This blog details my journey through my singing, and also my attempt to prove those who thought I would not be able to achieve, because of my inability to see, that I can. It details my studies towards a BSC(Hons) in Psychology with counselling, and life as an OU student.
Saturday, December 6, 2014
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 :)
Saturday, November 29, 2014
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
Sunday, October 5, 2014
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...
Saturday, September 6, 2014
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….
:)
Tuesday, June 17, 2014
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.
Wednesday, June 11, 2014
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!
Thursday, June 5, 2014
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.
Wednesday, May 28, 2014
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.
Wednesday, May 21, 2014
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.
Thursday, May 15, 2014
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!
Thursday, May 8, 2014
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.
Thursday, March 20, 2014
Weaning off Tegretol.
Hi all. I am currently weaning off Tegretol and onto Lamotrigine. So far, I have increased the dose from 25Mg in the morning, and at night, to 50Mg twice a day. Monday was a bit interesting. At about 6:30, I started to feel dizzy, and sick. It interrupted my tea. I had to lie down. It then passed, and I was fine. Until 10:30 pm. Things went down hill fast. I went to bed, and felt hot. No, not a fever, just my face was bright red, which is the Tegretol's fault. Lying down, I noticed, I started to feel dizzy again, and sort of light headed, but not like you're going to faint. It's sort of unexplainable. I then felt sick again, not like I would vomit, but an unusual kind, throat and stomach churning. My breathing then started to increase, as I began to feel quite scared of how I was feeling. Not normal scared feelings either. I just felt alone, even though someone was just across the hallway from me. Even though my nan was a door away. Even though the door was open. I still felt alone, nervous, and didn't know what was going on. Why I felt sick, thirsty, dizzy, and anxious. My heart rate was normal. I kept feeling my arms, and legs, twitch every now and then, but that was normal, as they did that on Epilim and tegretol. i kept clutching onto the bed covers, as if trying to comfort myself, trying to tell myself, "yOu're okay. It's alright, it will pass, you're going to be fine. Trust me" I was slightly teary, and on both occasions. I knew, and felt everything around me, could hear normally, and was aware, I was in my room, in bed, knew the layout of the room and the house. I was not unconscious, or zoned out. It then passed, and I do remember saying to myself out loud, "I feel sick" and my voice was soft, and nervous. Very quiet, but you could hear the fear. afterwards, i went to sleep, and awoke a few hours later. Feeling shocked. "What the... was that? what just happened? What time is it?" time felt slow. Like the hours before had speeded up. The hour in which the anxiety, or what ever it was, had taken place, had speeded up. It was not normal time. It was like it was all a blur. Now time was normal, but slow. It was late, early hours of the morning perhaps. What had just happened? I will not know. I cannot judge though, whether it was the lamotrigine, or the Tegretol,, as I am not on the Lamotrigine properly. There is still Tegretol in my system. Only when, and only when, I am on the lamotrigine properly, can I then scrutinise it. Then we shall see, but right now, I feel lucky. I think I've struck gold. The experience begins tomorrow, Friday 21st march, when the morning Tegretol, is dropped. Lamotrigine goes solo. We shall then see, just how good it really is. Or if you want to be funny, just how good she really is. You could make it like a gameshow, The cube, for example, where concentration is of the utmost importance. You have to add humour to these things you know, even though they are serious. Then on Monday 24th march, Lamotrigine is increased to 75Mg at night, along with Tegretol, still. That's when things get really interesting. That's the "Here we go" moment. There will be a fight on your hands. One will be conflicting. Or, if we're going to go for the humorous approach, it's like Lamotrigine saying to Tegretol, "Move out of the way. I've come to take over your job. As you cannot do it as well as I can. At least, it seems so." so there you have it, the latest news on me. I hope you enjoy this post. :)
Saturday, March 8, 2014
Anxious memories.
I thought, I would let you all know, how it feels for me, when someone shows their direct, or indirect annoyance, or anger towards me. No matter, how gentle you are, the fact you are angry, will speak louder, than the gentleness of the voice.
Anxious memories
Samantha, can we have a word? is always the phrase I dread. The sudden opening of a door, the slam, Or the footsteps of someone’s brisk walk. Their walking becoming nearer, and nearer. Their breathing slightly louder, and faster than normal. My breathing slightly shallower, and quicker than theirs. The room becomes icey cold, the warmth gone, disappeared like a puff of smoke. Oh here we go. This is it. The blow that I was destined. Every footstep is an effort, every breath slightly harder, and can be heard, in my oversensitive ears, movement is slower and restrained, every heartbeat, growing louder, and faster. Mouth becoming dry, as we walk, leaving where ever I was, probably quietly getting on with work, or relaxing. No time for relaxing now. No time for chilling. Unless you count the chill in the air. We may, or may not, walk to an corridor, with an echo. The corridor, is vast, and wide. Every sound overhead, making me startled. My stomach tingles, and I feel my body jump slightly. I shake, as I stand, or sit, routed to the spot, waiting, waiting for the blow to hit. Then the voice, loud and strong, shouting as loud as it ever has. Probably telling me off for something random. I don’t care. All I want is out, out of there. The person leans over me, or stands close to me, firmly speaking to the echos all around. Their voice reverberating, and reverberating. Over, and over again, through the still, icey air. Afterwards, the air is still, and silent. Although the anxiety, is not. Still, the storm rages. Rough seas, crashing waves, and the gales blowing large stones, and debris onto the beaches below the white cliffs, onwhich white foam is sprayed. Still the storm rages, as i try to take in, the metaphoric beating I ‘ve received.
Thursday, February 20, 2014
Adventures of tegretol
Another day, another meal, another argument, and a battle with my body, to swallow food. My appetite has vanished, I can’t get it back
It’s gone, and no-one believes me. No-one believes me. The depression, the anziety, the aggression.
A battle to eat, a force, of strong emotions, difficulty swallowing my food. I can’t seem to swallow it; to contemplate swallowing it.
My enjoyment for food has gone;
After that row, I sit. Drinking tea, and inside, an overwhelming feeling of sadness, of depression. It’s my fault, all my fault, the loss of weight, of appetite,, aggression, all, my fault
It gains strenth, and all the while, I’m in company. I can’t break down, I can’t cry, I can’t let it out!
I leave the company, and break down. Tears flow from my eyes. Anger, and depression, at the same time. It’s annoying, overwhelming, it just comes with no warning. I’m forced to deal with it all the time, every day. what is wrong with me? Why am I like this! Who, or what, is messing with my emotions, i’m so fragile, so volitile, so aggressive, and stressed about it. I know those around me care for me, they want me to eat, to live, to do well, to grow in strenth, to gain weight. I want that too, but it’s difficult. They don’t understand, they never will understand. It’s hard for them, I know. extremely hard. Yet, I must sound, and look like I don’t care. But I do, I care so much. Then there’s the aftermath, of rows. Why should I take my meds? What would be the point? People don’t care, they wouldn’t care if I had a tonic clonic seizure, in front of them, before their very eyes. They would not care; and then there’s the odd thoughts, really odd, that make me think, that’s not me. No way, is that me. “What would happen, if my head made contact with the wall behind me, I suppose no-one would care about that either!” then, I think, Hang on, that’s not me. At all! Goodness, Pull yourself together!
I put my hand to my waist, and feel its thinness, I feel my hands move all the way round it, no figure.
I dread the weight, on the scales, dread it saying under 6 stone. Dread my nana’s worry, my worry. I know it’s the tegretol, but why is it doing this to me. Why am I a different person. Why can’t i be normal, instead of this emotionally shattered person all the time! This person, who bursts into tears, who gets angry, irritable, annoyed, for no darn reason! Why, can I not be happy, relaxed, enjoy my food, be kind to others, and not break down for no reason! i only hope, my lamotrigine, will change this persona, from who I am now, to who I was before, the happy, subjude, calm, kind, person, who enjoys her food, and has her heart in the right place..
This is what Tegretol does to me, and believe me, I can’t wait to get off the darn stuff! Lamotrigine, save me from this please!
Saturday, February 15, 2014
Another emotional journey
Another emotional journey.
I went to the Neurologist on Thursday of last week. I told him, of the tingling, and pain I get in my head. This, he said was to do with the nerve endings. I had two options, one to have occipital nerve blocks, the other, to switch medications. I chose to switch. I am being switched to Lamotrigine. this means, a load of emotions will be returning once more. How will I feel? Will I be able to manage the size of the tablets? what will happen during the switch? will I be aggressive, anxious, lose my appetite? have any nasty side affects? drowsiness? nausea? potentially more seizures? although not likely… The truth is, I am scared again. Not of the switch, but of the fact I will not be under as much control, for a while. Seizure control, I mean. I always imagine a scene, at least, when I was switching from Epilim to Tegretol, the scene, or scenes being:
It’s silent, in the dead of night. Accept for faint breathing, and cats moving around the house. The wind is blowing outside, and there’s a storm brewing. Clouds are grey and black. The sky is clear, but storm clouds are descending, over the bright starry sky. Inside, clocks and watches tick on, on and on. Nothing else can be heard… except, wait, what was that from the front bedroom, a crash overhead; Maybe one of the cats. She doesn’t move. Again, a noise; she stirs, and listens. Another crash; and a shout; oh no! The person in the back room jumps from her bed; races across the hall, and pushes on the door. It’s closed, but for a piece of paper stopping it being opened. Another crash; “oh no! I know what this is! I need to get in there!”she thinks. Heart racing, and breathing increasing, she tries again. No luck. Again, no luck. Again, for a final time, her hands push on the door.Harder, and harder, shoulders charging at the shiny painted wood. Finally, The paper gives way. She bursts in. Our scenes switch. Night. I am in bed, asleep. Only the sound of my soft, regular breathing can be heard. My watch ticks silently on, on the bedside table. My phone next to it, goes off with a notification. Perhaps a tweet, an email. Who knows. I can’t be bothered looking. Noise fades, suddenly; I can’t hear anything, can’t feel anything, my bed covers, snuggled around me, the bed, solid interior, the sound of my watch ticking. Nothing. I fall downwards; Breathing becoming fast, heart rate speeding up, arms and everything thrashing around, and my whole body shaking; I can’t control it! What’s happening! A few minutes later, I return, feeling carpet, the watch ticks on. I feel the wooden panelled doors of my cd rack, but what is it? Where am I? How did i get here? Perhaps it was a dream? a nightmare? Then I hear a voice. “samantha. You’re okay. You’re okay. Samantha, you’ll be fine.”Who is that voice? I know her. Know her very well. Think, come on! Focus, you know who she is! You know!
That’s scene 1.
Scene 2.
Daylight. An alarm goes off. Time to get up. 8:30. Slowly, I stretch, and get out of bed. I head downstairs to a multitude of noise. the tv, and other noise. My cousin has come over, for a while. I’m at the table, eating breakfast. I’m on my own in the kitchen. “Sam. Sam?” a voice, growing fainter and fainter. Our scene switches to the kitchen. A voice calls. “Nan. come here please! Come here! Please!! Please!” Footsteps downstairs, “Get out of the room. Get out! Stay out!” My view returns. A voice, Oh no. I’m on the floor. How did I get here? “Samantha, are you back?” Someone moves me. Telling me I’ll be okay. I am taken to a comfortable place.
Those scenes I imagine. I know they’re not likely. I know that, but I still have this fear, when switching medications, that they will happen. I know though, they are not likely.
Thursday, February 6, 2014
The story of my epilepsy.
The following, is a story I wrote, for a magazine at the RNC in hereford.
My name is Samantha. I came to the RNC on 30 October 2011. Not knowing what to expect, I was thrown in at the deep end, into a hall of residence, with no-one I knew, and having to do everything on my own. Through this, I made enemies, and had many arguments. When I was born, the only disability I had, was my blindness. That however, was about to change. Something was going to change my life for ever. Something was going to make me learn, to find my feet, to realise everyone is there for you, in times of need. To realise there are people out there who will help you. Even if they disagree with your opinions and views, even if you had an argument with them, just a few minutes before. Also it would bring me closer to people, in a way I had never experienced.
One month later; 30 November 2011. 09:10 am. 10 minutes until disaster. There I was, a normal mathematics lesson. I was doing my work. Suddenly, after a few jokes between a student and me, an argument broke out. It started to get heated. Another student told us to calm it down. The maths teacher wasn’t in the room at the time of the event.
09:15 am. Silence, and then… it happens. A tonic clonic seizure. A full blown convulsion. I groaned, and fell to the floor. One of the students called my name. No response. Help arrived from the next room. The other mathematics teacher supported me, once the seizure had subsided. They both put me into the recovery position. More information can be found about this on the Epilepsy Society website, or via their app Epilepsy toolkit. Also, Epilepsy Action’s website as well, and young Epilepsy.
All this was recorded on my dictaphone. I was unaware of this however. I was in a deep sleep. I knew nothing of time, of what was going on around me, of who was there. I knew nothing. Just silence. Silence. I was warm, calm, serene, i was in peace. New nothing of the horror I was experiencing, the convulsions, the thrashing around, the shaking violently, the irregular breathing, and all my muscles contracting and relaxing, as fast as they could. I knew nothing. Where ever I was, I was in a deep sleep, unaware of the crowd gathering in the classroom, unaware, the groan was heard 2 corridors away. My responses to them, when still postictal, was unpredictable. It was almost like one minute I understood and responded, with mm, or MHM. My responses would be varied and far between. My breathing deep, sharp, and heavy. Short, irregular breaths, that were laboured, and not in a regular pattern. I could not communicate, could not obey instructions, could not form words or phrases. This period, is known as the "Postictal" period, the period in which the brain is recovering from the seizure, to becoming normal again. This can last from minutes to hours.
Later, I suddenly came round, to hear a voice, telling me they were checking my blood pressure. I remembered the monitor from the day before. Vaguely, I could recognise just about who it was. It was the nurse. Why was I in jeans? What time was it? Where was I? All this was swirling round my head. My brain felt empty. No awareness of time. It was frozen. I was in a mid-time zone somewhere. Was it 7 AM? Had I even got up that morning? Wait, is it morning? What day is it? What time is it? where am I? and who, is that? What's that sticky substance on my wrist? why have I got a huge gash in my tongue, that feels like a hole? Is that blood on my hand? It's bleeding. what have I done? I couldn’t process words, or questions. What made you keel over? What do you mean? What made you have a faint? I don't think I fainted. Did someone upset you? I don't think so, I don't know. What did you have for breakfast? I can't... I... You can't remember... No! What serial do you like? Toast. I couldn’t remember much. Not even of the morning before the seizure. I’d forgotten I had been given my breakfast by the wardens. Forgotten I was in lectures. What I'd done to my hand, was that I'd bitten it, as I went down. I clamped, and literally bitten into it. There were tooth marks in my hand.
I was not to know, until I arrived home it was a seizure. The nurses just thought I had fainted at the time, as I was still when they arrived.
My uncle heard the recording of the seizure. His words were, “That’s a fit.” They echoed like an explosion round my brain. What? Me? I was silent. No! Me, have a seizure. No! How can that be? I thought. I didn’t know exactly what they were, but I knew enough to know, something was seriously wrong. It was not normal. What had happened to me.
Four months later. March 25th 2012.
An unusually warm summers day. Everyone’s chilling outside. It’s time for lunch. For some reason, I was very happy that morning. It was almost like a sense of euphoria, as if I’d just done something extremely good, and maybe won an award for it. As if, I was as happy as I would ever be, and nothing could change that, knock my emotions. It was like I was, metaphorically, on top of the world. I could do anything I endeavoured to do, achieve anything. I just felt great. Joyfully, I told Nana on Skype I was heading for lunch. Little did I know, that day was about to change not just my life, but a few other peoples’.
13:00. I’m in the refectory; Lunch is on the table; Suddenly, noise fades; I hear nothing; there’s a huge crash. the table, chairs, the jugs of water, bowls of food, cups of hot chocolate, and glasses, as well as vases of flowers, were pulled over with the force of my fall. As I went down, I hit my head on the hard floor. My skin went a purple colour. Apparently, as I was about to fall, I gasped, before crashing to the floor, with my full weight. Onlookers race to my aid. “Pull the table back!”was said. Students moved the table back. Staff raced to my aid to comfort me as best they could. An ambulance was called. Medics rushed in; A heart monitor was clipped to my wrist; As soon as it registered, it began fluctuating; From normal, to slower, then speeded up, and went back to normal again, before it was taken from my wrist. Onlookers gasped in horror; before being told, by a sighted onlooker, that they had removed it from me. There was nothing to worry about. Of course, there was a lot to worry about. This was my second seizure. Something, was definitely wrong. I knew nothing. I was blissfully unaware, that there was a drama unfolding, right before my eyes. I caused this drama. I was unaware, there were medics with me, unaware, of people still eating, and not taking any notice, of the drama in front of them. Blissfully unaware, I was being moved, and of the pain I would experience later on. It was silent where I was, so peaceful, quiet. No-one was around, nothing was around me. I was warm, calm, where ever I was, knew nothing, and felt nothing. Knew nothing of the dramatic events, that had just occurred. Nothing, of the thunderstorm, unfolding in my brain. I was strapped to a stretcher; People were calling my name. No response; just confused mumbles from me. “What do you want to be called? Sam, or Samantha?”I was apparently asked. Sternly, I replied “Samantha!” I never knew I was aggressive towards those poor medics, until later on. I felt bad for that. They had done nothing to me, said nothing untoward, why was I that nasty to them. Again, it was a tonic clonic seizure. This time, much worse. Much worse than its cousin; Noise fades into view; I’m in some kind of vehicle, I’m in some kind of seat. It’s a large vehicle, but I’m not sure what it is, or where I am. Where am I? What is this vehicle? Where is this vehicle taking me? Have I been here all the time? Is it night time? Is it Day time? Noise fades out once more. A few minutes later, comes back into focus. I’m going over bumps in the road. i hear voices, people talking, a male, and female. I tried to move, but couldn’t. Why can’t I move? What’s stopping me? Is it a belt of some kind? I'm strapped into a seat, but hang on, where's the seat belt? I can't find the clips. Hands feeling around, I tried to find the imaginary clip. Where am I going? What time is it? What time of day? And, what day is it? It fades once more. Suddenly, we’re back. I’m being wheeled into hospital. I knew some of this, but only just began to realise. I’m being wheeled somewhere. I guess I’m in hospital. Why though I don’t know. I couldn’t tell you. The voice, then filled me in; “you’ve had a seizure. We’re bringing you to a cubicle.” What? I exclaimed. Suddenly coming to some kind of sense. Why? When? Where? How? What time? Who was there? “A few minutes ago.”said another voice. Who is that voice? Who is it? I know it, I think. I can’t remember the name. “Samantha…”then she said her name. “I came with you, you’re in the hospital. You had an epileptic seizure. Do you know who it is? You were in the refectory.” No, I don’t know who it is, wait, hang on, why did you come with me? Why are you here? What’s going on? A seizure? Aren't they serious? Don't I have to stay in over night? They're serious! Seizures, are serious! I tried to sit up, stiffness all over. Then, the pulse, a pulsing, throbbing pain. I put my hand to my head. How did I get that? This egg shaped bruise on my forehead. “You fell, Samantha, and hit your head. You were also sick.” Oh goodness. I thought. Why? Why did that happen? “We had to clean your ID card.” Oh no! This gets even worse. I was sick on my ID? Defacing my card? Now what will happen. I’ll be in trouble I’m sure. Then I remembered, it’s sunny outside, I think it’s Sunday afternoon. My memory was slowly, returning. After a few blood tests, I was discharged. How I managed to inform them of my Nan's phone number, to tell her, all the way back in the Isle of Man, all those miles away, I will never know.
Again, I found out, the hard way, people from all walks of life have seizures, including me, they strike like lightning. Also that people will come to your aid, do the best they can to help you. It may not sometimes be a lot, but they do their best.
Later on, confused, tired and with a bump on my head, I arrived back from the hospital. When I went home to the Isle of Man, I was put on Epilim Chrono. An anti-epilepsy medication. It does not stop the seizures, but controls them. It is NOT a cure. I still have side effects. Tremors in my arms. Every day, constant vibrations. As I’m typing right now, my arms are shaking.
I had to have an EEG, (Electroencephalogram) which scans the electrical impulses in the brain, and checks the brainwave patterns. A normal person would have different patterns to one with epilepsy.
Later I had a CT scan. Both concluded the one diagnosis I was expecting, and knew all along, epilepsy. I knew it would most likely be for life. My philossiphy is that you will never be free. Even if you are cleared after a few years, they are random and strike any time, any where, and sometimes, without warning. For those however, that think there is no llife for you, there is. Unfortunately, we were given this card, we were dealt it, so we must play it off. It’s life long, but we won’t let it beat us. We can do so much in life, let’s live it. If we have seizures, we will, if there’s a stigma, there is, people will gradually become more aware. I understand your anger, your agression, sometimes being accused of dwelling on your condition. We are right to be concerned. However, there is a life! There is work! There is enjoyment and there is pleasure! Enjoy it! Live life to the full!
We’ll be okay. All of us will. You just think positively. I used to avoid people when they told me they had epilepsy, I will openly admit… Now though, ever since my two, I have become very close to those with it, and want to do everything in my power to help, to understand, and to calm them when they need it. To understand peoples’ frustration, to educate, and make people aware. Just because we have epilepsy, does not mean we are not independant, we can do things for ourselves. YOu can trust us. We’re the same as you all. Just one thing that is different. The electrical activity in our brains. That’s all. If you don’t like it, please don’t mock it. If you find us hard work, tell us. We won’t be offended. How can we improve your comfort. If you feel uncomfortable, tell us how exactly. What is it? If we don’t know, we never will.
In this post, I mentioned that I was on Epilim Chrono. I have
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