And yet another storm could be brewing?

Another day, another adventure.

I get out of bed, and head downstairs. As I do so, I start to feel it. The every day pounding and racing of my heart. I was told, to go to A&E, but I kept refusing. Every ECG, had not caught it, so what was the likelyhood of another catching it?

I got on with my day, and headed off to an appointment. That went well, but when I got home, it started in earnist. And, with it, came the irregularities. Collecting my stuff, I raced to the GP surgery. My plan, was, that he would catch it, and try to do something.

My plan, was stuffed, the minute I arrived. Eventually, I got a taxi to A&E. And this was the adventure, the experience, I was about to tackle, alone.

Getting assistance, from the driver, I headed to the desk, and explained my situation. After being seated, for only about a minute, I was taken to triage. Eventually, I was brought to a bay. Around me, I could hear people talking, the odd beep of my monitor, which was a sats, (blood oxygen levels) And pulse monitor. An ECG, (electrocardiogram) Tracing of my heart, was done. It showed, sinus tachycardia. (normal rythm, but fast.) Typical, we missed our chance, again! Around me, I could still hear the odd bins being closed, people talking, phones ringing, people walking down corridors. Then, the doctor arrived. He seemed, by my processing, to be a man, who was going to be thorough, but very abrupt, and a man, who lacked training, for dealing with VI, (visually impaired people) He spoke to me, and then, without telling me, walked away. Great, I thought, one of those, who do not tell me when they’re leaving me, so I’ll look like I’m talking to myself! An 84 year old lady, who had a deep, warm, and pleasant voice, spoke to me. She explained that he’d gone, before I could speak. I explained that I cannot see, and she said, she could not hear, so we were a pair. That made both of us, feel more at ease I think. She told me, that she’d fractured her shoulder. That she was 84, and had a great grand-child. We talked to each other, for a good while. I’d found a friend, at least, a temporary one. For now. The tests came thick and fast. Bloods, and chest x-rays. I made friends, with a lot of people. I felt prowd of myself. I’d begun this adventure, alone, and I’ll take the rest, as it comes. I will go with the flow.

I was actually, quite enjoying it. But, questions kept coming.

The ECGs, were not catching the height of my pulse. My pulse, when going up that high, was irregular, according to my GP. Problem was, that, typically, by the time ECGs, were begun, it had gone down, and stopped being irregular. That’s the same with anything. It’s like, your body knows it’s being monitored. It does something, then when it’s being watched, it behaves itself. But, what is going on. GP had put a question mark, and queried, possible AF. (atrial fibrillation) Which, can be caused by my medication, but the GP does not believe this to be the case. But, incidentally, something, is going on.

This adventure, was turning out to be quite good, but regarding tests, annoying! I got given a nice cup of tea. Eventually, I was allowed to go home, but not after being advised, to drink a pint of milk a day, and also to make a GP appointment.

My cardiology appointment, is in 2 weeks. Then, we’ll probably both, metaphorically speaking, put our heads together, as they say, when you’re both trying to work out the cause of something. The detective work, will commence.

Still, I was prowd. I’d done something so drastic, but had taken the advice of a GP, and gone to A&E alone! A huge step forward. And one, I will continue to do, but with other things, and if necessary, make my way there again. If need, is must.

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What was happening to me?

Well, I think the last time I updated, was while I was at university. I hope you’re all sitting comfortably, as the next story is long

I was at university. Studies, were starting to slip drastically. I was failing assignments, not handing complete work in, and skipping lectures, in order to care for my friend.

That was only a fraction, of what was happening.

I was not eating, I was losing weight, from 39kg, right down to 33. I was getting angry at people, people were not understanding me. They were not understanding me and they too, were shouting at me, and retaliating.

In the end, things got too much, and I had to drop out. After events in Cardiff, which I will not go intoo, I eventually returned home, to the island.

But things were about to get worse. The keppra, (antiepilepsy medication) was causing the weight loss, the rages, and the lack of empathy. I then learned, a month after being born, I suffered an intraventricular subapendymal haemorrhage. This occurred in my right hemisphere, where my epilepsy, also originates. After that, things on social media, took a turn for the worse. In the end, I had to seek help. What was happening to me?

Then, a month ago, I had my first tonic-clonic seizure, in quite a long time. I ended up in resus. With a heart-rate of 140bpm, which was fluctuating. Now, I’m on yet another medication switch, over to lacosamide, also known as vimpat. I’m just hoping, that now, I can get better, and eventually, return to study, all be it, with my saviours once more, the open University.

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Tough times. Can I be rescued?

Monday morning, and a tired, thin looking student, turns off her alarm, and slowly stretching, gets out of her bed. After having barely enough to eat efor a small breakfast, for her meds, she prepares her bag, for lectures. An elBraille, a statistics workbook, headphones, a dictaphone, for recording lectures, and some SD cards.

It was time to head off, and begin the day. Feeling tired, she tried to focus, struggling through the lecture, and having absence seizure, after absence. Assignments were outstanding, she hadn’t completely started them, nor focusing on them. Her friend was not well, and she was concerned for them. At the same time, more pressure was piled on her, which she could not ignore.

That weekend, she finally broke. She began having panic attacks, and more seizure activity. Brain zaps, and tingling in her head all day. Sudden noise startled her more than normal, and all she wanted to do, was cry, and sleep. She would sleep for 4 hours or more at a time, almost every day. By the time that sunday came, things had taken a bad turn. Her weight was drastically low. She was 33kg.

At 2:00 pm, guests were arriving at her flat, to help her to fill in forms. It was suddenly, without warning, decided that she go back with them. They had consulted her family, and off she went. At first, the weeks were enjoyable, but something was nagging. She missed her independence, her studies, her neuropsychological lectures, her professors. Most of all, she missed home. Finally, on the saturday, a desperate decision was made. She decided to go home. It was not as straight forward as she’d planned it in her head. She did, however, manage to get her stuff, and leave with a friend. That person, of whom I have written about, in the third person, was myself.

Now here comes the hard part. I have been hiding a lot from people. My mental health was suffering, and I did not want to show it. I have decided now, that I shall continue my studies, with the very people who rescued me from the start of my ambission to get a degree, and that is the Open University. Without them, I probably wouldn’t even be realising my mistakes now. Thank you to my friends from the OU, my family, and friends from Preston, for supporting me. Friends from my course in Preston, I want you all to know, I will stay in touch, and you will never ever be forgotten. Especially my neuroscience crew, as you were affectionately known, by me. You helped me when I needed it. Thank you so much.

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There are turbulent times at University right now, but I intend to get through them as much as I can.  As well as that, there are exams coming up, which I must revise for. My goal continues to be that I will, one day, become a neuropsychologist, helping those with brain injuries. I will never give up on that dream. No-matter how much I have challenges to face. I still have to find my feet, and to find different ways to do things. IE vent frustration. But that will come.

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warmth and support, really motivates you.

Going way back, when I was at highschool, with the troubles and being afraid to ask for help, due to the fact, I would have to always disclose why I wished to see the teachers, I have still now got the mentality of that in me, even now at university. The other day, when I spoke with one of my lecturers, she expressed her concerns. That took me back to the times, when I had to learn the hard way how I was a failure. How I had to feel the small one. How I could not vent my feelings, as if they got out, said person would get angry and cross with me. Causing me more distress, and sleepless nights, worrying about their mood the next day. It sounds wrong, but when this person used to be off ill, I would feel free, like I was set free for the day. I would hope against hope they would be off for the whole week. Sometimes, my hopes were dashed. There was never a good morning, never a how are you, just the usual, what work have you for me? Yes, I slacked off, in my teenage years, and I had potential, but was this because I was too afraid to show it? or was it just because I was a typical teenage student, slacking off? but one who knew me in my younger days, would know I respected authority, and obeyed deadlines to the letter. So why the sudden change? It came to a head in my penultimate year. GCSE maths was the next day, and already that morning, I’d received a telling off about my English work. I had not yet again, completed vital coursework. I had also failed to complete and hand in my French work, due that day, but for me, due four days prior to this, for transcription for teachers to be able to read it. What was worse, I lied about why I had not done it, for fear of their reaction. That just made matters worse. To cut a long story short, this person, calling themselves  a learning support assistant, blackmailed me, by telling me not to tell anyone about the telling off I’d been given. That 5 minutes or so, felt like 50, my eyes streaming with tears, I walked to my lesson, maths. The teacher saw my distressed state, and asked what was going on. I at first, said nothing. I was not believed. My breathing gave it away. My tears gave me away. My inability to speak cohearently, gave me away. I had no choice, but to tell them. Finally, I was set free, and this person was dismissed. The person I had to deal with, for 11 long years. Finally, gone. Now, I could concentrate, but the damage had already been done. I subsequently failed most of my GCSEs. Now for a more positive note to end this somewhat negative post. Someone comes into my life, with a warm kind voice, who sees my potential, and grabs it with both hands. They know who they are. I’m eternally grateful! For this, I thank you for your support, and believing in me. I will pass my exams, I will get that cap and gown, and will endeavor to succeed where my past let me down. It really shows, when you have someone on your side, and someone willing to listen to you. Someone there for you, a shoulder to cry on. Someone, with your interests too. It really goes a long way. Pride should never stand in your way. Never let the fact you’re too afraid to ask for help, stand in the way of your success. It is a barrier. That has to fall. It’s a wall, that must be brought down. My advice? Make sure you find the one person, or support network, that will be on your side, will be there at your call, will be a shoulder to cry onn, will motivate and encourage. Give you a chance to cry when you’re down. Lift you off the ground, when your stuck, and can’t move. They will bring you to your feet. As they have done with me. Carry you, when you’re hanging off the edge of a sheer cliff face, threatening to fall into a crevasse. Don’t let pride get in the way of success. It never mixes well. I learned this the hard way. Let people help you, and ask for help. Never leave it too late. It just brings stress and anxiety, that one does not need.

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Emotional storm.

While being at University, I’ve realised, through many different experiences, how I want my career path to pan out. Through having friends with unexplained seizure-like activity, to PNES, and then, having to switch meds, on-top of this myself, my emotions have been up and down. From happy one minute, to down, wheepy, angry with everything the next. That’s Keppra for you. When I was browsing facebook the other day, I saw a post, that reminded me of the book, Gifted Hands, by Ben Carson MD, a neurosurgeon, who battled racism, in the 1960s, to get through school, to university, and pursue a career, in neurosurgery, doing pyaneering surgery, a seperation of craniopagus twins, (twins joined at the back of the head) and also a hemispherectomy, (the removal of one hemisphere, of the brain, in cases of severe epilepsy) I read his book, and listened to the movie that was made, and immediately, was inspired. I want to help others, from coma, to recovery, through recovery, to finding their voice. To help those find their voices, who have lost it, through other neurological conditions, or to give them the best solution. Even those with autism, genetic neurological conditions, life-limiting illnesses. I want to specialise in all of it. But see people in different clinics, eventually. If I say I will help you, I keep to my word. I don’t want to be one of those doctors, who say, it’s nothing, it’s in your head, or, what you’re seeing, will disappear. I will be honest, up front, to the point, will fight for you, fight for your carers/parents, and advocate where necessary. I see someone in distress, and it’s like something tells me, You need to go over and aid them. Stop them struggling. I can’t just listen. That’s been a long standing belief of mine. I just thought I would write this, and explain how I feel. To see peoples’ stories on fb, of people struggling, with medical professionals, having seen it first hand, having my friend, being told she’s faking her seizures, by first respondors, having her not believed by neurologists, doctors, and having her have to admit defeat, and have her worry constantly, as well as her mother not understanding her, which was not her fault. Yes, I’ve been there. I faught for her diagnosis, even arguing with neurologists, and doctors, in front of them, demanding something be done, that they do scans, and I think they were shocked, that I knew so much. So yes, when I say I will help you, I mean it. It’s my passion, to help others. To fight your corner. To get you the best care you can get. To be the person who believes you, when all hope is lost, and to be that person who rescues you, from the bottomless hole of people telling you different things, and acusing you of being fake, and attention seeking. I know it’s not your fault. I know. I understand you. I feel your frustration. I feel your anger, as a carer, I feel the lack of awareness, of education, of not knowing how to deal with your own son/daughter’s unknown or believed to be fake condition. I feel the anguish, of “I don’t know what I’m dealing with.” I understand. Let me help you. Let me, when qualified, fight your corner for you, give you the information. Give you the resources to help you, your son/daughter, their team of doctors/therapists. Let me be the person you can call upon, and know, that it’s not the end, and you don’t have to admit defeat. We will win this battle, together.

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Life experience, is this the crash course for working life?

A normal day, started out with me and my friend, heading off to do our usual things, like her commuting to come in, and me, getting ready for breakfast. After a while, when we finally met, things went dramatically downhill fast. I ended up having to make my first, emergency call. Nervous, I held the phone, closely listening to my friend’s every breath, move and sound. Following instructions, I continued. All the while, feeling calm within myself, knowing it was for the best. A short while later, we arrived at hospital, where I waited with her, for about 5 hours. Finally, she was discharged. I cannot and will not mention names, nor say her diagnosis, or diagnoses, for confidentiality reasons, which you will and should understand. We arrived home, tired, and cold.

Yesterday, 16th January. Was this the ultimate test of my skills at staying calm?

The day, yet again, started out normal, as normal as it could be, anyway. We went to breakfast happily, in the driving hail, bitter wind, and sleet. From there, the day was about to take a huge turn for the worse. Something I was going to have to sit through, and deal with, while awaiting sighted help. I could only do, what I could, and that was about to be tested. After breakfast, we went home, where things took a dramatic slide. Suddenly, I was faced with cluster, after cluster of suspected, and I will say suspected, from my view only, tcs. I have epilepsy, so I was guessing upon my own experiences. Sitting there, I was talking to her, and trying to get her calm, as calm as possible. It wasn’t working. Suddenly, I heard what I did not want to hear, in my opinion, and from my ear assessment only, again, suspected airway issues. Upon exhaling, I heard very raspy breathing, and shallow inhaling. Starting to panic slightly, I tried to find something, that could get some air in. Thinking she was struggling for breath, I ran around the room, looking for something, anything. I did not want to call an ambulance again, knowing her wishes. I tried to remain calm, but my heart began to race. I could hear every sound, getting worse. What do I do, was going round my head. I started questioning my own abilities at this point. I needed help fast, but couldn’t get any. I was limited to what help I and she both wanted. I was infact, stuck. My heart racing, and breathing increasing slightly, I carried on my work, I knew I just had to focus, and remain calm. I must not panic and lose control. For her, I must remain strong, and calm. Eventually, I sourced her inhaler, and told her to put her head back, tried to get her on her side. I wanted to assess breathing more closely. Finally, I decided, I needed to do something, I perhaps shouldn’t have done, but it was a risk I had to take. I lifted her head, and told her to open her mouth. I slipped the inhaler between her teeth, and feeling her bite down, I pressed, repeating the same action. It was enough, but only for short term. It helped somewhat. Satisfied with my actions, I replaced the cap, and continued to time and monitor. Things just got worse from then on. When sighted help finally arrived, as said people were travelling to get there, I explained and briefed them on the all day situation, during which, my friend had double vision.

Was this the crash course I’d been needing to force me into my career prospects, to show me what I’ll be dealing with first-hand? It felt like it. Was this the rolerathler-coaster of emotions, I would face every day? Was this, what I’d be doing? Was this what I’d be carrying with me every day, because if so, I’m ready. I went in the ambulance again, for morral support and waited for 5 hours almost, until going home, but I did not want to leave her side. I knew I must though. It was tough, but I coped. As I say in my title, for me, as someone who is totally blind, and has epilepsy, was this my career crash-course for life? If so, have I passed with honours. It was my time where I came into my own. I felt different. I felt useful. I felt like a different person. It was like I was, someone different. But who was I? Is this my calling indeed? It’s definitely neuro for me, but why do I feel so comfortable in the role of caring, or comforting? I’ll leave you all to answer that. Yes, those two days, arguably, were not what I was expecting, but I faced them with courage, and did not lose control throughout.

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