update

Wow! It's been a while since I've been on here. Probably because I've tried blogging on other sites. I'm now trying this app for Blogger to see if it works.

Dreams turn to dust. For now, anyway

Sunrise on a normal day. A 16 year old student heads into school. Today was the day she was meeting with a careers advisor. For some, it would go well, they would be given advice, booklets, leaflets to read, and would probably receive a job at the end of it. This day however, was not going to be ordinary at all. No leaflets, no books, nothing. You guessed right. Literally, Nothing. Her dream was to become an instantaneous language interpreter, like she’d heard on the news. The ones that speak through headphones at the UN summits etc. She walked into the room, guided by her support worker. Unenthusiastically, they sat next to the too, unenthusiastic advisor. They began with the usual hello, then carried on. She was told, that a language interpreter was a good career goal, but not one she could “realistically” achieve. She would be given an idea, to look at books in the careers library. Fast-forward a few years later, and she is in the local college. Sitting at her desk, having only scraped one high graded GCSE, and now on her second of 2 years of (in her opinion) wasted time, she contemplates. Her mind wandering from the task in hand. Could it be possible? Could I be a singer? She wanted to go to music school. Again, this career was going to be crushed. A year later, whilst at the next of her colleges, she looks at the OU. The degree that may save her. Health and social care? There is a question mark over this, says her advisor, it requires vision. You need vision for this field. Here we go again. Another idea she takes, taken from her grasp. Moments later, she finds a psychology with counselling degree. She has now embarked on it, and is in her second year. That person, who is now 22, is me. I am in my second year. I tried finding those jobs, those options, had them taken from me. Had them knocked back. I wished to go into neuropsychology, but yet again, that was (too visual!) That word keeps appearing. Visual. Visual. Visual. Visual. Like a nasty echo that won’t go away. It’s on loop. If neuropsychology isn’t an option, neurorehabilitation is. Speech and language therapy, is my final attempt. I am not given up! I’m now getting told they are visual!! This time, You will not knock me! If Bolotin can do it, when he was alive in his time, then why can’t I? Why can’t I achieve! Let me! Let me try and break those barriers! No other blind person has tried to become a speech and language therapist and succeeded, as far as I know. Why can’t I be the first? Let me please try to break down those visual barriers! I have been brought up to be determined. Please, give me a chance. When I qualify, let me try. That’s all I ask!

A sense of Loss

Yesterday; a normal day. I headed off to vocal lessons, and was in the middle of my lesson, when there was a tentitive knock at the door. “Who is it?” I asked, and the room was silent. The person walked in, and began to speak. The voice, distorted, almost in one pitch, but rising up and down, in a way that told me, something was not quite right. It was slightly incoherent, slurred, and fragile. Her tone, rising and falling, with strenuous and intense effort. It was as if, she had to be concentrating intensely. The syllables strung together, with difficulty. Articulation seemed difficult, and I gathered, her Broca's area, was not working too well. O goodness! I thought. I immediately knew the signs and symptoms. Perhaps, she’d had a stroke, or suffers from vascular dementia? This was a “crash course” for me. I was now learning, in those few minutes, how time can change someone, from the person I once knew, even briefly, to who they are now. Fragile, weak, slightly incoherent, still somewhat with us, but not totally. Knew what they wanted to say, managed to convey it, but with great difficulty. I felt a sense of loss. A sense of loneliness, sadness, that the person was rapidly vanishing. Time has done so much, changed them for the worst. My emotions changed, from happiness, to deep empathy, warmth, sadness, and loss. I was almost on the verge of tears. The atmosphere, slightly uncomfortable, colder, unnerving, slightly strained. I did not know what to think, what to feel, what to say. Those few minutes, had taught me so much, and now I had to sing. Emotional still, over what I had just heard, as the door closed, and the room became silent once more, I waited. The door, like an end to a scene, but one, that will stay with me, for a while. For a few seconds, the silence was all too present, then, it was interrupted by my vocal teacher, “Come on then.” then his playing resumed. I began to sing, one of the most loved songs, “Time to Say Goodbye” Perhaps that lady walking in, was meant to be, perhaps I was meant to be singing this, to her? perhaps, I was meant to feel like this? I was meant to do something. Feeling that sense of loss still, I carried on, and at the end, said goodbye, and left with Nan. I thought to myself, what a difference time can do. What a difference 3 or 4 years makes. How time, can change things. What a sense of loss.

Another lovely surprise, and one that could potentially be good.

Today, I received an email, from a neuropsychologist, explaining a lot more than anyone has. Yes, it will be hard, but I do not care. I am determined to get into neuropsychology or neurorehabilitation. There will be barriers, they must be broken. I have no sight, but so what? There are things in life we must fight for, and my career, is one of them. I do not want to be another person to add to statistics. Another person without sight, who is on benefits, and job seekers. No way! I would like a job, one in the NHS! To be a psychologist, or specialise in neurorehabilitation. A job that will earn me money. Most of all, one that I enjoy, and that will be useful to others. I wish to hear the joy in other peoples' voices, when they achieve. To encourage, and to support. I will struggle, will find the mountain hard to climb, but when I get to the summit, it will all be worth it in the end.

so my second year begins

Although my second year of University doesn't officially begin until October 3rd, I'm already beginning too get stuck into the module. I've already completed week one, and have made notes on the material. I have also saved the glossary for offline reference, should I need it. One thing is for certain, this module is going to be far better than the other one. I won't have to, metaphorically, be constantly obsessed with city Road, and consumer advertising. There is on this module, a lot more about the brain, etc, which I am looking forward too.

Inspiration from the BBC

Another day. I was on Twitter, browsing through the posts, when a post from HeadWay caught my attention. It was about a programme that was to be shown on BBC3, entitled "Me and My New Brain" detailing the lives of young people, who have sustained TBIs, (traumatic Brain Injuries) It showed the rehabilitation they went through, speaking, walking, learning to put their head up, to keep it there, standing, sitting, eating, feeding yourself, washing, brushing teeth, making decisions, coming to terms with your brain injuries, the after affects, consequences, what life will hold now, and most of all, getting rid of the barriers. I suddenly decided, "Wow! I'd love to show people how to use things again, to speak, to walk unaided, to stand properly, to be able to think of the right words to form phrases properly, to sing, to appreciate things, to pick things up, hold them, would love to share their joy at their achievements, be there for them, when they take a few steps back, feel their frustration with them. Help them come to terms with their conditions, even helping them with emotion etc." I immediately emailed someone I know very well, and asked them, would that be a good path to go down? seen as Neuropsychology seemed visual, and slightly harder for me to get into? The answers, were: something along the lines of, that it would be a good option yes. I could still do my BSC(Hons) that I'm doing right now, then do a masters in psychotherapy and psychoanalysis, as well as a PHD, in something to do with Epilepsy, PNES, etc. I would also love to study, along the side, a bit to do with speech, so that I know, if I was to teach people how to speak, how to do it correctly. Surely you don't need a whole degree for that? I'd rather not.. :) I'm at an advantage anyway, as I have my acute sense of hearing, as I do not have vision, so I'm able to hear if they are not forming the vowels correctly. I can pick up accents extremely well, mimic them very well too, and can also sing. Perhaps even, my musical ability will come in useful with them too. Singing, would help them to build up on tone of voice, instead of the monotonous tone, that in my opinion, can be fixed, or at least, worked around. I know though, there is a condition called Aphasia, where people can't speak properly, get stuck on certain phrases, will say certain phrases over and over, in a monotonous tone. They know that it's happening, they can hear it, but find it difficult to control. It must be hard for them. I wonder what life is like, for someone with a brain injury? We see it on the television, but we don't walk with them, follow them everywhere, go where they go, watch or in my case listen, to how they do things, how people react towards them. We should. Actually make the effort to go with someone one day, where ever they are going. Follow them, listen, observe. Ask them questions, if they want too, they'll answer. Help them when they request, or seem like, they need it. Observe how members of the public are towards them. People should not be excluded and should be tolerated. Yes, they may have suffered a TBI, but does that matter? They are the same as we are. Exactly. Their brain, is just, well, different. Different, but cool, and interesting. Let's go on the exciting adventure, that is, interacting with them. I don't see it as a challenge, I would see it as, something interesting, and exciting. Perhaps, it would lead to new friendships if we let it.

Growing up in a "Sighted" World

A lot of people have asked me such questions as: How do you know what colour is? Can you see light? Can you see at all? How can you read? How do you write? How do you get around on your own? I couldn’t do that. Do you dream? Do you dream as we do, or differently? I’ll tell you.I have lived with my Grandmother since about 3 months old. When I was a baby, she would get toys that had a sound to them, such as rattles, even teddybears with different fur or teddies that sung, or even teddybears that rattled, or had a scent to them. I particularly remember one, that had coco beans in it. Thus, he was named, Coco. He was a mini teddy, so was roughly about a foot tall, maybe less. His fur was fluffy, and longish. He sat on my dresser, next to my shelving. When it came to night and day, Nana would tell me: “It’s night time, when there are no birds singing, and there’s no traffic going up the road. The air is also colder.” This, I understood to be night. Day, I established, was when Nana came to wake me every morning, to take me to school, or to my aunts, as my Aunt would take me to school, while Nan went to work. The task for Nan was not that difficult. At least, she never made it so. She had plenty of experience. Her nan went blind, but due to macular degeneration. She knew colour though, knew night and day, knew sun rise and sun set, knew seasons changing, knew lightning, knew the colour of the sea, the colour of grass, of the sky, but I knew nothing of this. I only knew it, through texture, smell, touch, hearing, and taste. Nana was going to teach me the seasons, via smell and texture, as well as touch. It was a cold September morning, and I remember heading over to my Great Granddad’s, where we would receive a lift to school, and she said to me: “What season do you think it is now? We’re walking through crunchy leaves. It’s cold, what can you smell?” I replied “Autumn?” Spring, was the coming in of April, and the April showers, as well as flowers blooming, lambs being born, and other things. Summer was the hot sunny weather, (usually) ice-cream vans, playing Green Sleeves as they drove past, with a Doppler effect, Autumn, was the falling of leaves, and conkers, as well as the smell of old trees, Winter was the crisp frosty days, ice cold winds, snow, and of course, Bonfire Night, and Christmas, as well as the end of the year. The way Nana taught me colour, was again through texture, and all my other senses. Grass, was the smell of the grass, which was Green. The water of the sea, represented blue, it being cold, and blue was a “cold” colour. Yellow, was the sun, a “warmer” colour. Black, a sort of dark, “miserable” colour, associated with mourning, rain clouds, storms, and other things. Grey was a dull day, with no sun and just clouds. Meaning it was cold outside, or rain was on the way. Orange, was obviously an orange. Purple, was a moody kind of colour, representing stress, or anger, or frustration. It was also quite a bright colour too. Though i would not know “bright” in the sighted world’s terms. White, was just like clear transparent glass, see through, smooth in texture. It could also maybe be white chocolate? Brown, was the colour of chocolate, but also a mucky kind of colour. Red, meant Danger, heat, and anger. It was a threatening kind of colour. In answer to the question, do I dream in music? I would not know, but if I hear a piece of music on the television or radio, and I seem to have a deja vu kind of feeling toward it, then yes, I suppose. I might say: I remember hearing that, even though I may never have heard it before. It’s not that hard to get around on my own. I use a cane, but do not get much assistance. I have to ask for it. I keep saying to those who have lost their sight, please, remember this. You knew colour, you knew peoples’ faces, knew the sea, could see the waves rippling across the surface of calm glass on nice sunny days. I never could. I never will. You had something, you will miss it yes. I can’t imagine losing something you depend on, but you just have to move on. Speak to people who have lived all their lives without any light perception, without any sight at all. Not even the colour black, nothing. Just opaque purly mist. All those with sight, blind fold yourselves for a few hours, walk around, without any light perception at all, and see if your mood changes. Dedication To my lovely Nana, without you, I would never be the person I am today, and that I mean. I would not be doing a university degree, I would not be reading braille, writing on a computer, I would not know colour, or be able to tell seasons apart, would not know as much as you taught me. You never cried out for help, you just learned yourself. Got on with the task. Thought of your own strategies. I thank you from the bottom of my heart. I mean this very much. Still now, you urge me to keep doing things, being more independent, relying less on others, even with the added epilepsy, but even that you don’t let worry you. You could stop me going out if you wanted, worry I’ll have seizures, even though they are controlled, or worry that I might bash into something, but you do not. You just have faith, knowing I have enough common sense. I love you always. I always will. Thank you. Samantha :)

It's been a while.

Hello. It's been a while since I've been on here, as I'm switching back and forth, from this blog to my wordpress one. Trying to find my way round the WordPress one is proving more difficult than I imagined, but I'm trying. On the epilepsy front, everything's fine so far. I'm almost a year free, and my meds is working well. There are the annoying perhaps, arm tremors, which are quite embarrassing, but I can deal with them. I guess that's all to say at the moment. If any more interesting events happen, I shall report back. :)

The cold that lingered.

Since December, I have had the cold that lingered. As you know, I went to my Britain’s got Talent Audition, which went quite badly, but after that, things took a turn for the worst. I thought, after the first two weeks in December, I was over the worst of the chest infection, as my breathing had returned to normal. The antibiotics I had been given, had helped. This however, was not to be the case. I suddenly developed pain in my larynx. I could not speak, or swallow properly. This was the start, of viral laryngitis. A singer’s nightmare. On strict vocal rest, I was not to sing for at least four or five weeks. I could deal with that. That was fine, but what happened next, was one of the most frightening experiences, I will ever deal with. The nebuliser experience. Welcome to the world of an asthmatic. Saturday fourth January 2015. I got up that morning, with a slight cough. It had been brewing for a while, and I was hoping against hope, that it would not be the cold returning. It sadly was. That day I developed a slight irritable throat, and I knew what was to come, but knew nothing of how bad it would be. Sunday fifth January 2015. Morning, and I go to take my Epilim. Afterwards, I head back to bed. A coughing spasm takes hold, and I can do nothing to stop it. I could feel everything rattling around in the area between my back and shoulderBlades, my chest vibrating with every breath. This, was not a good sign, as what would come, would lead to me either dry retching, or bringing back my Epilim. In distress, I tried to suppress the urges, but they became increasingly more violent. I needed to get rid of what was there, but with every attempt to breathe in, I could feel it catching on my breath, stopping me getting a decent breath. Gasping for air, and crying out in distress, I carried on dealing with the situation as best I could, trying to tell myself to relax, to try and breathe through my nose. This wasn’t working. Eventually, I retched, and felt everything move, but still, could not get rid of it. This, was how it ended up all day. Breathless, I carried on with my day, eating what little I could without coughing, drinking what I could, and going for a bath, to inhale steam. Monday morning; 02:20 hours; I suddenly awaken, struggling for breath. Literally gasping for air, I tried to shout out to the next room, even just a cry of distress, but all that came out was a violent cough, then, a huge coughing spasm. I could not get a breath between coughs. In the end, I gasped for air, and had to take short laboured breaths. I texted my friend in America, and told him: “I can’t breathe!” his response was short, and rapid. “Tell Nan, and consider calling an ambulance!” With that, sweating, and distressed, I went to Nana, and told her quite calmly, “I can’t breathe” Helping me to the bed, she went downstairs, and called for an ambulance. The paramedics came, and checked my sats, (saturation levels) which were dropping from 96 percent, to 93. I was taken to the hospital, where I was assessed. The doctor was Spanish. Immediately, I began to cough. “Come on, I can hear it Samantha. It’s there. You need to get it up. Come on.” he encouraged. Scared I would choke on my own phlegm, I kept trying to suppress it. I knew I was in the right place should anything kick off, but I’d had enough. My back, diaphragm, chest, and shoulders hurt. “No! No! I don’t want too! I can’t! I’ll be sick if I do!” his response was calm. “So what?” In the end, I had to get help. It was time for me to experience a nebuliser. It’s a little bit like an inhaler, but more powerful, and contains oxygen, as well as saline solution. They gave me it, and I breathed in the vapour. It got rid of most of it, but my heart rate was still rather fast, in sinus tachycardia, (fast, but nothing to worry about.) Although, my experience was not over. I had to use the oxygen a second time, as I had yet another attack. Coughing, and retching, I was gasping for air, my eyes streaming. Finally, after a long and terrifying 6 hours or so, I was sent home, with an inhaler, and antibiotics again. Now, my GP has put me on a steroid inhaler, Pulmicort, to prevent me from going into coughing spasms. Should it work this winter, I will be placed on it next year,should I develop the same respiratory difficulties, as my lungs will always be my weakest area, due to me being born so premature. I wish to point out though, that I am not asthmatic.

My way of thinking has changed, for the better.

October 2011, and a somewhat spoilt, selfish, but nervous person, is about to leave her home, and leap completely into the unknown. What is she going to expect? How will she behave? What challenges are about to be thrown at her? The first, was a long, and tiring journey from her home in the Isle of Man, to a college in Hereford. It was time to say the final goodbye to her relatives. Tears in her eyes, she walked away from them, their voices fading away, as they turned, to leave the building. Accompanied by a friend, or so she thought, she headed to their room, where her friend made her a cup of tea. Still in tears, she drank it, and walked downstairs. Entered, slowly, and quietly, into her large and spacious room. So, this was being away from home. Maybe it was all a dream? Maybe I'd wake up in the morning, and I'd still be home. Maybe, just maybe.... Lectures, and it was the end of the day. the menu was read out. "I don't like the sound of any of that!" she exclaims. Bursting into tears once more. A Liverpool accent, and the person next to her makes her even more emotional. "Why do you have to remind me of home!" Liverpool, is so close. That was the start, of a close friendship with one of my favourite tutors at that college, who supported me through a great deal. But why is this all so important you may wonder? How did i behave? How is my behaviour different to now? The answer, is about to be revealed. Over the next few days, my emotions were tested to their limits, people drinking alcohol under age.I did not tolerate this. People swearing. Again, I did not tolerate this. Immature behaviour, and talk of premature relationships, instead of studying. This, I most definitely was not a fan of. Boys especially, and then the girls, starting it as well. At first they had all been kind to me, but they were changing. Why were they changing? I refused, to accept, and was unaware, that it was me, yes me all along, that was causing this. I was the "odd one out" I was Sam. Sam Ash, the one everyone "really" disliked! At least, I made myself so. I chose to be so. But why did I choose to be so? The answer, my "0 tolerance policy" I had one friend at least, but I wanted more friends. They were all disappearing from me. Why! If I caught them doing something they should not be doing, I would report them for it, or if they said to me they were meeting me at a certain time, and did not turn up, I would, I suppose, "stalk" them, until they gave me a valid reason. This was the start of the CBT Journey. Me? Counselling? I don't need that rubbish! I thought. I don't need someone telling me how to think, I thought they were only for people that had problems. Psychiatric problems. I didn't have a psychiatric problem. I didn't! I really didn't! This showed how little I knew of counselling, and what a valuable experience it would turn out to be. CBT, Cognitive Behavioural Therapy, is basically a "talking" therapy, where for me at least, the counsellor would talk over the week's events, what I disagreed with, why, and turn the opinion into an agreement. For example: Person 1, has reported me to Person 2 for listening outside their door. Person 2, then asks to see me. I then go to see Person 2, and get all annoyed and upset that I have been reported behind my back to them, by person 1. Even worse, I know who person 1 is, or was. Person 2, then goes and tells person 3, that being the counsellor. So, there's the scenario. Person 3, then asks me how I feel about this. I then tell them, that I feel quite angry, and that I'm constantly being reported. Person 3, then tells me, to think of it this way: Person 1, has told you they are busy, but you are not happy with them in the first place, as they did not tell you straight away. How does person 1 feel, when they have to always be on edge, waiting to be stalked? Waiting for a constant barrage of calls, asking where you are. If you were Person 1, how would you feel? what would you do? This went on, all year, until I finally started to gain the understanding. I became slowly aware. But sadly, my chance was lost. with them at least. Saying goodbye to my counsellor at the end of the 2 years, really never did happen. I wanted too, but was in lectures. She'd already left by the time my lecture had ended. That hurt. I've lost a friend, I've lost a dear person! I've lost someone who I could turn too! In a daze, I rushed from the point4, in tears. Not speaking, I ran down the ramp with my cane, totally out of step, silently sobbing. I'd lost a very very close friend, and a second grandmother to me, or so it felt. Why did I find her this valuable? After all, she was just someone I knew for two years. Why, was I so upset! I had then discovered, a few months later, I had the gift for psychology? Psychology? I would want to do psychology? Not something I considered myself to want to do, until a storyline on Coronation Street came on. There was a man called Nick, who was arguing with his brother in the car. His younger brother took hold of the wheel, and while they struggled, an oncoming lorry hit from behind, striking the driver side of the vehicle. Nick's side, leaving him with a catastrophic and life-changing brain injury. This would have me gripped for the next few months to my TV. Eventually, Nick regained consciousness, but his recovery was slow, and painful. There would be anger, violence, uncontrollable outbursts of anger, frustration, and panic attacks, as well as the relearning to walk, and to talk properly. This, made me set my sights on NeuroPsychology. If I have no sight, why can I not help those who have been diagnosed with a neurological condition, or who are recovering from catastrophic brain injuries like Nick's. I sat there every night, pondering, what would I do, if I was with him? What would I say? how could I help him? I watched everyone on screen going wrong, patronising him, and fussing over him, when he clearly did not want it. His saviour, was Kal, his personal trainer, who helped him overcome his anger issues, and most of his emotional trauma. I would like to see myself in a few years, doing the same thing. Helping those similar to him, and their families, to learn about their conditions, to understand why their personalities will never be as they were, but how they can make the most of life. How they can enjoy life. How they can, and will live life to the full. I'm in my first year of a degree with the oPen University in Psychology with Counselling, so I hope that will at least, start me on the road to success. I'm hoping I'll be able to use my own experience, of being blind from birth, and then being diagnosed with Epilepsy, to help those sufferers of Epilepsy as well. I thank you all for reading this rather long winded post. It's getting late I know. I hope you all enjoyed it anyway :)

Britain's got Talent comes to the Isle of Man

Well all, I haven't written on here in a while. That seems to always be the way doesn't it? It was a Thursday afternoon, when my my aunt came  with the newspaper. She then informed me, that britain's got talent were going to be coming to the island. I immediately went to fill in the application. I auditioned and got through the first round. Now I must sing again, and try to get through this stage

To those who knocked me back.

A letter, to those in my past who knocked me back. Today, 05th October 2014, I sit here, on this stormy night, as the wind blows in gusts around the house. The rain for now has relented, but whether that stays, is another matter. The winds that blow round the house, I suppose, are a testament to how I am feeling at this present time. All these years, I have tried, and tried to do all I am interested in; tried to pass examinations in what I enjoy, for example music, drama, GCSE history, specifically the history of medicine, geography, the module on volcanoes and geology, for example plate tectonics, but all those, I was forbidden to do, under circumstances that could have been changed. My dreams, at first of being a language interpreter, were quashed by careers advisors, my dreams of becoming a singer and heading off to music college, crushed as I would not have the grades, or independence to do so, and the pure fact, no-one, in my school, well, support staff, wanted me to pursue them. I went to The Isle of Man college, and what job prospects were there for me? Office work. I would sit for days on end, imagining me going off to music conservatory, achieving my dream to become a singer, singing on world wide stages, but then realising, that, would never happen, not for now anyway. There was only one other way to go to try and fight for it, and that, was to leave home, for the UK, in order to gain independence skills. As you know from previous blog entries, that was eventful, and ended in disaster. I had failed ASLevels, gained one diploma in ICT, equivalent to 2 ALevels I think, and an A in Spanish GCSE, as well as an NVQ in Spanish. Yes, yes, they are all very well and good, but what did I really want? Degrees, qualifications, letters after my name. I wanted to be recognised, and prove to those, whom I was thought of as, not that great at anything, which I have to admit, I was a bit of a rebel in my school days, i was better than that. I was good at languages, but the traveling to a mainstream university, and staying in student digs, would not be what I wanted, as I feel insecure about drunk behaviour, and because of my epilepsy diagnosis, and being totally blind. Also, there's the fact of being away from the Isle of Man, the small haven of safety. This, was where it was time for the Open University to make its grand entrance. So if this was the way I would go, then so be it. I may not be recognised for some things, but there were unknown talents I had cropping up at Hereford, that I failed to see. Apparently I had the "gift for psychology" ? Gift for psychology? I never thought of it. I was able to help people when they were upset, I'd been to counselling myself, but that was something I practically scoffed at when I was in Hereford. "Me? Counselling? No!" was always my response. That however, has now changed. I'm starting my first module, on a BSC(Hons) degree, in Psychology with counselling, and eventually would love to help people with neurological conditions. Yesterday, as the clock struck midnight, I sat, a mixture of emotions going through me. I was always told, I'd never reach university standard, and here I am. I sometimes feel like crying. I'm a university student. So, to those who knocked me back, tried to put spanners in my wheels, I will walk on that stage, I will gain that graduation cap, and gown, and I, for the next 6 years, will work, and not let anything, stand in my way! I will not be pushed down, will not be told I cannot do something, I will do it! and there's no stopping me! It won't be easy, there will be storms, even earthquakes, and maybe tsunamis, but I intend to get through it all! and come out, with those letters at the end, and go on to do more qualifications, in order to get to where I want to go. I have no sight, I am epileptic, but I will work, and I am proud to be disabled...

an interesting take on things.

Epilepsy, a guide to life, or cruelty? My thoughts regarding my life only. Well all. Looking back over my blog, you will see, or may not see, that there is a pattern to the most life changing of events. all of them, seem to be following seizures. The most recent, and most strange of them all, is that people, with whom I did not get on with at college, seem to be wanting to communicate with me now. Why is this? Is it because, they genuinely want to? or because they just would like to see me fall again… I decided to think about it. Strangely, before, and after a seizure, or shall we say, the three seizures I have had, strange events seem to happen. The fact, there may have been arguments with several people, but that may have been nothing, then, the seizure itself, but here’s the key thing, after them. Suddenly, those, who did not want to understand me, or support me, or help me, are wantting too? Is this epilepsy, showing itself, when ever, I am not seeing the fact, there are people out there, wanting to support me, to guide me, to help me, and it is making me learn the hard way? That way being, having a seizure and watching them all come rushing to your aid, then wondering why they are doing so? or feeling guilty about the fact you did not treat them how they are treating you at this period in time? So, I don’t know about you, but it’s certainly left me wondering. Is my epilepsy at least, making its appearances, when it’s most needed? to make people listen to reason they may not have previously, to make me understand there are people who care, and to make me feel more empathetic to those whom I previously did not feel empathy towards. I certainly, do wonder. If we want to personalize epilepsy, then we can certainly say the following. Sometimes, in some cases, yes, she is cruel, and rips our memories to shreds for the next five days, and yes, she does scare the living daylights out of our friends, family, and bystanders, sometimes takes lives, sometimes causes problems, a lot of them, but there are those few times, at least for me, where I feel it’s almost like a guidance, Look, there are people wanting to support you, to care, why can you not see this! They are putting on the front, the stigma, but inside, they care a lot. It’s deep in their heart, but they can’t show it, so I suppose in order for them to show it to you, I’ll have to force them, by being the catalyst for these events. Hope you all enjoy this read. Of course, I’m not defending epilepsy in any way, or saying it’s a good thing at all. I still, and will always continue to help, support, and have empathy for those who want it from me. Feel free to contact me, on samanthaash1993 on twitter. I’d love to hear from you…. :)

The unthinkable happened.

Sunday morning, June 15th 2014. and I got up, feeling fine. Took my meds, as I usually did, and went to bed for another half hour or so. I got up, still feeling fine, and wanted to go outside, as it was sunny. I couldn't though, as I didn't know where my chair was, and would find it slightly difficult to turn round, into the right position, as I was going to bring my macbook pro, and iPhone outside. I decided, to go into the living room, and wait for a while. Listening to something on SkyGo, I was enjoying it, when, suddenly, everything fades, or does it? I hear nothing, just the odd, boom, boom, boom, of my heart rate, increasing, and the feeling of "something's coming but what?" then, a drop; I was on some sort of aircraft or something, and we were in turbulence. I knew nothing, nothing of the reality that was actually going on. I wasn't there, I wasn't anywhere. I was just, somewhere. silence; I was in an old memory, but not living the memory. I was not doing the things in the memory, but I was in the house in which the memory took place. I was in a room. A large room, smelling of perfume, and new carpet. The pine wood from the new wardrobes fresh to the nose. I was on a bed, or the floor, with someone. "Where was I?" I was in my cousin's room, in her house, upstairs, and she was beside me. It was her heavy, fast breathing, wasn't it? but wait; why was I then hearing the words, "She's slowly coming round now. Not with us at all." "She's not all there." What was this? Something was not right. I mustn't be there at all, so if I wasn't, where was I? had I been asleep? did someone wish to speak with me? and they weren't getting an answer? why wasn't I answering them? I felt someone rubbing my head, slowly, her breathing short, and heavy, an air of panic in the voice, which sounded different to normal. Deep, warm, but higher than normal. A woman's voice, the woman was leaning over me, observing my every move, breath, and sound. "Who is this? What is happening? Who is here? Why are they saying I'm not with it? Is that me breathing I can hear? Why can't I breathe? Why can't I speak? Where am I? What time is it? What day is it? Was I asleep?" It was almost like a sense of foreboding, "I shouldn't be here. This is not a room I know, or am used too. Where on earth am I!" All those thoughts, running through my head. At the same time, I heard, the person, who I now recognised as Nana, saying, "I'm here, I'm here, okay.. It's alright." Then, I realised, it was only her breathing, only her, in the room, and her, who had just witnessed, something really terrifying, perhaps a tonic clonic seizure. What this particular thing was however, had not registered with me, but I knew, it must have had something to do with me, and something that hadn't happened for a while at least, or if at all. I did something, I should never, ever, have done. This shows, I was still Postictal, and not quite around, yet. I tried to sit up. Immediately, I began choking. "I think she is going to be sick. Lie down, Samantha, come on." I was pushed, gently, back down, onto my side. My breathing, short, and shallow, my chest rising and falling, barely visible, I lay there, heart racing, and not able to move. I just lay there, co-operating with what ever people wanted me to do. My nan left the room, and I lay there, still, wondering, what is happening to me? Why am I just lying here. What was I doing? All this time, Nan was on the phone to the emergency services, but that had not registered with me. Finally, the siren was heard outside. Nana's voice then echoed, from upstairs, "Are you alright sweetheart? You've just had a seizure, do you understand that? You've had a seizure okay?" I just mumbled, mmm, and lay there. I then must have tried to get up, bad move. Why was I doing things, that I should never, ever do, and get angry when others, such as nursing staff, attempt to move someone after a tonic clonic seizure? Yet, I was doing the most highly dangerous of things? Why. Surely I would have known, to stay put? Not to sit up? Finally, the medics arrived. I still lay there, and heard them walk in. They asked me questions, and my responses were in a soft, and weary voice, that was barely audible. They assessed me, checking my pulse, which was very, very fast. My BP was not good either. Finally, I forced myself to my feet, feeling unsteady, and stiff, and walked out, with the help of a paramedic, to the ambulance. I almost slipped on the steps going up to it, and decided, instead of climbing up the first step, and then the second, I just stepped up both of them. I was taken to the hospital. They brought me into the bay where usually all the trauma patients would go. This, was my first experience of the bay known as the Resus bay. I could hear heart monitors beeping further down the room, and could tell it was large. I'd never been in this room before. This told me, they treated people with epilepsy, or people who had seizures, seriously.. They then hooked me up to a monitor as well, and did an ECG, electrocardiogram, to assess my heart rate.. My Nana looked at the monitor and thought, it was in the lower 120s region. I was there for about half an hour, then, discharged. When the doctor came back, from double checking the ECG results with another doctor further down the ward, who didn't particularly care about them, she returned with the verdict. I was allowed to be discharged. "No! No! I don't feel safe anymore. Can I not stay here? I am scared I'll have another! Please!" I pleaded, bursting into tears. The tears were tears of fright I suppose, of someone who did not feel secure, who was nervous of the familiar unknown, of whether there would be more seizures or not, of my reaction and mood afterwards, worried for relatives who would witness them, wanted to be in the right place, should one happen. Later, I got home, and tried to sleep, but at first, it wasn't possible. every time I kept trying to lie down, I ended up feeling nauseous. Nana ended up getting a bowl. I almost brought my milk back. That night, I went to sleep, terrified, of having another. I had not had one for 2 years, until the other day. since that day, everyone's attitude to me has changed. They all seem to be more worried about me, wary of me, every sound I make is analysed, every time I go quiet, analysed, doors left open, ears pricked for any slight difference in sound. Moods analysed, everything. I'm just praying now, that I don't have anymore.

I'm trapped in a cage!

Well all, I finally had a word with the neurologist's secretary. She is going to tell him to call me directly when he arrives back on the island next week. Another seven more days of getting up, taking this stuff, that calls itself anti-epileptic medication, and feeling rubbish, after it. Sick, depressed, anxious, upset, slurred speech, other nasty stomach side affects, which is making me lose weight. Basically what I've just eaten in the morning, and drunk, the toilet gets. Every morning, all the time. I'm stuck in this ritual. I can't do anything about it. No-matter how much I try and eat, after 12:45, in the afternoon, I can guarantee it will be gone next morning. After I sit drinking tea, feeling sick, I just burst into tears. Tears of anger, and frustration. "Look at this! Look at me! Every morning, I'm like this! Where's the happiness! Where's the lively Samantha! Where's my appetite! Where is my normal speech! Where is my general enjoyment for life! Gone, in 2 mouth fulls of water! Gone, when I take those 2 pills. When they dissolve. Everything disappears!" I listen to the birds, the traffic, the laughter and enjoyment of children, and adults making their morning commutes, the sun, streaming through the windows, the breeze blowing outside, the trees and everything rustling, outside the window! All of it, would usually be my enjoyment, usually be interesting. Not anymore! Sometimes I think, I would rather the seizures, just let me drop, I don't mind, at least I won't feel anxious, and sick, and all of what i feel now. For 2 minutes or so, I will be somewhere away from it all. I know there will be drama, in front of you all, know you will have to witness me convulsing, shaking, perhaps screaming, and thrashing around on the floor. But sometimes I think, I wouldn't mind, as long as I don't have this! I wish I didn't have to pop those pills, didn't have to mentally destroy myself for 4 or 5 hours in a day! Why! Why can't I just be normal! Just have that happiness, and everything else, even my enjoyment for my singing has dissipated. Give me it all back for goodness sake! I want my weight, my appetite, all of it! Lamotrigine has taken it from me! And trapped me in this cage, of depression, and anxiety. The bars on the outside are thick, and hard to get through, if at all. I'm trapped in there, and only released at 12:45 pm! From 09 AM, the doors are shut, and I'm trapped, in the same routine! I hate it! Release me from it, please. Let me out! I can't do this anymore! Or else, there will be a river of tears every morning, again, and again. Release me from this cage of frustration, and vanishing before peoples' eyes! Please, let me out!

No response.

It's been a week now, and my neurologist has not responded. He's been emailed twice, and still, no response. He doesn't have to wake up of a morning, not knowing how you will feel for the next 4-5 hours. Not knowing, whether a big one will hit or not. Not knowing how you will eat that day, feeling depressed, and regretting ever taking the meds in the first place. Right now, I'd rather the seizures, than the anxiety thank you. I know I will regret it, saying that, but yes, I don;t like these anxiety attacks, and the worst ones, the black days, are after that lady time. They end up, that I'm waking in the morning feeling dizzy, and sick, even before I have taken my meds. I know those will probably come round again, and I hate it! I hate them! I want off Lamotrigine before those come round! Please, reply!!! I'm stuck, and I want rescuing.

Anxiety strikes again.

Well, since I wrote this last blog post, I have been back and forth to the doctors again. I have broken my own record of how many times I have been to the GP. The 19th of May, I went again, and begged them to call my Neurologist. "Please, call them now, while I'm here! Can you ring the Walton centre?" I pleaded. she called them, and he was not available to speak too. That was typical. She got his direct email, and sent him an email. I could not deal with this anxiety and loss of appetite, due to the anxiety. Every morning, my routine, is as follows: Get up, have a morning cup of tea, take my Lamotrigine, have my milk, then end up going outside for air, having to breathe deeply, for about 4 or 5 minutes, trying to slow my racing heart down. Sometimes it doesn't ware off, until about 3 hours later. That's my day, with Lamotrigine. I went again yesterday, to the GP, and begged him, to email my Neuro again. The neuro had written back, and told me to persevere with the Lamotrigine. I can't, I can't, I can't. The GP understood this, and decided to reply to his email, telling him, I am still having anxiety attacks, and it's stopping me from eating. Now it's a case of waiting and seeing what he says. I only hope he isn't angry with me for not persevering, but I have tried, and tried, and gave it chances, and nothing has worked. It's either, switch number 4, or back to Epilim Chrono. We will see what he offers. I know one thing, I am scared to death of going on Keppra, or Leviteracetam. I know my moods, I know I fly off the handle easily, I know I have a short fuse, and Leviteracetam will magnify that. And you've guessed it, one of the side affects, is anxiety! I will keep you updated on what happens.

An adventurus weekend

Well all, here is the tale of an adventurous weekend. I was given Metaclopromide for nausea, which was a side affect of my Lamotrigine, the day before It is worth noting, that I had had nausea before this, and was noticing that it was coming around, before and after my menstrual period. I also lost a lot of weight due to this problem. Anyway, back to the main story So, I commenced the full course of Metaclopromide on Friday 16th May, the day in question, where the huge adventures begun. So, on the morning of that day, I took my Lamotrigine, followed shortly afterwards by 10Mg of Metaclopromide. Thinking that I was done for the day with the nausea, I carried on doing my usual morning routine. I was told, by my GP, I had to take these tablets 3 times a day. What events followed, are a testimony to the fact I should have consulted the leaflet online, before taking this medication. it is also worth noting, that I was very drowsy that morning too. At about 12 noon, I had my lunch. It is worth noting, that I took the first metaclopromide tablet at around 09:10 hours. It was now 3 hours later. I felt nauseous and a little anxiety crept in too, so I took another tablet, to try and curve it, stop it before it started. I maybe shouldn’t have. About an hour later, I began to feel dizzy, and my breathing became rapid. I went downstairs, and tried to drink my cup of tea, which I could not do. My aunt came into the kitchen, and I told her how I felt. "Why do I feel like this? I don't like it! Is anything going to happen to me? Am I going to have a seizure?" "No, Samantha, You'll be fine. You're not going to have a seizure... If you do, make sure it's while your aunt's in the room." My aunt is a senior health care assistant. By this time, my skin, around my face, and head, became very tight, as if I had a tight band around my head, and my head was in a vice. I could not move my eyes, raise my eyebrows, smile etc. My tongue, was apparently moving in my mouth too. My eyes were moving as well, and my face contorting, and stiffening every few seconds. By this time, my head was jerking involuntarily. Moving from side to side, to the right, and back to the centre. I was also feeling anxious and teary. I went to A&E, where the doctor saw me. They made the mistake of giving me Diazepam, to relax my muscles, even though my neck, was not stiff, but my muscles were as if they were in a vice. The jerking was becoming worse, and I wanted it to stop. "Please, make this stop! I don't like it! I can't deal with this anymore! Please, call the walton Centre! I want off this meds! I hate this! Please, stop this!" I pleaded, tears running down my face. "The only thing, I can do, is give you Diazepam, to relax the muscles. I tried the Walton Centre, and no-one is there." I cried out, in desperation, the tears becoming ever more heavier, and my face, and head spasms became worse by the minute. The jerking, by this time, was violent to the point, I felt my head, being forced to the right, and back to the centre. "It's like a tight band around my head. It's in a vice! My neck is not stiff. It's my head, and face, they're going into spasm!" I tried to make her understand, but she wouldn't listen. A little while later, as I took the diazepam, my anxiety was magnified much more than previously. I was not to feel this, until I arrived home, feeling tired, and very heavy. I wanted to sleep, and felt really weird. The rooms, and corridors, and grounds, were suspended in mid air, the wind blowing gently, swinging them back and forth. I was probably about 50 feet high, off the ground, on a platform, looking down on the scene below. I stood on this platform, feeling drowsy, and calm, for the moment. Walking, on this platform, was quite beautiful. Feeling it move, back and forth, as the breeze gently blew it. When I arrived home, I got slowly out of the car, again, onto the metaphoric platform, and moved into the house. "I am tired! I need to sleep! I will just sit here, and ly on the sofa, and sleep!" That, was not going to happen. My uncle came to check on me. "Samantha, are you okay?" Then, the mayhem broke loose. "No! No! I'm not!" I tried to explain. "How do you feel? What do you feel? Tell me. Samantha, tell me!" he replied. "I can't! I can't describe it! I feel sick! I feel weird! I don't like this!" I tried to say, in between fast breathing, shouting as if in pain, and tears. I tried to move, but he stopped me. "Samantha, this is anxiety. Slow your breathing down. Come on. Slow down. Samantha! Samantha! Listen to me. Slow your breathing down!" I tried, following him, but failed. "I can't! My heart is racing!" I exclaimed, in a terrified voice. Feeling sweat begin to flow, I continued trying to slow my breathing down, but with fruitless effort. "Samantha, listen to me. How are you feeling now? Talk to me. Talk to me. Come on." he tried again. This time, the distraction technique. "What would I do if I wanted to send a message on my phone, on facebook? Samantha, come on, tell me. You know this. I know you do. Well? What do I have to do?" he asked, over, and over, trying to make me listen, and understand what he was asking of me. Finally, after about 10 minutes of him asking, I reasoned, and answered him, but in a slurred, anxious, and scared voice. Finally, after one solid, long, and terrifying hour, I calmed, and my breathing became slower, and deeper. My vocalising, lessened, and I became quiet. I lay there, still shaking a little, but was calmer now. "This is the Diazepam taking affect Samantha. You are relaxed now. Aren't you? Yes? You are aren't you?" he asked. "Yes, I think so. I think so." I responded, in a calmer, softer, and slightly more cheerful voice. "There you go! You're laughing now! You're nearer to the girl I know. I'm going now."And with that, he was gone. My whole body felt heavy to lift, and stiff, like I would feel after a tonic clonic, that I did not have. I felt extremely tired, but sleep was impossible. Later, the anxiety returned, and continued, right into the night. My Nana kept me in with her, that night, too keep an eye on me. She was right to do so. When going to bed, the anxiety was starting to become severe once more. Breathing increasing, heart rate increasing, mouth becoming dry, as well as the vocalisation, again, I got into bed. Shaking, I lay there, trying to get comfortable. I couldn't. I began to shout again, and cry out, as if in pain. "Calm down! Slow your breathing down Samantha. It's anxiety. Calm down. Come on." my nana tried to tell me. I wouldn't listen. "I can't! I feel funny! I feel strange! I don't like this! Please, Please, make it stop!" I pleaded in desperation. After another solid hour, I eventually calmed, and went to sleep, but it was a very restless, and uneasy sleep. It is worth noting, that that night, I took my Lamotrigine at 10 pm, an hour later than normal, because I was anxious about the diazepam's affects. The next morning, I awoke, and immediately, the distress returned. I had forgotten, I had taken my Lamotrigine later than normal, and made the huge mistake of taking it at normal time, but half an hour earlier, 08:20. Things deteriorated rapidly from there. The anxiety worsened, my pulse became rapid, and I began to sweat, and look clammy. I was shouting as if in pain, and not even visitors, who came to check on me, calmed me. I was tossing and turning in bed, was unable to eat, and drink, as I felt nauseous, when ever I swallowed anything. This continued for about 2 hours, by which time, my great aunt, who was the first visitor who came to see me, advised my Nana to call an ambulance. Not even my favourite radiostation, Classic FM, calmed me either. I was moving a lot, restless, and extremely distressed. At one point, I heard a rushing sound, in my left ear, which muffled my hearing, as well as pressure in that ear too. At that moment, I worried I was going to have a seizure, and I was alone. The ambulance arrived, within 5 minutes of them being called. The paramedics came in, but did not witness me in such a distressed state as before. Perhaps knowing they were on their way calmed me slightly? But did I even understand that? Was I with it at all? I was responding, but quietly and in short sentences. My speech, I think, was slightly slurred. Probably because I had not eaten, or drunk much that morning. They checked my sas, which were normal, my BP was raised, my temperature was slightly elevated, however my pulse was very fast. I was finding it difficult to stand, and felt weak, and nervous. Was the diazepam still in my system? Had it interacted with my Lamotrigine? They decided to take me into A&E again. Off I went, missing a family function, which I wanted to attend. It was the day of all days, the eve of my 21st birthday. Typical. I arrived, and was again assessed. While in the ambulance, which I forgot to mention, they checked my BP, sats, and heart rate, as well as temperature twice, before arrival at the hospital. The ETA was about 10 minutes. After assessing me again, the usual checks, as mentioned previously, I was left in a cubicle, and had to wait for about half an hour. The doctor, who came, was the doctor, who saw me the night before. The one, who gave me the diazepam, AKA one of the Benzo class. In the end, I was put on an intravenous drip, of sodium chloride, and potassium chloride, for about 2 hours. I also had blood tests, which were normal. It is worth noting, that when I was being brought into the ambulance, the paramedics requested my medication box. As soon as they saw the metaclopromide, they were horrified. We were then told, this medication should not be given to people with epilepsy. That was how my last Saturday went.

Desperate times once more.

Well, just when I thought I had managed to stop the nausea, it struck again yesterday with full force. I was just sitting there on the sofa, as you do, listening to the Jeramy Kyle show, funnily enough, when out of nowhere, it struck. The all too familiar feeling washed over me. The dizziness, the stomach starting to turn, the small heat cage threatening, the panic, all of it. I only ate a quarter of my lunch yesterday, and i knew that wasn't good. I then discovered, a little while later, I had a rash on my face, and spots. Oh darn it! Here we go again. I thought. This needs to be stopped. I got up this morning, and before I'd even taken my Lamotrigine, the feeling struck. What on earth? I thought. Again, I can't deal with this. I don't know whether it, and the lamotrigine are connected, but it's possible. I went again, to my gp, and this time, broke down into tears. I told her everything, and that I was at breaking point. I thought I had stopped it, dealt with it, and now, it's back! I was devastated. I was given forms for blood tests, and an anti-nausea medication. I am hoping this will stop everything. Now, it's, what will the bloods show? She is also writing to my Neurologist, who will probably think, exactly what I am thinking, Not again!

Desperate times, call for desperate measures!

Three weeks earlier from the writing of this post: It was a normal morning. Looking forward to going for a walk. It was sunny, and I was happy. I went downstairs, and took my morning medication. That was fine, until about half an hour later. I'm in the kitchen, eating toast. When suddenly, a sick, dizzy feeling, and the all too familiar heat cage, along with anxiety of the fact, I was feeling nauseous, washed over me. "Oh darn it! Not this!" I thought. I didn't know why I felt like this. This, was not normal. My nan asked me what I was thinking about. I replied in a soft, anxious voice, "Nothing." although I was thinking about a lot. The toast going into my mouth, the fact I had to swallow it, the feeling of nausea, the urge to go to the bathroom, and I knew I had to eat it. I couldn't. I made some excuse. After I went to the bathroom, the nausea did not dissipate. It worsened. Starting to become vocal now, making the odd noise or 2, I was taking deep breaths, which weren't working. I didn't want my nan to hear me. I didn't want her to worry. Going downstairs, I lay on the sofa, with my head to the side, breathing heavily, and deeply. It wasn't having any affect. I was pleading out loud, for it to stop, to go away, and for help. I was alone, I was feeling horrible, I had no-one to call, to talk to, to turn to. I was alone, I had to face it. I had to deal with this, alone. So I did, and found myself shaking violently afterwards. This continued the next day, the next, and the next. I only had a two day break, the day after the first spell, and the next day after. Then, it was back. I had a week of it ahead. Mornings, breakfast, meds, water, then nausea, anxiety, hardly any food. That, was my week. Things were getting desperate. Last tuesday, things peeked, and took a turn for the worse. There was the usual routine, of nausea, and anxiety after meds, but I couldn't distract myself. I'd tried theories, like drinking 3 glasses of water with my meds, having my yoghurt straight away after my breakfast, none of the above theories worked. I was at the lowest ebb. I wasn't eating, I'd dropped from 7 stone, to a serious 6 stone, and still, dropping. Something, was wrong. This dose was too high. I knew something was not right. It came to a head, last Tuesday. I hardly ate my breakfast, nor my dinner. The nausea was to severe, and coupled with the anxiety, my throat was constricting. "I am desperate. I need help now! This is getting seriously bad. Things are going to get worse, if nothing is done. I can't put up with another week of this! I can't! I just can't!" In tears, I had made an appointment for the GP that morning, but my own GP was on leave. I tried ringing my Neurologist the day before, but as I was in the Isle of Man, I couldn't speak to him directly at the Walton Centre. I was, for now, stuck. I managed to make an appointment with a GP that Tuesday. Walking there, with a determined walk, I went in, and explained the by now, desperate situation. I tried hard, not to break down into tears in front of the GP. His thoughts, were exactly the same as mine, drop me to 50Mg twice a day, not 75MG. Since then, a weight has been lifted. I am eating more, I no longer have nausea, or anxiety. I am gaining weight. Things, are turning a corner, and I'm finally, on the mend. After a desperate few weeks, I can now, look forwards, and forward to a brighter future.