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.