. I had wandered about the house and found a computer. I was told that it was mine and that I had bought it when I did my degree, to which I asked, what bloody degree? I could not remember doing a degree. I found weeks later that I could turn the computer on. I sat looking through files and documents that I had no idea about. I opened some files and to my utter surprise found that I had a degree in Psychology with Astronomy and space science at Glamorgan University. (Wow... I wonder how I did that.) To my amazement I was shown a video of my graduation in the year 2000. I sat there agog, I was speechless and bewildered. The person wearing the cap and gown looked like me, but was it really? I felt that it was not. I could not believe my eyes. Even today I still wonder if these are false memories planted in my head, but why that would have been done I really have no idea. The weird thing is I feel homesick and I want to go home, but where do I go? Do I really belong here on this strange world? (Reading back over this work, as I am now, a year on I realise now that I am stuck here. Not much has changed in the emotional department I still feel homesick (12/1204) and nothing feels real. My feet and hands feel as if they belong to someone else and so does my face somehow, Today it is not a question of what I see per se but of what I feel. I really do not know if something is real because I do not get the feelings that it is. Forgive the vagueness of my explanations but this is new to me also. The nearest analogy that could illustrate this feeling is like living inside a video game, anything could happen at any time weird monster machines lunge toward me from out of a wall. Lucky for me, I have had my partner with me on many occasions who has reassured me, for example, that the coke vender at Gloucester Royal wishes me no harm and it is plugged into the wall socket so, no it can not go running about after me. One particular event at the hospital involved such a machine. We had been to the Neurology department, on leaving we had to pass through a reception area where a Coke machine stood at the end right by the exit, I had not encountered it on the way in as it was behind me and out of view plus I had not turned around. On the way back out however things took a turn for the worse. Suddenly I saw it. It seemed to be a swirling mass of colour with long trailing arms flowing out toward me, and boy did I panic. Then, unable to move I froze to the spot pointing and blubbering about some strange creature. Logic and reason had vacated my brain and so I was half dragged half coaxed down toward the beastie with the waving arms and swirling things, I felt awkward and embarrassed to find out that it was in fact just a coke vendor. It had taken sometime to be convinced and I was showing physical signs of anxiety I was starting to hyperventilate and sweating to the point that my shirt was stuck to my back. I was scared for my partner, myself and all the other people in the room. I had felt helpless and still remember the fear in me, however, I have no clear recollection about the event. The recollection that I have is only the feeling, not as one may expect memories to be. For example when one thinks of a white sandy beach and a clear blue sky images appear in the minds eye. In my case I remember only the feelings that I had experienced I have no images of what actually took place, just tabular Rasa (a blank slate). I tend to think that this type of phenomenon could be a knowledge based attempt by the brain to understand something of which it has no meaning for. By this I mean, if I had been a god fearing individual would I have seen a different pattern such as a demon if I had sinned or even a divine entity within the mish mash of colour that I perceived as a strange creature. Who knows? When our brains pick up on incoming information it automatically looks for a familiar pattern to help it to understand what it is looking at. This is why some people when looking at the patterns on their curtains and carpets they see faces and other familiar shapes appear. Another example of this is cloud formations that look like ships or sheep. If ships had not been invented, then we would not recognise the ship like shape in the cloud formation. From psychological studies of infants and neo-natal studies, it has been found that our brains are genetically pre-programmed to look for a face. People will tend to see, in other things, familiar patterns and the brain will pick out a memory that will be the next best fit, and my brain picked out an alien substitute image because my visual cortex and my eyes had both deceived my memory due to the injury my brain could not make out the information from the external world. Mmm, wonderful. This problem on its own is, in my opinion a bugger to deal with, however mix it up with balance problems and you have another problem again but that is another chapter and best kept for later. Depersonalisation/reality displacement. I searched for information about this disorder after being advised that the feelings that I were having is possibly due to reality displacement. I asked my GP and he suggested that it may be referred to as reality displacement or some type of depersonalisation disorder quiet often associated with serious head trauma. At first I found very little under that particular heading. It was only by chance that I found a link to a website called depersonalisation.com. Perhaps it helps that I have a little knowledge of the psychological and physiological workings of the brain, then again maybe not. I am not quite sure if its good thing as ignorance seems blissful sometimes. I exhaust myself searching for an answer in the hope that everything will turn out alright, but it is a long hard struggle and I feel the effects badly. I think it is harder to accept that I have had a brain injury rather than have been abducted and thrown into another universe because there is hope that one day I will escape and arrive back home, but if this is all due to brain injury I feel I am stuck with it. Does that make sense? This scenario reminds me of the drunk searching for dropped keys outside under a lamppost, even though the keys may have been dropped elsewhere it remains a more easier task to search under the light than in the dark, even though that may not be where the keys are. Get it? I feel like a fish out of water and I feel the need to be with my own kind, perhaps as time goes on it will become easier to cope with I really do not know at this stage, perhaps I am dreaming lets hope that I wake real soon. Micro lapses. Accompanying this reality displacement and adding to the problem, is what I can only describe as micro time displacements. To illustrate, my partner and I had to visit the hypermarket at Cardiff gate. After travelling about fifteen miles I became aware that I did not know where we were, I had no recollection of getting into the vehicle let alone leaving the house. I tend to think that these micro time lapses are due to a backlog of incoming information being sorted in my brain as it seems to happen when I am in a situation where there are various types of stimuli an example of such a time is when I was taken up town shopping. It was a sunny day; there were endless crowds of people, there were streams of traffic, noise and bright sunlight and shadows. Shadows cause many problems. As any paint artist knows, if you want to illustrate depth you need dark colours. Shadows usually mean stop there is a hole. In my case I cannot afford to make any mistakes, if I fall down a hole I'm not going to be a happy bunny, so what do I do? Quite simply I stop or step over most shadows, which I am sure amuses most other pedestrians but it jars my bones when I step down or up a curb that is not here. On another occasion on a quiet road I was just about to step out into the road when a bird flew overhead, the shadow that it cast ran in front of me causing me to stall and falter. If a car had been coming I could have been hit. Edges are a problem sometimes. Glass I tend to miss completely so large windows I tend to head butt whilst out window-shopping. Usually these days I get around that problem by surreptitiously holding my arm out at waist level while moving towards a shop window. When my hand touches it I stop walking towards it. Easy when you know how, not so easy when you have someone talking to you though because you either miss all that you are being told or you hit the window or kick your foot into the wall below the window. Crossing the road is a nightmare. I can't really judge distances and often walk into moving vehicles usually the back end of them, as I get too close sometimes and just clip them with my arm although I have been known to just stop and stand in the way, this causes drivers to shout and beep at me but I just shuffle off and bump into something else as I get more confused. It is rare that I venture out alone and must trust the judgement of others. This can be very distressing at times I have come to trust my partner implicitly but not many other people. Actually the problem of crossing the road is a product of a few symptoms and as time goes on I am sure that I will improve as my balance and visual impairment improves. The foremost worry is that I just cannot make my mind up if what I am seeing is true or false far away or near. The feeling that something is near and something is far away feels the same now so I have to judge by the size of things and how quickly they change size. To put it another way, if the car seems big I stay on the pavement, if its small in size I run. On other occasions we might meet people that want to stop and talk, this irritates me beyond belief because sometimes I feel they are not familiar to me and even worse if one person changes place for another, i.e. they swap places whilst talking to me and I get distracted, I tend to think that the one I was looking at has changed into someone else, and that is scary. What is annoying is that people think that because I no longer have the palsy, I am fine and back to my normal self. I know I am not, I am aware of changes although I find difficulty in explaining all of them. Another thing about conversing with people is that I find it hard to keep up with what is being said and often people talk over me as I take so long to answer. Sometimes people speak for me and finish of sentences. Often the opposite of what I mean. A nice little example of how it sometimes goes for me is the little story of three old women sitting on a bench outside: First old biddy: Isn't it windy? Second old biddy: No, it's Thursday. Third old biddy: So am I lets have a cup of tea! I have come to realise that if I close my eyes I can take in a bit more and get it right, that brings problems within itself as it is considered rude to close one's eyes whilst being spoken too, and it is dangerous when walking and talking. Unlike the old biddies I am not deaf my hearing is finely tuned and if anything is hypersensitive to sounds. You may be surprised to find out that people tend to over emphasize words as they would to a deaf individual, this I do tend to over look, as it is sometimes amusing. I sometimes feel that I am like a bad egg, undetected on the outside and rotten inside, you can't tell until you see inside it. It is frustrating and infuriating and just to recap nothing seems real, sounds and smells are different sometimes to the extreme, I have this constant feeling that I should be somewhere else, I try to believe what people are telling me but there always seems to be doubt in my mind as to their veracity. Is there a plot? Am I being controlled by something else? Are these people or a figment of my reality? I can't make up my mind on many issues. And the noises in my head are awfully distracting as well as annoying. Even going to the toilet and taking a bath has its problems. I mean to say what if I think I'm in the loo and I'm not? What if I am sat on a shop display in B&Q? (Stop giggling!) Bathing has always been fun for me it is way to relax and unwind and play with our animals with the bubbles etc. Now I dread the thought of getting in, as it feels drastically unlike it did before. The bath feels hard and cold against my skin and the water around me makes me gasp for air. Showering is not so much a problem so its not like I have problems with hygiene as I will shower, but I do have an awful problem staying in our bathroom upstairs, again I have no idea why. Other things that make me uncomfortable are going up our stairway as well as being in the upstairs bathroom. I find it difficult not to sit on the stairs and this is something that annoys me and I cannot seem to stop it happening, for no reason at all I will suddenly get a burning desire to sit on the stairs. I throw my hands up in despair, why do I do these things? I also have bouts of uncontrollable laughter. This has and could lead to all sorts of problems as it is difficult to contain. It happens for no reason and is embarrassing especially in a crowded place or inappropriate times. I find it impossible to control it and become irritating after an hour or so. Getting back to the sitting on the stairs, I would not mind if I was sat there doing something useful or even trying to read but I just sit and stare listening to the noises in my head. Another strange thing is that I keep looking for our kitchen light switch in another place. It is as if I am expecting it to be on another wall, very strange do you not think? I keep wrenching our kitchen taps the wrong way so they become jammed off, I can not seem to remember which is the correct way it is to turn them on or off. I might expect to do this if I had just moved house perhaps but not after living in the same place for years. Parallel universe syndrome or is it this dreaded symptom? I am beginning to wonder as many strange things are beginning to emerge as time goes on in this strange new world I seem to have woken up in, or perhaps I am dreaming, who knows? For a very long time the only real link with reality I had was old pictures and the way that our animals reacted to me, still with the pictures I have this nagging doubt in my mind that it is not really me in the picture even though I am reassured by friends and family that it is me. People I had once worked with I no longer know, again it is not so much what I see but the feelings I have about them and now to combat remembering new names I have to constantly go over them in my mind and hope that I remember the face too. Some time this week I went for a stroll through the park with our two dogs I was feeling rather tired and suddenly forgot about the dogs when I became interested in a bird that had flown low passed my head and swooped up into a tree. After a few seconds in my time I walked off. I looked about saw no dogs so I thought I had been to the shop, on realising that I had no shopping I thought it strange that I was in the park without the dogs as I did not have a need to be where I was without dogs or shopping as all my other places to visit were in the other direction. If it was not for the fact that a neighbour had been watching me for twenty minutes and knew the dogs had wandered off I would have been stood there still pondering my next move. She walked over and asked if I was okay she brought the dogs with her, they had made their way to her house sniffing about in the grass. Most people that know me are very kind in that respect they keep an eye out for me and that is nice to know. However people that do not know me tend to think I am intoxicated or just give me a funny look. I used to be quite active and most of my activities now are confined to safe places and places I can be escorted. I no longer fish as it is near water and there is the possibility that I may fall in have a seizure and drown. I keep myself amused by logging new species of birds, trees and insects that I have not seen before, even though I seem to have information about their habitat and general bits of information which I recall after finding out what it is that I am seeing. For example, I know that a butterfly lays eggs on our cabbage plants, they do not bite or sting but I cannot remember seeing one before now, but I must have seen one before. Trees look so different to anything that I have ever seen before and I love to watch them. Flowers look bright and even rain holds me captive for hours on end. The floor feels strange beneath my feet, if I take off my shoes it feels even stranger just as if the ground is moving around my feet. It is real difficult to explain but discovering this sensation was and still is such a big deal to me even today. Everything feels different, it looks different and feels strange. I was most amused by the feeling I got from chewing bubblegum , and I have to say that I felt as if it was chewing me, so I have not had it since. I have developed a strange desire to taste things these days but it is the texture that interests me the most rather than the taste. It has been explained to me that this could be dangerous, I try to resist the urge to taste things but sometimes I forget and have a mini lecture from Jaci about the dangers of tasting things from plants and why I should not pick things up from the floor. I have to admit that I enjoy chewing crunchy textures and have taken a liking to hot and cold foods together, the variation of hot and cold is an enjoyable experience, something I have not known before. (How bizarre...) Daisies are nice to suck, I have an endless supply over the park but once again I have been warned by Jaci that dogs pee on flowers. (Yuk!) I went through a phase of munching berries from the garden, much to the horror of Jaci and her daughter who lives next door to us. When I look at trees I have the burning desire to eat a bit if the bark. It seems so delicious and makes me salivate. I like licking rain drops from windows too, the taste of the rain water and its soft texture feels so good against the glass I get pleasure from it. Again Jaci informs me that flies land on windows so, I have been banned from licking the windows and also it makes the glass smeary. I enjoy smelling new things too, I love the smell on cats, dogs, petrol and creosote and plastic bin liners. At first I thought that I had lost my sense of smell, however it has altered. Eggs smell like onions and so do many other things. Trying to keep new memories in my head is taxing although I am doing well on that score I tend to become confused when the external stimuli is too much for me. But tasting things is the best way for me to find out what something is, I can smell it and taste it and lock its texture, colour and scent into my brain and recall it at a later date, but that is not always the case as I found with beetroot, beetroot to me is tasteless, scentless and looks a funny colour as if it is not devised for easting at all. It is all very new and the world is full of new things for me to discover what ever way I do it, I will have fun. I spy This game is a good one for focusing on independent items that tend to blend in to other things. However, do not try this in a supermarket, as it will make you feel ill. A major problem with super markets is the many different types of lighting and noises, people and different temperatures. Only recently have I noticed how cold it is in the isles containing butter and cheese etc. Okay so what? It is cold in all cold storage isles, ah yes but do we really notice the difference, yes we do but I notice it to the point where I stop and cant focus on anything else but escaping from it. This means a mad dash to get my mission done. The utter loathing I feel for those particular isles is extremely uncomfortable and for some reason I think of it as my fear factor challenge. Lights are another problem. The lighting in supermarkets are designed not only to let you see, designer lights are specialised to create an environment that will influence the shopper into purchasing more as are the packaging and structure of the store itself. So shadows and lights again, lots and lots of multi-coloured packets and tins and shining swinging bits and bobs come shooting around my head as I blunder and stumble into shopping carts and other things that come at me ninety to the dozen. How do I cope? I just go slowly and let people dodge around me apologising as I go. It is all good fun I suppose, but when it becomes just too much, I retreat to the safety of the car and sit in silence or both Jaci and I leave the shopping until another day and just go home. New adventures New tastes One positive thing about all this is that I have had more new experiences than I have had in a while. I have also found that many things I did enjoy I now detest or am not bothered about. It seems odd that I do not know if I like certain things such as my dilemma of if I liked malt drinks or cocoa, I can never get it right it seems so I just ask over and over again, but I do forget and I do not know how to stop this other than write my opinion on my arm in pen. I have been told that I do not like it, but while shopping I will insist that we buy both just to try which one I like, but I do not like either and at one time we had two lots of each in the bin, as they were not used. There other such stories as you can imagine. Such as thinking that you like Marmite only to find that you absolutely hate it Yuk! It does seem funny though that some things I know I like and others I seem to have lost the plot with. Pickled beetroot is another strange thing I have developed a taste for, I have astounded many with this new trick of mine as everyone has been telling me that I hated it before. I cannot argue with them as I really have no idea if I did or did not, very peculiar. I may add at this point that I am getting better at trusting my partner's judgements on things that I am not sure about. I have too, else our kitchen would be full of things I do not like. Mmm not good Taste and smell Since the accident my taste and smell has altered drastically. This is a problem when cooking, as I cannot taste or smell it however this affects others who have to endure my cooking, as I cannot taste it. I cannot say that I have no sense of smell or taste because I have it is just different. I smell onions from many types of food, even things that one might not connect, such as onion odours coming from chicken pork and eggs. Could it be that the reason I seem not to recognise some people is that my smell leads me to believe that they are not who they say they are? After all smell is important in relationships with people, if they don't smell right but they look familiar it is bound to be confusing I should think. (Or is that a bit deep?) Cooking with chillies or curry tends to be a bit of a shocker. I know when it is hot as the back of my head sweats and my partner runs out of the room to get water. I am not usually allowed to cook unattended, as I tend to forget what is happening next and wander off and do something else. Examples of this behaviour is forgetting that the bath is running, that the dogs are outside, I have no socks on or there is food cooking and I have been known to leave the oven on over night and most annoyingly I find half consumed cups of tea around the house, obviously me as I am the only tea drinker. I have cut down on cigarettes too as they have gone out before I remember that I have lit it or indeed which ashtray it is in. I roll my own too so that helps as I am that slow at rolling it takes about ten minute per roll up. Another annoying thing about lack of taste is salt. Salt tastes weaker that it did and as any chip eater knows oven chips needs salt as does Tomatoes. But I can't taste it so it piles up on my plate like the slalom slopes of Aspen. I have found the answer to this problem it is called Losalt and it is low sodium but high in salty taste. I keep saying lack of taste, more to the point I should say alteration of taste, most things smell and taste of onions as I mentioned earlier and I have no theories as to why this should be as yet. There is something positive about not having a good sense of smell though, as we live around farms it makes cows smell nicer, but not chicken poo. Between one thing and another my brain has placed me in a very strange world. Taste, smell, vision and balance all altered and alien although rather familiar too. Many new fears and new things to learn probe and investigate. The feelings that have me believe I should be somewhere else remain with me all day, as does this constant feeling that nothing is real and this homesickness is driving me insane. Fatigue Everyone has fatigue at some point, over worked psychiatric staff in Cardiff down to basket makers in Africa. The feelings are the same, we feel drowsy, sluggish and irritable. Attention and focus diminishes with tiredness and it is not surprising as the body has many functions and tasks to be carried out every second of the day, some we think about some we do not, such as breathing or eating. I find it difficult to multi-task, my head hurts and becomes hot when this occurs my judgment becomes confused and I lose the ability to walk in a straight line. I have this constant feeling that I have a tightly fitted scull cap around my head and this distracts me quite a bit. Sometimes if three or more activities are going on around me I freeze or slow down. It helps me to refocus my attention if I am able to close my eyes but not for too long as I have been known to simply fall asleep. It would seem that my daily capabilities are linked to how fatigued I am or have been the day before and also the amount of stimuli that I have incoming from my environment at the time. To illustrate this I will tell you about my day out at Asda after my stint ( Little visit) to the hospital. Thursday morning I swung myself out of bed, eyes shut tight my legs are like lumps of lead and my throat is dry I have slept from 8:30pm last night without waking. Finally after three hours of shuffling about trying to get dressed and find where I have placed trainers, cups of tea, toothpaste and a huge range of other lost items that I knew I had only just put down somewhere we are ready to visit the post office and then Asda. My treat today for not putting my sport top on backwards is a Big tasty from McDonalds (Keep the big tasty in mind here okay) I was sleeping before I got to the car, I tripped over two shadows and scared next doors cat under a parked car, I miss judged the headroom getting into the car and hit my ear on the side of the roof getting in. Once in the post office queue I nodded off and slipped off the lottery stand that I had perched my elbow on just missing a stack of beer cans and catching my funny bone on a door handle that I slipped passed much to the delight of my local post master and assistant. Who ever called the funny bone the humorous should be shot, it hurts like crazy when knocked. Docile and battered I walked back outside to the car where my partner pointed out that I had forgotten all of what I had to pay (Phone, gas electricity, daily newspaper, lottery and student loan.) The ironic thing was I had a list in my pocket I was so tired it was all I could do to say hello let alone remember what I had to do. I slept from Raglan services to Asda at Cardiff gate, a journey of approximately 48 miles I think. When we got to Asda we decided that it would be a good idea to shop first then go get my treat and a cup of tea (Mmm) I was a wreck coming out of Asda after all the hustle and bustle and deciding where to stand not to be in the way, we got the shopping done after about two and a half hours as I kept getting lost and bumping into things and as we neared the checkout my stomach was yelling out for a big tasty my mouth watered. Packing done we paid the bill, I slugged my way to the car we threw the bags in the boot, god how far is it around the corner? My stomach gave out a nine point nine on the Richter scale as we pulled up to the booth and the big tasty was at last in sight we got the bag and parked up I took one mouthful and threw up. Be warned tiredness can kill and make you throw big time. I was so exhausted I slept all the way home, without the big tasty. Ever had one of those days? Home life and Relationships. How do you know if something is real? I suppose if you hit something solid it must be real but what happens when you know it must be real but nothing feels real at all. Memories tell me that reality had existed but now it may only exist when I feel something solid such as another animal or something like a building or a car etc, and then I can believe it because I have to believe it as I can now feel it. Feeling that I should be some other place doing something else mixed with the problem of not having a grip on reality is extremely hard to live with especially when you feel as if you are not at home and with the person you were with before an accident. Can you imagine waking up in some other person's life? Not knowing that the computer in the study is yours and has been for four years? I am still vaguely amused every time I turn my PC on that my name appears on a file or a piece of work done sometime ago. I read reports that I once prepared wondering who wrote it but knowing it was I all along, how do I know it was? Because it has my name on it, other people have told me that I did it. But what if they are lying to me? Then again why would anyone take such actions and set me up in this way? I am only me after all and there I rest my case. I think the F.B.I have bigger criminals to chase than me. But that is what it feels like sometimes. Even after consoling myself with such arguments I am still not sure. It is exhausting having to always test the veracity of what you are seeing and feeling inside. That gut feeling you get when you know something is wrong, or perhaps just not right and you cannot place your finger on what is wrong, that is what I feel everyday of my waking hours now. Deciding what is reality and what are false feelings takes some effort. It can also take up a great deal of time. As I am writing this I keep wondering why I am doing it at all. It may be just my imagination playing tricks with me. Perhaps I dreamt that it had been suggested. Logic tells me though however hard my feelings tempt me to believe that it is not true, I have to trust that it is. When I crossing the road a fight breaks out between eyeballs and emotions. It would seem that my eyes tell my brain "Stop. There is a car approaching." And my emotional response is? " What car, is there a car coming or not um, really can't say old bean I'm not sure there is something there looks like a car, sounds like a car, but no it cant be can it?" By this time I could be squished or still stood on the spot knees swaying back and forth trying to decide to run or stay. Now I just go and pray on the way over to every available god known through out history. Sounds like fun does it not? Let it be said the effect is far worse in a supermarket or crowded room, however the bumps are less major and painless. The biggest problem I have had to deal with as yet, in relation to this reality displacement as they call it. concerns my partner. I try to talk about how I feel, but I feel as if I go on and on and on. A never-ending stream of how things are how I feel and explanations for unusual conduct. It really is hard because I know everyone has problems my partner being no exception has a severe disability also. Having to accept and trust everything people say is hard and I am not very good at it. I become suspicious quite easily and have to be reassured many times over that all is well and good. Paranoia I trust my partner because I have to have some grounding in reality somehow. I would be lying if I said I liked it, because very often I feel that information given to me is false. On the other side where logic lives the argument is why would my partner lie to me, it must be true that I was here before the accident because there are pictures and clothes, neighbours that know me and some I also feel that I recognise. From here on in I have decided for the good of mankind that I am going to keep a diary. Today is the 3rd of March 2004, I know this as it is on my computer screen and it must be Wednesday as I am allowed up later this evening as I do not have to go to the out patients at the hospital in Whitchurch. In the morning, see what you can achieve if you concentrate. I have had an awful week and have deafened most of the staff bemoaning my fate, actually today I feel as though I have had a breakthrough from the focus and attention group run by two delightful staff members on a Wednesday afternoon. The answer to a major problem I have is to wear earplugs when working on something, it helps a great deal and although I still have ringing and buzzing and other kinds of white noise and thumping in my head, the only true voice I hear is my own and I am chuffed to bits with it. Thank you people! The pitch of the TV set has been muffled and I am working a lot better, faster and accurately so. Go girl what a brilliant suggestion miss pigtails. It strikes me as strange as I sit among other patients in the smoke room. I do not know everyone of them but some I have become very fond of. I believe that I get such a lift from these people and I have yet to realize just what it is that they give me. I can explain what I get from the staff and let me say here and now I understand only too well what they experience on a day-to-day basis and it is a very stressful choice of career and very demanding even to those that brag they have become hardened. Rubbish! I get support from the staff if and when I need it, that is how it should be and it is. I recognise a lot of the time the support I do need and I go off and moan and moan I use the staff like sounding boards and if the one is busy there is another to help. In fact I like every one of them equally, each has their own little idiosyncratic ways that makes each one special to me. Right enough crawling my knees hurt now. I am surprised to find when the smoke room fills up people open up and talk. They do a fair bit of moaning, but it never seems to be about what they are suffering from, however they do moan about the ward, the hospital, the staff, the ambulance service, even down to the financial state of the health service. But they never seem to moan about the cleaner on the ward or the fact that someone has burned the carpet or defaced the walls or equipment, in fact one would think that most of the day patients were prisoners being locked in the building. It sounds just like a "them and us" scenario, I wonder if that is why they bond so well in the smoke room? Oh no now I feel like 007, a mole, a spy. Will I ever cope with the paranoia? I am sure that the psychologist I regularly bend an ear for most times will help me over it. Actually we did speak today and I still am amused by the way I am being encouraged by her to write. In fact she says really positive things to me about what I have written. But I still do not believe that my qualities are such that I could write professionally let alone make a career out of it. People moan about many things but if they are moaning and as they are implying nothing works for them, why come to the day unit then? 29TH FEB The last week has been awfully depressing. I feel rather down and cannot seem to be bothered to do much at all. I have been researching into this affliction that is tormenting me to death. Thinking about my discoveries I should be glad that I have at last found others in my situation, however it has only confused me further because I have found three possible explanations and terms for it one being Gross cap syndrome on which I have to gather more info on. It has been suggested to me by my GP that the feeling of a tight band around my head may be Gross cap. I do not know if this is correct or not at this time. I believe I had an accident because all information about it is there in black and white, so there is no room for disbelief no matter what my inner feelings tell me. What really concerns me is that it had been suggested that I am suffering from "reality displacement", part of the Gross cap syndrome, a common thing I understand from medical staff at the Gloucester Royal when head injuries occur. During my search to find out more on the condition I found nothing of that title, nevertheless after many weeks of searching I found two other similar conditions that share some commonalities with this affliction however I would not say that all are familiar to me and therefore I feel I do not have. Depersonalisation disorder I would say sounds remarkably similar to what I am experiencing but so does what little I have found on Gross cap syndrome (which includes the feeling that one is wearing a tight fitting skull cap 24 hours a day) and reality displacement disorder and desensitisation. So which one is it? Or is it a possibility that the cause has something to do with the severity and duration of each symptom? I have no idea. I have taken this information from a public website; "Depersonalisation is a change in an individual's self-awareness such that they feel detached from their own experiences, with the self, the body and mind seeming alien or distant." (Kind of, yes I can see the similarities) Harmless I suppose when in a safe environment but not when one is interacting with a hostile environment such as: a busy town centre or a noisy kitchen full of sharp utensils and gadgets that can burn, cut and blend or a shop full of shoppers with shopping cart rage under the influence of children. Derealisation is said to be: Hang on just a second is it just me or has that sentence just inferred that it is all in the mind? So how come I feel like this permanently? I read that there are other ways to become desensitised and one way is to take a nasty fall on one's head. I suppose that it could be a symptom more than a disorder, the disorder being the harder to improve? I really cannot decide. All I want is a way out of this state I know I was not like this before that fall and that is what makes me so angry, it is frustrating to be slow and incompetent. Even watching snow falling makes me giddy and tired. I feel that my senses are turned up full and my brain hurts from the overload and yet I find that under some circumstances I function a lot better, but, and this is a big but, the world that I need to function in at 85% needs to be quiet and slow, no rushed conversation or loud noises or other conversation, let alone 100% how can this ever be? It is an impractical world that I look for in my search. I try so hard to be normal I feel inferior and less able than I ever did. I make myself go outside and continue to do so even today. I know it would be much easier to comply with my feelings and give in, stay safe indoors but if I do that I may as well have died that night. It is not only going out that has changed by the way of perception and emotions, taking a bath is probably one of the most horrific events of my day and I loath it beyond belief. The way it feels against my skin makes my blood run cold and my bones feel as if they will poke through the sides. I hate the way the water feels too, I get quiet claustrophobic some times and the water feels quite weird. I know I am repeating myself but it does terrify me. I used to be much more self-assured I mixed well with others quite the gig animal that raved in laser lights until six in the morning and then gone to work on the Saturday, no more of that for me I can only just put up with an indicator light for a few seconds before I feel ill now. I suppose it is good for me to have a moan, especially on paper as it saves staff having to buy earplugs (haha). According to other research I have found: A psychologist by the name of Dugus coined the term depersonalisation disorder in 1898 also stating that it was a unique medical condition. Until recently it has resided under the umbrella term of Disassociative disorders in the Psychiatric Diagnostic and Statistical Manual (DSM) which is said to be the bible of psychiatric diagnosis. On one of the web sites that are dedicated to Depersonalisation disorder I found this information. I cannot tell why it makes me feel a bit better but it does. How bizarre. Oscar Janiger a Los Angeles psychiatrist who had suffered with Depersonalisation disorder himself, apparently he was a former associate clinical professor at the University of California, Irvine, and treated countless patients with Depersonalisation Disorder through out his forty odd year practice. I also found out that: "Depersonalisation is the third most common psychiatric symptom and frequently occurs in life-threatening danger, such as accidents, assaults, and serious illnesses and injuries; it can occur as a symptom in many other psychiatric disorders and in seizure disorders. As a separate disorder, depersonalisation has not been studied widely, and its occurrence and cause is unknown." Patients have a distorted perception of themselves, their bodies, and their lives, which makes them uncomfortable. A person may feel as if he is an automaton or is in a dream. Often the symptoms are transient and occur with anxiety, panic, or phobic symptoms. However, symptoms can be chronic and persist or recur for many years. (Ah ha sounds more like it, so I might be a D-person after all then) Patients often have great difficulty describing their symptoms and may fear or believe the symptoms mean they are going crazy. The patient often feels unreal and may experience the world as unreal and dreamlike. " "Some patients are minimally impaired; others become severely compromised or even disabled. Although some can adjust to depersonalisation disorder or even block its effect, others have chronic anxiety about their state of mind, worry whether they are going crazy, or ruminate on the implications of their distorted perceptions of their bodies and their sense of estrangement from themselves and the world." "Complete recovery is possible for many patients, (Oh good) especially those whose symptoms occurred in connection with stresses that can be dealt with in treatment (Oh no). Other patients do not respond well to treatment but may gradually improve on their own. (Ah ha, that is one answer I had an accident that is why my condition is not improving as fast as I had hoped, still Rome as they say...) "The feeling of depersonalization is often transient and resolves spontaneously. Treatment is warranted only if the disorder is persistent, recurrent, or distressing. Various psychotherapies (e.g., psychodynamic psychotherapy, cognitive behaviour therapy, hypnosis) are successful for some patients, but no one treatment has proved effective for all. Tranquillisers and antidepressants have helped some patients. Other psychiatric disorders, which are often associated with or precipitated by depersonalization, must be treated. Treatment must address all stresses associated with the onset of the disorder. Diagnosis is made based on the symptoms. The physician must rule out physical disorders, substance abuse, and other Dissociative disorders. Psychological tests and special interviews are helpful." Okay so I have had tests and I am undergoing therapies of various kinds some that I understand some I do not. If it helps lets do it I say. I am coping better than I did last year I think. People tell me that I have improved in various ways. I suppose it's like being born again but with a more upgraded intelligence, for want of a better analogy, but in a different world on another planet. Perhaps I have been switched with a doppelganger from a parallel universe and that is why it all feels so unfamiliar but so very familiar I really do not know and now I have confused myself so much I have a head ache and the sides of my head feels like two saddle bags filled with hot water, I need a break. During my break in the kitchen I realised that my functioning was slow in reaction and it took some doing to get a simple task done. The task was to get tablets into a weekly dosage box marked with the days of the week and clearly numbered. I have left it on the table half filled and with the wrong dosage again. Once again the variations in noise were too much for me I am really annoyed with myself. It would seem that different cycles that a washing machine goes through has different frequencies of noise. When certain frequencies are sounding it really inhibits my performance in basic tasks. I remember something from newborn and infant studies years ago how babies and toddlers were sent off to sleep by the noise of a car engine, this is not a quote but I think the it had something to do with frequencies and tones. Perhaps the noise inhibits the functioning of my brain because it is tired anyhow so the noise lulls it, it's a theory. Perhaps that has something to do with it all, I do not know. Perhaps it would have been better to have not known my self before. I feel a sense of loss un-yet I know who I am. Am I going through a grieving process for my lost self? My psychologist thinks that I am as I have spoken to her today. I was going to take this in with me but I thought it was pointless, not because of the results from the team that looks after me but, I didn't think it was worth it, I cannot say why as I do not know, I get those feeling of worthlessness quite often. I think studying psychology has hindered me somehow. I just cannot stop researching and generally wearing myself out. I need to know what is going on and how I can help myself most of my time awake and even in my dreams. My biggest fear is that on the career front time is running out for me. Most positions require a minimum of three to five years experience and time waits for no one including those with problems such as is being experienced by myself and countless others. I feel quiet worthless at times and it amuses me to hear another person remark that I am academic. If I was so clever then I would be able to make sense of this and set myself free from this insania (Oh no when did Peter Andre get into my head?). I still have a sense of humour that is a bonus and yes I can make light of this entire mess if I try but sometimes it strikes a sinister blow. I recall how easy it was to take on mounds of projects and finish them all within a few days, now it takes me weeks in a quiet and isolated environment. Interruptions blinding my concentration and putting me all on edge that leads to confusion and fatigue. Oh no I feel a ditty coming on... My Temporal lobes have been jolted, my parietals are still in a mess, the visual cortex is buggered and my best thinking now done with a guess. The world looks to me like I am dreaming, I feel alien and rather alone, at least if I was a real alien, I would be able to go and phone home. As it has been shown I can still string together a little rhyme, but I am in semi quiet and it is directly internal, all I am doing is typing down my thoughts so that is not as cognitively taxing as typing research from a book or another secondary source and it has taken over an hour to accomplish and now yet again I am in need of a break. Capgras Syndrome was named after its discoverer, the French psychiatrist Jean Marie Joseph Capgras. The person's main delusion is that an impostor or an exact double despite recognition of familiarity in appearance and behaviour has replaced a close relative or friend. The following information I have taken from a web page. "The patient may also see himself as his own double. Also known as Delusional misidentification, illusion of doubles, and illusion of negative doubles, misidentification syndrome, non-recognition syndrome, phantom double syndrome, and subjective doubles syndrome." Delusions better known as false beliefs sometimes have bizarre content that are held with strong conviction even in the presence of contrary evidence. For individuals suffering from Capgras Syndrome they typically believe they exist in a world of impersonators. This feeling in a delusional world of doubles can be so alarming that it drives the Capgras sufferer to psychotic behaviour. The syndrome typically has the following characteristics: The person is convinced that one or several persons known by the sufferer have been replaced by a double, an identical looking impostor. The patient sees true and double persons. It may extend to animals and objects. Associated Features: Differential Diagnosis: Schizophrenia Cause:
"Although incredibly disturbing to experience depersonalisation is quite harmless, it just feels dreadful. It is caused by a shift of perception in the part of the brain that provides us with awareness of our environment and disappears after anxiety levels have been reduced back down to a 'normal' level."
"A change in an individual's experience of the environment, where the world around him/her feels unreal and unfamiliar. Again, this symptom is caused by a change in the way senses perceive our surroundings due to sensitised, anxious, nerve signals reaching the brain. It is completely harmless but can be disturbing. The more you give it credibility, the longer it stays with you. As anxiety levels are reduced, derealisation disappears. "
The person is conscious of the abnormality of these perceptions. There is no hallucination. The double is usually a key figure for the person at the time of onset of symptoms. If married, always the husband or wife accordingly.
Some disorders have similar symptoms. The clinician, therefore, in his diagnostic attempt, has to differentiate against the following disorders that need to be ruled out to establish a precise diagnosis.
Alzheimer's Disease
Huntington's Disease
Multiple Sclerosis
Traumatic Brain Injury
Substance-Induced Delusional Disorders - hallucinogens and alcohol
Mood Disorders with Delusions - manic and depressive types
Dementia
"It has been reported that the Capgras Syndrome and related substitution delusions, that 35% have an organic aetiology. Some researchers believe that Capgras' syndrome can be blamed on a relatively simple failure of normal recognition processes following brain damage from a stroke, drug overdose, or some other cause. This disorder can also follow after accidents that cause damage to the right side of the brain. Therefore, controversies exist about the aetiology of Capgras Syndrome; some researchers explain it with organic factors, others with psychodynamic factors, or a combination of the two."
Treatment:
Personally I think I am definitely more of a D-person, how about you? It has been a busy week for me and now I am winding down. All this thinking and this
typing is killing me quietly and I need to sleep.
As I lay in bed this morning I could hear music playing away outside, our neighbour was washing his car. The music was not loud but still I was aware of my eyes jumping about in time to the music. I lay there just thinking about my eyes, feeling the way they seem to move around in the eye socked searching for light, jumping to every sound, they feel abnormally big to me. One of our cats had jumped upon the bed but I was concentrating so much on keeping up with my eyeballs that I must have leaned my arm on top of her back, she screamed and swiped at me just catching my arm. As soon as I realised what I had done I tried to make amends but cats are hard creatures to please and trying to explain that I was sorry was futile, until lunch anyhow.
This is something you can try yourself, just close your eyes and listen under normal conditions we hardly realise that out senses are responding to every minuscule bit of information whatever the source, just make sure that you are not leaning on a cat at the time.
It is hard to explain just how hard it is to focus on something that once was an automatic procedure. An example of this is falling over whilst watching clouds go by or trying to walk in a straight line while carrying cups of liquid. Walking upstairs whilst carrying the ironing and negotiating which foot goes where and how high one should step.
Focus and attention is everything. If you are not focused then you will not be paying attention and that is probably why I tend to throw away spoons, knives, table mats, cartons of milk and other such things that I should not be throwing away.
It is quite easy to take for granted all the things we do at one time, such as making tea, coffee, and sandwiches whilst keeping up with the conversation and with music playing in the background.
Another scenario could be at work. The noise of computers, the moving off furniture as someone shifts about. Perhaps someone has a cough, someone else is breathing heavy and then you have the noise of traffic and you have to answer the phone among muffled conversation.
Sometimes it is possible to cut down on distractions such as wearing ears plugs to cut background noise but visionary distractions tend to run amuck and there is little that can be done.
A perfect illustration of how hard it is to cut out visual stimulus is a little story of a car ride to Newport concerning a bag of sweets and a small stone.
Bright and very early one morning my partner decided that a ride out to Newport would kill or cure my depressed head that I had been wearing for a week. The air was crisp, it made the tips of my ears sting as we set off to the car, only a few feet away from us, nonetheless a mile or so for us as the shadows leaped up at my eyes and the sun shone like it does in the Alps, bloody blinding.
I must say that my hard working partner deserves a medal the size of a frying pan, guiding me whilst keeping me upright, watching and holding on as I make my wobbly way.
Once in the car I try to get my belt on, I close my eyes all I see are green and yellow after images that dance around in my head, this makes me quite giddy. I start to laugh I cannot say why but what ever it is, it is all-good, and it has to be, why else would I laugh?
With that consoling notion I ease myself back into the seat and watch as the light show commences. I hear and feel the engine start, my partner's pride and joy is now in gear and off we wiz in some direction at this point I am holding my stomach as I chuckle away, I have parted with hard earned money for a ride like this at the fairground in Barry Island.
I wait for a few minutes before I attempt to open my eyes let alone look out of the window with the landscape and other traffic going by at strange angles and speeds. My partner reaches over and rubs my hand to let me know I am not alone. I am asked if I would like a sweet, I say that I would. I ask where they are, I am told the glove box. You would think that this is a simple task, but the sun is still shining and where I have had my eyes closed I still have a trace of after image going around at a fair rate and I am now disorientated. I find the sweets, take one out and turn to where I think my partner is sitting open mouthed in readiness, but no, I threw it on the floor. Still laughing I tried all ways to find it, so I dished out another but this time I just held it out for it to be taken. The sun is flickering now and I am squinting into space as I am feeling about on the floor. (And before you say anything the floor was clean and the sweet was a smooth mint.) I thought I had found it, but with all the focus taken from my sense of touch I grabbed the mint (Pebble) and popped it into my mouth.
There are times to tell one's beloved things and there are times that you do not, this time was one of them. That pebble had obviously been in the tread of my trainers. Oh no!
On a more serious note, noise and light is very taxing. I wonder if we actually broke it down into percentages, which would be the most taxing senses? I would not mind betting a pound that vision is at the top of the list perhaps followed by hearing then smell and touch.
If you think about it flashing lights are so annoying and so is loud music, neither of them conducive to the functioning of the brain. Then you have touch and smell. I think that touch might have the less taxing effects. For example, I could easily be able to read while someone is massaging my back but if some dirty sod gave a disgustingly bad smelling fart I would not be able to concentrate at all.
When I could drive I used to absolutely enjoy night time motorway driving. The darkness around me, the acceleration and loud music there was nothing I could not do in that car.
I was a space cadet going through lanes of flashing lights, I would shoot invisible laser guns from the headlights at the space pirate lorries that passed me. With a bit of imagination and Lisa lashes on the CD player I would be flashing passed the lights at warp speed.
Today that fiction is my reality, flashing cone lights render me useless. I slow down mentally, my speech becomes slurred and I am hardly able to put a sentence together. No Gate Crashers Ball for me this year, although I have been told it has been nearly three years since I ever attended a function like that, but time has little or no meaning for me. My attention to time has altered too and that is a problem that holds many others.
Time since the Babylonians and Mayans time has engulfed our lives Egyptians, Aztecs and Incas everyone is at it. Every day our world is run by time, night time too. It is a very strange concept because all it does is force people to rush about and become stressed, but not me, not anymore anyhow.
When I worked I had to be there on time. It was pretty straight forward I got up, I showered had a cup of tea, drove to work. Time for many of us goes rather quickly in the morning especially if a family has a child to attend to that is common knowledge. However what has happened in my life causes time warps, sometimes worthy of Moulder and Scully investigating the strange phenomena. I feel an illustrating story coming on. (Looks up, clouds and wonky vision twig light zone approaches)
Sometimes on a Monday evening I visit a close friend to play chess, it takes approximately five minutes to walk from our front door to his.
Sometimes I have taken twenty minutes and I cannot explain why. This problem is extended to making tea in the kitchen, dog walking and other things.
Asking me to make a coffee is like asking a Greek waiter for one, you will get it when it arrives, although I try to be as quick as I can. How long I take depends greatly upon the amount of activity I suppose, however these lapses of time have occurred when only myself has been present and the kitchen was relatively quiet. Is it an overload, it may well be. I have always been an active thinker. My mind will debate by its self all day. The content of the debate could cover a thousand topics from cosmology to environmental issues, scientific analogies to what does an insect think or even better what is for supper and can I find a fag paper? There seem to be musical tones being emitted from the central heating tank and it sounds like a repeat of Dido's new songs. No wonder I find it difficult to maintain my focus and attention as the water system sounds like another song. Hey and even better, our refrigerator sounds as if it just asked me for a water bottle. I would like to impress on staff at this point I do not really believe it ok, I know they are just sounds just in case you think I should be sectioned.
The therapy at the day unit will help me with this, I am hoping to see some improvement in a while, I have no idea how long I have been attending but I realise that it will take time.
There is a worrying aspect to all of this and that is the safety aspect.
If left unattended in control of the cooking I tend to become side tracked and often had burnt pans and set fire to the toast and such like accidental happenings.
Other problems might sit at the other end of the spectrum. Over focusing tends to be just as much of a problem than not focusing, for example in the kitchen earlier I was pouring out a drink, in an attempt not to spill it or over fill the cup I became suddenly aware hat most muscles in my body were stiff and at peculiar angles. I was also biting down on my tooth into my lip, which was quite sore afterward.
I mentioned this strangeness to some friends of mine and they told me that they too had noticed. One pointed out that my hand would be held at an angle and held there until I had finished doing whatever it was. They described it in an analogical way; my brain seems to be acting in a similar pattern to a printing queue on a computer.
When the system is full other programs have to close down and only when the queue is systematically reduced will the program respond by spooling other information.
That explains why I cannot any longer drink from a cup and walk as I did before when I was in a rush. If I drink, I stand very still these days.
Touch is a very strange concept; it gives much information about our external environment such as; when to put more clothes on when to take some off, it gives direction of what is touching you for example, a stick touching your back, a stone in your shoe and so on.
When I touch something I can feel it is solid or fluid or electrically charged from the static that my body produces. I can feel the Sun shining on my face and arms, but it could all be a dream.
I try to focus on reality and it is extremely hard to say if something I am touching is real or a figment of my imagination, however I cannot doubt that it is there. This cannot be logical and therefore it confuses me how can I get this feeling from out of my body. I find it difficult to function when I have this paradoxical problem to deal with because if I find no answer in solving it, am I living in a real world?
Am I acting accordingly? I do not know so I just respond to other people event-by-event, happening-by-happening. Every second of my day I watch and observe situations and try to read peoples responses so that I can tell if I am acting appropriately because as far I can tell, I do not know. Confused? Join the club.
Sensory deprivation has its weird moments. Since I have been wearing earplugs to block out external noises that I find distracting I have come to realise that my brain has switched tactics and now I find myself suddenly snapping out of trances.
I seem to be experiencing micro glitches I think my eyes are taking a battering now. They have been taking the overload from the ears (I think she's going to blow captain, "aye Scottie")
As I look at the screen now and again it flickers to me not to look away, it entrances my eyeballs with its flickering nano pixels. That's it I was captured by aliens and they are sending subliminal messages to me through the computer screen. They are saying, "Go to thy kitchen and make a cup of tea."
"Yes master I will obey". And off I scuttle to get the flask that my partner has made me, so that I do not have to operate the kettle, as it is 23:33 and I still find it difficult to settle so I am alone down stairs in the study. "So caring", I smile to myself as I pour it over my feet because I am thinking of how good she is for caring. I hate irony.
There is a positive side to having the attention span of a dead kipper I hate to admit that I really enjoy a hand rolled cigarette, however since the accident I have saved quite a lot on tobacco and cut right down as I very rarely finish rolling one and sometimes find that a half made cigarette is still in front of me after sitting there for half an hour or more.
When I do manage to roll one, I usually lose it and if I do not lose it I quite often drop it in a sink of water or put it in the bin and set fire to the bin, mistaken by my brain for an ashtray.
Pain is another deflector of focus as are headaches and other symptoms that make us feel unwell.
Much time had passed after the accident had occurred and the medication that I was prescribed was being reduced. During this time I became more aware of feelings and I became sensitive to touch in that something would feel familiar but it felt alien, I was under the notion that these feeling were being generated by the cocktail of pharmaceutical drugs, perhaps an after effect of steroids and such like.
Daily I have headaches I have four different types of headaches sometimes |I can have one or the other and on the odd occasion I have experienced all four together.
The first headache I describe more of a head pain rather than an ache. This can be disabling alone at its worst.
It tends to attack the temples and travels down the back of my head. The pain reminds me of the feeling one gets when a hair clippers is held at the back of the head at the protrusion just above the nape following down to the neck to the tip of the spin.
It is a burning sensation that gives the feeling of blistering of the skin, like a fuzzy irritating stinging feeling.
This then spreads to the ears and side temples, the feeling there is very much the same and the effect can last for several days at a time and seems to be running on a sliding scale from a minimal percentage of around 2 at its lowest up to a blinding 100 percent which switches me off completely.
This happened to me over our local park when I had decided to have a swing. I had left the house with the headache I find it difficult to give in to it, hence the bruises, bumps and scratches I now wear like badges.
If this occurs in a shop I know the cause, but I am not so sure about an explanation for every time it has happened, although it rarely occurs in quiet settings apart from when I am worried about some or I have a problem to solve.
The second headache is with me all the time that I am awake; it feels as if I am wearing a skullcap. The feeling goes from the top of my nose up about an inch and a half like a band. It travels around my head to the back and straight up over the middle of my head back to the top of my nose in between my eyes. This has varying degrees of severity and tends to be forgotten until I am trying to focus on a task, such as typing or reading or keeping track of a message on the phone among other things. Travelling in the car intensifies the feeling greatly and quite often it fatigues me to the point that I have to sleep else I am physically ill.
The third type is a banging thumping feeling that does not seem to originate from any particular point of origin, it just arrives for no reason other than to annoy me. It is sudden and electrical, it can last from seconds to almost a minute perhaps I can not be sure, in real time it could be an hour, only I am sure if this occurred for a noticeable length of time then someone would have detected it by now?
The fourth type is not unlike a migraine effect. It attacks the sinuses and the eyes. This I usually get from being anxious and being in the car does just that. This usually I can half by taking prescribed painkillers of a fairly medium dose.
It is accompanied by the feeling of blistering and has a buzzing feeling to it usually around the top of my head about five inches in circumference.
All four of these happenings affect my ability to function correctly in many ways as you may or may not appreciate.
They reduce my output so I am slower in reaction in decision-making especially if I am conscious of some other input such as when I am cold or being rained on, all these distractions take up much energy.
To a person without these problems everyday tasks goes un-noticed as other tasks are carried out time after time after time. Even as I am typing this I am aware that an earplug is pressing upon my skin and it is annoying me to hell and back. The out come is that I concentrate so much upon the earplug that I start to make spelling errors and although when I type I use two fingers and I dare not look elsewhere other than the keypad I still cannot get my fingers to hit the correct keys.
My arms feel alien to me they feel as if they belong to someone else.
Have you ever seen demonstrated the party piece performed by two people. The one stands behind he other their arms pushed under the person in front? It looks like the person in front has really weird arms the one at the back desperately trying to find the mouth of the person in front? This is usually done with a pint of something just to add to effect and it looks hysterical to the audience. A good analogy of how I sometimes feel about my limbs.
I know they belong to me but I feel that they don't for example have you ever been in the situation whereby someone you know goes away for a few years, you miss them so very much yet when they get back you feel nothing? That is how I feel about me, that has me worried slightly I have no logical explanation and I am too tired to reason why.
There are many questions in my mind as there are stars in the sky and there are as little answers as there have been contacted from alien life.
One such question is how is it possible for me to regain some sense of reality but not one hundred percent?
I realise and I am so thankful that I have not lost the skill of reading and writing and playing chess. In the unit, there are some people that are not as fortunate one such young man comes into my mind.
Thinking of him makes me feel so many emotions it is unbelievable. He was a singer, a performer he could play a keyboard and he sounded just great he and his mate had a two-piece band, I recently purchased a tape from him. I had not realised that it was his tape playing in the background and in passing I mentioned how nice the music was. Little by little he explained to me that it was in fact him singing and playing the keyboard. He could take off a load of artists such as R.E.M and the stones, he played Robert Mile's track Children among others.
Now this is the bit that sucks, during an accident he lost the ability to speak and has other physical disabilities, what a f*****g waste. Please excuse me this one swear word but if you only could feel the pain I feel for him it brings water to my eye (only the one works, it is not a misprint.)
The day I was made aware of this I was incapable of doing anything else but think about the traumatic event in that mans life. He would have gone a long way in the entertainment industry they were already touring clubs. He has a real talent and that is the damming thing he still has the talent but not the ability to carry them out functionally or physically that amounts to a very high cost in a person's outlook on life. And that is the most frustrating and unstoppable thought once it enters ones head.
Frustration can take your attention no matter where you may be or what ever you are doing. For example: You are with some people perhaps three or four others that stop to speak and some how in the conversation some one asks you a simple question such as so what are you doing these days? Before you can think of an answer the thought of not having anything to do makes you angry and sad. You already feel bad inside and outwardly although you try to cover up the fact that you have very little you can do, your body language has given you away with an unconscious slumping of the shoulders.
Most feelings that I feel are heightened by thoughts and I am very aware of it. I sit sometimes a search the web for alternative remedies for a calmer life from sucking celery to breathing deeply to the sound of whales calling each other I try in desperation to slow down my thoughts or block out stimulus from the external world so that I could have at least lied about something. Made up some story but instead I slurred something about a psychiatric day care unit and Sunlight disturbing my brain.
Needless to say it is at times like those that you find out who your real mates are and those you are better off without, still it hurts and then this goes on around your head and makes you feel worthless. It is a spiral in a downward manner the death spin how I think at all amazes me.
Social life is supposedly to relax ones soul and make new acquaintances and generally do what ever you find to be sociable. It extends ones knowledge by communication and shows an interest in other individual's well being and so forth.
I cannot state that I do not have a social life, but I can say that it has definitely changed in a dramatic manner. In fact I see very little people then all at once I may see many and have so many visitors that I fall asleep on them. But only three of my academic friends have stuck by me Duncan, a former lecturer and dear friend and my old mate Chris who got a first let me tell you and Mark who got a first also.
I did have a phonebook full of numbers a network of people that I could rely upon and they could rely upon me, whatever the task. Now they can no longer rely on me I am no longer part of the collective so to speak and the rest is obvious is it not?
The world seems to have little time for D- People. There I have said it I am a D-person. I had an accident that has left me with an affliction known as depersonalisation disorder among other things. And I do not like it one bit although I seem to be coping underneath I am annoyed but patience is my only collaborator while time is my Othello, my nemesis.
I am going to wage a war against my brain and I bet I lose. It is a lonely planet but I like it quiet.
Most of my attention goes on focusing on the reality side of things. I am afraid that if I let go that I may slip into an insane world with no way out while I battle with the real world, as it seems to me.
I apologise if that makes little or no sense, there again perhaps one ought to be worried if you should know what I mean.
There was a time I remember that I questioned my insanity but I cannot for the life of me decide when it was perhaps it just then or perhaps a week ago, who knows and the more I sit here thinking about it I do not really seem to care. It would seem that I am having a change of mood.
I think it has something to do with writing down my thoughts, I ramble away to this computer as if it gives a stuff about my problems, but it is I suppose a good sounding board as I have bound to have mentioned somewhere among these pages.
I do not foresee a future in publishing, as I would bore the pants off of anyone. But on a more positive approach it is good exercise for my brain and practice makes perfect. Night time is the perfect time to write for me, it is nice and quiet but I feel the cold and the heating has gone off on the timer.
Now I am faced with a problem that should be easily dealt with but no matter how I try I cannot make up my mind what to do and in the process I am freezing cold and slowing right down. So I hear you say turn on the heating, ah but then my beloved upstairs in bed will roast, so I have one other option. I have to turn on the portable gas fire. This mind you is at 2:52 and as you can appreciate if it is cold and especially at night, sound travels faster and a longer distance.
Now do I chance gassing myself? Or perhaps blow up the house. Even worse still I could wake up sleeping beauty upstairs or chip the wood work as I am in the study and it is in the lounge, behind the door which is at the side of the surround sound unit and television which I am bound to bash into with the fire.
Meanwhile back in the study my fingers are now turning blue and I am feeling like I am made from steel as I trudge to get the fire. I have no reason for not just going to bed. It would be so cosy and warm I love my bed especially when the cats are there, purring makes me sleepy.
This behaviour has cropped up before and without being crude, it happens usually before a monthly cycle if you know what I mean. Usually about two weeks before I have surges of pure energy for approximately twenty-four hours a few days a week. I use the word pure energy in a lose manner as sometimes I run out of puff and that influences the occurrence of the dreaded micro lapses in time spans and gaps in memory such as I mention about the Car ride shopping.
Now I am really cold, I have to take the chance and get the fire. If some finds this one-day and this ends right here, it was because did something with the fire, or scratched the woodwork okay...
I have returned unscathed and intact, however long it took, it was far too long and now I am so tired and hot that I no longer need the fire on but I got it in here with out waking. I feel lucky now I will return to my twittering after I carry out an old pagan ritual involving the Moon and a Hand full of silver.
Bad luck strikes in the kitchen and the cat is covered in water, cold but still water. I mistook the cup for the kettle and tried to fill it up from the water filter, it has gone everywhere and I failed to notice until half of it poured out.
Perhaps this is a bad idea and I should go to bed. I can see that it is 3:25 AM the right hand side of my screen has a clock as do other computers I suppose and sense tells me that I should go to bed, but I feel a sense of dread. It is a bit similar to the feeling I have when entering the bathroom upstairs I hate that feeling, for no reason at all after the fall I have had problems with entering the bathroom, again I do not know why nor can I tell you just what it is that makes me feel like this.
What I can tell you is sometimes I have a fear and loathing of that room so strong I will not go in alone. I try to rationalise my feelings and even though I realise the stupidity of my reactions I still find it difficult to cope with it. I have become better at coping with the problem by opening the bathroom window for ventilation in case it was just claustrophobia.
I do not have the door shut whenever I feel like this and I want a bath, if I need to use the toilet I use the down stairs facilities. I have even just gone in there to force myself, sometimes it works, sometimes I have to give in and get out.
I cannot give explanations and I cannot really say one hundred percent I know what I feel when it happens. I feel anxious about being in there and although it does not happen that often, it still is a bother if I am on a cleaning task. I tend to forget what I am doing as I just have blank moments then leave or just feel the need to get out, so I yield to my emotions and try to leave slowly so that at least I do not have to feel so bad about giving in.
I wonder apart from individuals that suffer from genuine phobia's just how many other people go through the same feeling about particular situation such as I have experienced. Not in my wildest dreams did I ever think that I would see life from the other side of reality, how strange everything appears, bizarre, complex and loud. Sharp, dull and every other sense that I have seem to be turned up to the maximum output and I cannot find the remote control to turn them down.
Come another few hours I will be useless and almost comatose through lack of sleep better to work while I can. I hate cyclic events, they do not come with instructions and I have no idea how to stop these disturbed nights. At least I think I know what it is. And my PA keeps a record of events that lead to behaviour disturbances such as sleep irregularities as I forget quiet a bit. It is 3:51 AM now and checking the time I am wondering when I will stop this mad few hours and get some sleep. Did I record the time on here somewhere? I will check. 2:52 that is almost an hour is it not? I think I am actually ready for bed now it is now 4:05Am and I have been leaning on my hand whilst having a nap. Goodnight. Time watching is taxing especially with the noise of the fire and the water pipes I had to take out my ear plugs to move the fire and I have lost them, yet again.
I wish I could get myself upstairs I am so fed up with feelings that will not allow me to settle into bed even though I am in desperate need of doing so. I will sleep down here to night on the new sofa, but I have no covers down here and I really feel as though I cannot go up the stairs.
I cringe at the thought and after staring at the screen with my head cupped in my hands I tackle the problem with compromise that when I get tired enough I will go to sleep. Now I have a severe headache and I have to go upstairs before I blank out completely.
It is two days later and I have returned to my computer in an attempt to write something down. I think I over did it the other night and now I am experiencing what I call a toffee moment.
Toffee moments as the name implies is a period of time when I feel as if I am walking through a pool of warm gooey toffee. I am slow like a three toed sloth ambling along, my responses are slow and my speech is impaired slightly by the fact that my head is banging and I fail to think quickly enough for my mouth so I say nothing, just mutter a reply and grunt in agreement now and again, suites me fine.
In toffee mode I find it difficult to deal with society. It is all so loud and colourful, faces and bodies swaying around me and I just toffee walk my way up through town hanging on to my partner blindly being led by the arm through the swirling masses.
Today I had put my shoes on the wrong feet again, but this time the error had been spotted before I tripped over my sticking out feet. This was just as well as today the Sun is shining but it is cold, so how bad could it get. I am blinded by shadows and dancing lights and moved by the swirling crowds brought out by the nice weather, delivery vans and lorries pull off, pull in and unload, I am starting to get slower and more confused by the minute. I trust the arm that is clutching me tight so I am not worried, just very tired.
Suddenly we are back in the car and just pulling at outside the house. Thank god for micro time lapses. I do not bother to report these occurrences now as the response is always the same and there is little one can do to resolve them and little can be done because before I realise what has happened, it is over.
What might have happened to me if I had been alone in town? Would I have wandered off somewhere or just stood still? I have no answer to that and I certainly do not wish to find out.
A little while later I sit trying to make sense of a conversation I am listening to on the television, sometimes it takes while before I get over the symptoms of overload. When I ask what was being said I was told that it was the weather forecast, strangely enough I thought it was in Russian. That happens quite a bit too. When trying to follow a conversation, sometimes the speaker will, for a few seconds sound as if they are speaking far too fast for my brain to make sense of what was said.
If you fast forward a tape by holding down the play button the noise that you hear is recognised as speech but the bad streaming, so to speak, causes it to be stretched and distorted into high frequency sounds this makes it difficult for the brain to make any sense about the content of the sentence let alone decipher any true meaning.
It is the 10th of March today and I really had problems about going to the day unit today. I really did not want to go. Yesterday was the same. It takes it out of me travelling in the Ambulance car and I find it very difficult to function in the mornings, however if I get up at 6am I tend to become more alert and by the time I am dropped off at the unit I am tired but at least I can function.
On my toffee days I get irritable and tired easily. A Toffee days expends more energy than I have and I have felt this toffee mode coming on over the last few days and today is no exception.
Yesterday was a below average day today is just below that again. Once I arrive I am usually okay and one cannot help but laugh at the things people do and say, staff and patients alike.
On route to the physiotherapy room today I felt unsteady. I also went down with another individual so between electric trucks whizzing about driven by porters that just adore the horns on the trucks, doors that open out in front of you, wonky flooring and someone going on about other things it is a wonder I arrived there at all.
While trying to balance myself by holding my handout on a wall, I noticed a silver coloured stem coming out of the floor, I thought it was just another coloured tile and stepped on it, it was discarded rubbish someone had dropped onto the floor a cigarette packet in fact. When I stood on it I suddenly felt a foot hirer and tried to jump down from it, kicking the wall instead and sending myself flying.
Sometimes that corridor can look menacing. It is, or seems to be a twenty pence piece shape and it the light must reflect in all kinds of directions, this prism effect can be immobilising at times especially if one becomes distracted.
On the occasions that one of the electric trucks pass by I tend to stand still with my eyes closed. Over the weeks I have come to learn that the more distractions that I eliminate the less time it takes before I can function again enough to carry on going.
I would stand with my fingers in my ears but I need to be holding on to something as when I close my eyes the after image flickers in my mind and makes me quite giddy.
Thinking back on how it looks id difficult because I am afraid it may well be just my imagination playing tricks on me. Usually I walk holding onto the wall or just walk straight up the middle of the corridor.
If you stand looking at the floors in the corridors I am sure they look crooked and the edges against the walls seem all tucked or rolled so that it seems rounded. Today I tried to focus on what exactly it is that makes it look that way. I can only guess that the problem is caused by shadows, and the way the light distorts the image, as yet I have suppressed the urge to stoop down in the corridor and investigate further.
At the bottom of he wall there is a black coloured band that runs along it, it looks strange and gives me an actual physical feeling, which must be all in my head, that I am walking through it, like walking along a beach up to ones ankles in water. It seems to stretch out across from wall to wall like an invisible fuzzy band of warm air against my skin. I know this cannot be and I am sure if I were able to block it out of my vision the feeling would probably not occur. Still nothing fazes me these days I get used to experiencing from downright illogical to downright bloody weird.
Another thing I have noticed about the black painted band on the wall is that it follows on to the doors but on the doors a wave has been painted not a straight line so it looks not unlike a step up and a step down the other side.
I have become aware of this now so I no longer try to step over them. It is quit strange though that the fuzzy warm feeling I get when I think I am walking through the black line painted on the wall as I approach the doors the feeling rises in correspondence to the height of the paint, then drops back down as the paint shape returns to a line.
The most logical way I can think of this occurrence is perhaps the anticipation of walking through something as if my brain thinks it is real and so prepares to feel something perhaps giving the impression of warmth and fuzziness? Does that make sense at all?
Some years ago we were in the car at a roundabout and a class one articulated lorry ran into the back of the car. For days I had serious neck and back pains, a nurse at the hospital started to man handle me a bit even though she did not intend too, her Nordic appearance made me wince as she tried to shuffle me into a cubical kicking my ankle apologising she did so. I just caught sight of her huge hand heading at speed toward my aching back and amazingly even before her hand landed I yelled out in pain, the pain I had felt was real but only to me. Anticipation is a mighty good catalyst of false feelings.
Could it be that the feeling I get while walking the corridors at the hospital is kin to anticipation? It is all so psychological and suddenly it is all as clear as mud.
I have just noticed that it is snowing quite a lot, watching the snow falling makes me tired, so I have closed the curtains. I am trying to type but today I am so slow fatigue has set in and I think it is time for a rest. I feel a great sense of heightened input today, even the feel of my arms on he desk to the feeling of my sweatshirt sleeves are highly annoying. Perhaps a cup of hot tea will do the trick.
I do hate to brag, but I will. At last I have found a way of placing our kettle back on the base unit in a more elegant and safe manner. I know I have the dexterity of a Penguin wrapped in duct tape but if I hold my arm out to pick the kettle up of the base, and swing the upper part of my torso until the spout is over the cup then pour and swing carefully back it ends up back over the electric connector on the base, then its just a matter of a gentle touch down and mission accomplished.
I dislike being like I am so much I will my-self daily to attempt at least one thing a week that I have problems with and placing the kettle back on the base unit was a problem in that I would very often miss the connector and it would tip over or get scratched at the bottom and that looks awful doesn't it? Not to mention the frustration of it all.
This problem of not knowing where edges are or could be is not going to defeat me, I will out wit my brain back into the real world, I miss driving so very much and thinking of it makes me rather depressed.
After the death of my mother about ten years ago, I have forgotten what year but I remember the day quite clearly, I suffered from severe depression there had been family trouble before her death and the way it happened was too much for my system. The result was as I said depression, I got over that loss and I was coping quite well. I attained an honours degree and was well on my way back to get a master degree. Now I have another loss to deal with, however the depressive feeling is different than that due to the loss of my mum, my best mate.
The desire to get through this fades now and again in sea of troubles and woes; I bemoan my fate to my computer, cat, and the ears of the staff at the day centre I attend.
I make myself sick sometimes and even as I am writing this, a voice inside me asks why and what for. The feeling of embarrassment I experience is almost shameful. I catch myself thinking just whom the hell do you think you are to be writing this way? And what is more, I cannot or could not in a million years tell you why I feel this way.
Believe this or not, I am experiencing an anxiety attack right now. I have a lump in the lower part of my throat, it feels very real but I know it is not so I am breathing slowly but deeply as I am typing. I know what caused this to occur, it was just thinking about the way I feel about this writing I am doing. My throat is dry and I am shaking. It is very strange what a thought can do to you. Just like watching a film I suppose, some individual get so engrossed in a film that their pulse and heart rate increases at the climatic moments in the story, also some people become so emotionally engrossed that they cry. I suppose these feelings that I experience are self-perpetuating as for every time I think about it I will feel awful and worry about it even more.
It could go the other way as I am hoping and by experiencing these alien feelings and thoughts that I will be able to over come them.
I say this in total earnest and believe it right now, but who knows what I will feel like when another worrying thought comes to my attention.
After testing my blood sugar levels I find that they are quite high. I administer my dose of insulin. I have found that since the accident I have little warning of an on-coming hypoglycaemic turn. This means I need to replenish my glucose supply else I blackout and go into a comer. I wonder why this is?
Usually I know by the usual signs, one becomes hungry, you begin to shake and have cold sweats other diabetics will more than likely have their own tell tale signs individual and unique to themselves but generally there are a few common symptoms such as hunger and tiredness.
I just have to be that little more careful but it is difficult as I feel now that during the day should I go out that I had best not take my morning dose just in case. I feel much safer and it seems to work out nicely.
In the morning I have to visit Frenchay Hospital in Bristol to see someone about something. I have been told many times today but I seem unable to find the file from memory, so to speak. I think it is because today I feel run down and fatigued. It has been cold and my functioning on a pretty low level. I have been sat here wearing a sweatshirt seated next to the radiator and still I am cold. I have the journey to Frenchay hospital tomorrow and I am not looking forward to it much. My mind is buzzing with thoughts and I am really just plodding along. I feel as if all I am doing is rambling and not making any sense at all.
The computer screen makes my eyes dry so I have dropped some false tears in to combat the problem. Here comes a moaning session I fear and a little experiment to try and combat my eyes distracting me because of the flickering of the screen. It looks like the screen does when the television has lost the channel. (Usually at the crucial point of the film, or a winning goal.)
Anyhow here goes.
I have tried switching off the monitor while typing and so far, so good. I am one of those people that cannot afford to take one's eyes from the keyboard. I can always use the spell checker later.
Actually it does seem to be helping my eyestrain for the want of a better description. It does seem strange not to be able to glance up now and again, but I am finding that now the screen has become still my eyes feel under less tension. Now I will turn the screen back on as I find that the longer I am typing the more ridiculous mistakes I think I am making.
Well that gave the old grey matter a kicking, now I feel bushed. After a while one tends to forget what has been written and in my case the letter "T" sticks on my keypad so I cannot tell if it had or not. I think that anyone would have problems after a while, not just a brain-injured individual. After that prognosis I feel better about it, not.
Every time I hear the advice that time is a great healer I heave a great sigh as if the troubles of the world rest on my shoulders. I feel like this because I am impatient and as hard as I try to disguise how irritable and frustrated I am, the worse it gets for my inner self to cope with.
That's it I am going to have to go to bed, I have no brain left goodnight computer.
All this has me wondering just how much of what is wrong is psychological, if it is then I can do something about it relatively quickly if it is organic, such as a damaged area of the brain perhaps not.
I feel as though I should not have read all that about derealisation and Capgras and depersonalisation. I am interrogating inner self again and this feeling that I should be somewhere else doing something else is always within my mind, I have tried to shake it and failed as yet. Perhaps it is due to my day at the day unit and it is bitterly cold outside, not even my study feels that warm and my desk is right up against the radiator so that I am always sat next to it. I despise being cold.
It is Friday morning and today I visit Dr Bird at the Burden Centre at Frenchay hospital in Bristol. Although it is an afternoon appointment we leave I am told at one thirty so that if there are any delays whatever the reason, we will be early.
My partner has woken me with a cup of tea and the one of our cats is sat on my arm and it is dead. As I go through the morning ritual of thought processing I get confused and just cannot for the life of me remember where we are going.
At times such as these I have become lazy, I just go along with whatever, as I know I will be guided through the day. First, I have to shower but I do not want to go into the bathroom so I hang about drinking tea and playing with the cat. In the process I completely lose track of what I supposed to be doing. I hear my name being called and I am told to shower, so I try going into the bathroom with the cat, which helps me as I feel that as cats are highly tuned creatures, if anything was wrong in the bathroom the cat would feel this and not enter. Now, this is hard for me to admit especially in black and white as I suppose I could be signing myself into a straight jacket, however I do need help with these feelings as they are inhibiting in many ways.
At last I shower and I am safe with the cat back in the bedroom. For the last few days I have felt rather toffee like and isolated from the environment I get this quite a lot, as I am sure I have mentioned.
My partner calls to me that a cup of tea is on the table for me in the kitchen so I dress as quick as I can. As I walk down he stairs my feet hurt, I am used to this feeling now and know that it is because my trainers are on the wrong feet again, so I rectify the problem before I break my neck.
At least it was only my trainers today, I have put my underwear on correctly as my partner bought me some with small pictures on the front. I do think that the pictures could have been more suited to my character, I think Piglet and crew does me no justice in the credibility stakes, but hey who will know right?
We are taking a packed lunch today and a flask of coffee as I have had insulin early. The weather is quite bad we have had snow, we decide to travel the safest route I am glad to say, I hate travelling in motor vehicles especially around bends and narrow lanes in the snow. I think I may have a heart attack just thinking about all this has made me tired.
The journey is over the one way, we arrived early enough for me to recover slightly but by the time we saw Dr Bird fatigue was setting in and I had an awful time of it in the waiting area, I started to panic.
It makes me so furious that I can not control my own emotions anymore. I have always since leaving my family home controlled my own emotions I was in control up until this fall and now I am faced with all kinds of controlling symptoms that I have to give in to such as this inappropriate laughter and it is for no reason. None what so ever and further more it is embarrassing and can happen at anytime. Usually an inconvenient one at that and today was no exception.
I took an instant dislike to the feel of the building, it felt sinister and cluttered, I felt very closed in. I tried to console myself by analysing what was going on in my head, I say my head but my whole body feels uneasy for being here and I want to leave.
My partner is getting worried I can tell so I try to control my feelings and calm down. I have no reason for the way I felt but I had this dread of impending doom and at one point I jumped up and said I was leaving. I find it hard to stop myself doing it. The only way I can describe what happens and the feelings that I experience at that time is utter fear and I have to get people out and myself. Logic does not come into it without a fight, it is very fatiguing and I feel stupid about it all at the same time, then I get hungry and I feel weak, then all I want to do is sleep.
But, along with these feelings today, I also had another visitor from within a symptom I thought I had seen the last of, unreasonable and inappropriate bouts of hysterical, unstoppable laughter.
After I had inspected the vents in the ceiling and paced about I sat next to my partner where I knew I would feel much better. As I did so a gentleman walked around the corner, I looked directly at him and fell helplessly into hysterical laughter. What was worse five minutes and just as I was forcing my jacket into my mouth while tears streamed down my face, he came back and the same event took place. How rude did he think I was, to make it even worse the poor chap was obviously not well and had also had a head injury. My partner was hysterical too as laughter is contagious, between trying to shut me up and stop laughing there was little one could do but hope hat I did not end up being confronted for being so rude or punched at least.
We had just seconds to calm down as Dr Bird walked around the corner I felt that a quick explanation I felt was appropriate and tried to explain without exploding into laughter again. I was hurting and out of breath at this point I dare not look at my partner or her at me. Unperturbed at this Dr Bird took it all in his stride.
I do not recall much about what took place, however I do remember being a little confused as I thought at one point that we were in a police station or a bank at the time I could not decide which so I did my usual and played it by ear.
I have decided to send a copy of this to Dr Bird as he says that it would be handy, I think it would probably double up as a sedative or comatose if one reads it all.
I went straight to sleep once back home and I have had such a headache since. It is the headache that feels like as if I have burnt skin on my head. It feels as if there are red-hot needles, millions of then under my skin on my head trying to burst out from beneath. My temples are throbbing and my eyes are heavy I am confused and can hardly move. Once in bed I slept without waking until the morning.
I sit here trying to type and put my thoughts into words, I am feeling it is a struggle today. I am wearing my earplugs and I have darkened the monitor.
The keys on the keyboard seem to be jumbled up today even with the earplugs, which are a little annoying but they do help.
Over coffee this morning my partner enlightens me by filling in the blanks about the visit to Frenchay hospital the day before. Although I am not really paying attention I do hear and grasp some of what was being said.
All I want to do right now is feel real, I have this urgency within me and I have no clue as to why. I ask if there is anything important happening and I am told there is not, so why am I feeling like this?
I feel as there is something I must be doing, I try to let it go but it is a strong feeling, enough to distract my already over loaded brain. I help around the house with the daily chores such as dusting and general cleaning. I think that today not a lot else will get done other than some typing away on the computer. I like a good moan but this headache is getting worse as the hour ticks by, I think I will close my eyes for a while and come back to this I feel irritable and jumpy.
It is Sunday today and no prizes for guessing who slept through? Another day wasted and today feels very much the same. I sit here with my earplugs in trying to put some thoughts down but the pain I have in my head is getting worse, its very irritating.
I am not giving in to it there has to be a point in my life where I will be able to function through these problems, although I have not noticed any major changes. I still find myself holding my limbs at awkward angles while trying to concentrate and I still am unable to cope with multi-tasking without getting severe pains in my head. The confusion is still prevalent and toffee days still occur, am I expecting too much?
Surely it is time that things altered; still I am glad that I can still write. I used to research and write most of my spare time and I miss it, however this is good therapy, am I repeating myself? I think so; in fact I feel as if I should pack it in right now and have a long break. I am feeling rather blank and miserable and unable to concentrate on what I am doing. Roll on tomorrow.
March the 18th
Now I am buggered, as I cannot for the life of me think how long ago it was I wrote the last entry. It would seem that I have had a time laps again. So now I am thinking, where the hell have I been and what did I do since I went to Frenchay hospital.
It makes my head hurt just thinking about it. I have read back the last few pages and I still cannot think what has happened since. Okay, now you will see how brain injured patients recall memories. (Sits blankly looking at the screen hands being wrung like old sheets)
So, what day is it? It must be Friday because yesterday I was asked to go into the post office on my own, while my partner waited in the car outside and get some electricity, gas and pay the phone and we always do that on a Thursday. So what day did we go to Bristol for god's sake? (Blinks in disbelief)
I have had to give in and ask my partner what happened in between going to the hospital in Bristol and today. I am upset and feel empty headed I cannot accept that I thought that I cannot recall that it was last week that we went.
I cannot really explain how I thought that it was only a couple of days ago but logic tells me that if it is Friday today we must have gone last Friday as there is only one Friday per week.
I think I am going mad and now I am really feeling upset with myself. That is annoying and frustrating and stupid. The stupid thing is, I read back over what had been written and I had typed in it was on a Friday.
Right, I know what happened today so let me garble on about our day out. It rained, we went shopping after going to but a new rug for the kitchen and a throw for the new three piece. I threw a wobbly in one of the shops because there were too many people and desperately needed to get out. I became wet through as I zigzagged for the car and the skies opened up, down came the rain, only to find the car was parked way up the other end to where I had zigzagged.
In the rain I find it hard to function, my balance is somewhat unstable and all my senses come alive, the rain stings and the wind blows I start shivering and before you can say "Bloody weather" I am totally fatigued and walking as if I have emptied a bottle of vodka in one mouthful.
Never mind, I made it to the car and once inside my nerves gave way and I started to shake. At this point I cannot decide if I actually want to sit on my own, so I get out. I stand there for a while then get back inside. Then out then in. Then back out actually managing to lock the doors took one step away turned back and opened them again and got back in.
I sat there for a while contemplating if I should go back inside the store and wait for my partner outside the checkout. I wrestled with this idea for what seemed ages. I did not look at the time as the ignition was off and I get confused with the switches on this ignition. We had this car after my accident and have never become familiar with its controls so I did not want to potter with it in-case I did something wrong.
I calmed myself down with a smoke and sat there contemplating my next move. I really did not want to go back in, I had become agitated and irritable by the flow of people. It seemed like I was drowning in a sea of bodies as I was bumped and moved trying to walk was too much for me and my brain was throbbing and so hot one could have cooked an egg on it.
In the end I managed to get out of the car and wait outside the entrance. I am not sure how long I waited but I was so glad to see that familiar smiling face hobbling toward me, complete with rug over shoulder.
I took charge of the rug and hopped like a happy bunny to the car only to find that the rug was too big for the boot and the car, so we had to fold it in four in the rain, what a day, and so, off to Asda.
As I have mentioned I am sure, my partner is disabled and sometimes finds it necessary to hire an in-store mobility scooter. We did a limited shop as we were both tired and soon were back outside at the car. I took the opportunity to test out my driving skills and guess what? I managed to avoid hitting anything, however the battery was just about to go and it had a top speed of 1 mile per light year, that's 0 to 60 in twelve years, not bad on the flat.
It is Friday today, a new day and a surprise that today is Friday as I thought it was Friday yesterday and assumed that it was Saturday morning. It is today that I get a Playstation 2 and eye toy game plus a driving football game.
The idea is that I get my coordination skills going and hopefully get more exercise. Gravity can sometimes be unkind I hate moving about rapidly.
Since arriving home from hospital I have discovered that my arms and legs move independently and I find it difficult riding an exercise bicycle. I start off well but suddenly my left is totally out of synchrony with my right and I throw my self over the handlebars. I just wonder how I am going to cope with the eye toy?
It is the 21st of March today, I have just checked on the computer calendar. It does not seem like a Sunday as I have had quite a busy time today and Saturday is a blur as I had been re-potting sweet peppers and playing who wants to be a millionaire with Jaci. It is quite tiring and I am slow to answer, as I have to repeat the questions in my mind, as they tend to be quite long. I am far better on questions that are shorter.
Mark has been to visit today. I am always glad to see him, we tend to chat and play on the PS1. We like the shoot them up games, as it is not as taxing on the grey matter and driving games are the same, just something to vegetate to and again as with my other games I am not as good as I used to be.
I am surprised at my success on the eye toy; I seem to be able to cope with interacting with it more than using a keypad controller. I suppose this is due to the fact that I am interacting as a whole and not just using my hands and eyes. It seems to be giving me a lot more fun than normal exercising and doing the same job.
Monday morning came and went and I slept through until late I think it was about eleven thirty when I got up. It must have exhausted me yesterday on the Eye toy and today I cannot keep awake, I had to go back to bed around three and slept until six in the evening.
I have made many mistakes today and I have become aware of other malfunctions, for example my speech seems to be slow and slurry and I have been getting words muddled and giving sentences which are incorrect and without meaning. I feel so lethargic my limbs feel heavy and I really need to sleep. First I have to take a bath, I have put it off since Friday I think? I had showers instead but I feel that if I give in to not taking a bath I will only be making things more difficult. The problem with taking a shower is that my favourite cat Spliffy will not come in to the bathroom and I dislike going in alone.
Tomorrow I have to go to the hospital in Cardiff and I am not looking forward to the journey. The car ride is taxing there has to be a way around this. I am guessing but being shy of a good theory I came to the conclusion that I have to cut down on incoming information somehow as I tend to think that most of my problems occur due to some kind of over load in the sorting office in my head. I think I will have a chat to a staff member about this as they are full of good ideas and bound to come up with something.
Tuesday morning arrives again, my alarm clock is screaming at me to get up
I have a strange feeling that things were going to feel odder than usual today, as it was it turned out quite a day.
I got out of bed feeling miserable and irritable. I have been feeling rather down as of late but I have become quite good at hiding it as I just feel as though I moan considerably and probably do.
I know exactly what the problem is but it is another thing trying to put things right and if one more person tells me how lucky I am not to have had considerably more damage and that other people are worse off I will scream.
I was slow to get dressed my hair remained the same as the night before, just a few prods here and there flick the front down and it is done a right mess but quiet fashionable I convince myself in the mirror.
The ride to Cardiff was quite taxing as usual, however I had one of my favourite drivers today and he has a very nice car.
I stared out of the window at the world whizzing by at a million miles per hour wondering what was flashing by? It was another car. I can make out what things are when they are moving away from me as they seem slower somehow but it does not stop me feeling that nothing is real, I have a feeling that it will never go away however I cope with it more these days.
Looking at the hills and mountains in the distance I have the feel that it is for the first time I have experienced the wonderful scenery but I know better.
The sensation of actually seeing it all moving is making me somewhat dizzy. I feel as if I am seeing things in segments rather than as a whole also a strange phenomenon that I now treat as normal. I did say it is just a feeling I have on the actual eyeball, nothing really but the feeling is there sometimes, more so when I become tired, I gaze back out of the side window.
There are the mountains in the background all moving the same speed then a little closer the hills are moving just that much faster. The sky and clouds above, they look like holograms and tend to seem either static against the blue sky or non-existent if it is raining as the rain impairs my vision.
As things get closer they tend to blend into streams of blurry images. The strange thing is I keep wondering and looking and next thing I recall is waking up. It is all too much for my tired and battered brain to handle and so I sleep away the journey.
This afternoon I have physiotherapy and after this morning's journey it takes half the day to revive so I am relieved to have a few hours to sort my head out. I am not sure what else I did that day as I had left my daily personal organizer (note book and pen) at home.
Sometime during this week my partner was called upon to set up a video system for a neighbour. I not wanting to get in the way stayed at home, after a while there was a knock at the door, reluctantly I opened it to find that our neighbour's husband looking rather sheepish, my partner needed some help so I went around too.
As I walked in the chatter between the three of them and the television set was too much. I tried my hardest to listen but soon I became unsteady on my feet, my speech started to slow down and become slurry.
I felt as if my head was going around in circles I had to get out, I made a guess at the channel was out, made my excuses and bolted for the door.
Very much the same has happened at t