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.