We are blind, but we can save lives.

There have been many blind or visually impaired medical professionals, and first-aiders, throughout the US, but the UK are still backward in their ways. A few people, those interested in the care profession, like myself, can change this.

Defibs, and many other monitoring devices, talk, or connect to a smartphone, so one can use voiceover.

Enjoy.

https://you.38degrees.org.uk/petitions/we-are-blind-but-we-can-save-lives

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The adventure continues

It’s been a few months, since I’ve had the loop recorder inserted. I have been off all heart meds. The cardiologist, at first, did not catch anything, as the threshold was too high. That is, the amount of bpm, (beats per minute) it has to be, before the loop will record. It was 180, but they’ve adjusted it, to 150. However, it did catch a reading of 188 bpm. I was not aware it was that high at times. I was sitting, doing normal things, when I received an email, stating, that I will be referred to liverpool, as it may be possible, to have an ablation. This is a procedure, where thin tubes, catheters are inserted, via a vein in your wrist, or groin. They are then gently transferred to the heart. On the ends of the tubes, are little electrodes. They will be used, to find the part, or parts, of the heart, that may need ablating. This is done, via lazers. Depending on where the ablation is done, it may mean, that you will be pacemaker dependant. We shall see if I need an ablation. This is a little scary, but, if it has to be done, then, it shall be. The words, the cardiologist said, were, that this suggested, there was a significant electrical fault, with my heartbeat. Those words echoed around my head. Significant electrical fault with heartbeat. Time froze. I was detached from everyone else. They were doing ordinary things. Yet, here I was. In the middle, frozen in time. Frozen in space. Ablation, also was echoing. So here I was, facing an uncertain few months. Meeting new people, and dealing, yet again, with the same cycle. But this time, I was listened too. This time, they paid attention. We now know, fully, with proof, that this is not anxiety. Something is going on, but where? Why? What can or can’t be done? Will it work? How will I feel afterwards? What happens now? Questions, and more questions, but this time, answers. Thank you to my cardiologist, and gp, for actually listening. Helping me. Trying their best. We knew all along, that something was wrong, but what it was, we were yet to find. We are still yet to find it. The detective mystery deepens still. We’ve got past the main enquiries. We’ve got past the witness statement stage. We are now gathering evidence. And now, the investigation, deepens still. We go further on the trail. Into tunnels, passages all branching off. But which way do we turn? Right, left, straight on? What are the consequences, of whatever way we turn. And which ever way we turn, we will encounter more passages. More forks in the ground. But we just keep on traveling, until, we reach the centre.

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A possible heart condition?

well, i can’t remember how long ago my last post was, so, get ready for a reasonably long story.

Since april, i have had a lot of things happening to me. I have left university, due to health issues, and switched meds, and had a few seizures in 1 sitting. I have also changed, for the better, I hope. Thanks to the help of my best friends. They know who they are. But since then, another concern, has emerged. I have had to go to ED 4 times, as my heart has been racing, and at times, irregular, and they do not know why. It took for me to keep going to ED, before the GPs would put me on meds. the first cardiologist did nothing, except monitors, that monitored your heart, from the outside. I was not happy, so seeked a second opinion. I blacked out, before I had my appointment with him. And ended up in ED, on the day of my appointment, setting off their alarms, because I was so tachycardic. So, now, I’m having a loop recorder, a little device, that is inserted under the skin, inserted, which will monitor my heart long-term. I’m a little nervous, as I will be meeting people for the first time, and also be under local anaesthetic, which will be interesting, as I’ve not had any surgical procedures, since before my epilepsy diagnosis in 2012. I am a little nervous, because of the fact I’m not allowed any fluids, or anything to eat, so am thinking about how I will take my meds. I am sure, though, that it will go very well. Finally, they will try to catch the possible Atrial flutter, and possible atrial fibrillation. It’s tiring, trying to do things, when your heart is in almost constant tachycardia, with the odd jumps down to bradycardia, as well. And ontop of that, your asthma, and half developed lungs. Well, never mind. It’s just life, and you have to go with the flow, as they say. But, I will say this. Watch this space, as some answers to certain questions, about how a blind person plays Grand Theft Auto, will be coming soon. And many other things. So, think of your questions. And I will think of the answers. Feel free to contact me, on the blog, or via my facebook page, or any other means, should you have them.

Thank you for following my journey. ☺️☺️

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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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turbulence

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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