As I’ve just been reminded that this week is mental health awareness week, I thought I’d do a little kind of mini series thing. Starting with a few bits about me, and then I might just post about other things.

When I was a child, I never had anything wrong with me, well, not medical conditions or so we thought. The only thing I had was that I’m blind. As I grew older, things started happening. When I was in school, I had a support worker who wasn’t very nice to me. I was stuck with her for 12 years. She started off nice, when I was little, but then from the age of about 8 or something like that, she changed. She started telling me off for little things, dragging me by my arms across the room etc. Lots of little things she’d pick on me for, that were trivial. It was secondary school, where things took a turn. I was isolated from everyone, as she’d make me sit alone, away from everyone else. You know how in school you pick your favourite class mate to sit by, so you can maybe exchange notes, laugh with them, sit there and get bored with something in the lesson. I couldn’t. Partly because all my equipment took up one desk, and partly because I wasn’t allowed. If I dared to answer questions in class, I was hissed at by her and told I was a know it all. If I showed my talent for music or anything like that, it was suppressed. I used to love being in the swimming pool, but that changed. One day in school, I was in a PE lesson, one of the rare chances I got to actually join in with the other children and we were in the swimming pool. The support worker got everyone else out of the pool, then got me to swim while holding onto her. I suddenly realised I couldn’t touch the floor, and that she was taking me into the deep end, on purpose. Starting to hyperventilate I tried to stop her. She continued and then tried to force me to let go of her hands. I refused. Telling me I was being silly, and shouting at me, she eventu’ally turned back. As I got older, and nearing my GCSE years, the anxiety of her moods and how I would be treated the next day started to take its tole. I’d have sleepless nights worrying about what would happen the next day. I’d sometimes come home in tears from school, but not tell my nan what was wrong. We tried to report her, but we were never listened too, until year 10, when someone came onto the scene and managed to get her dismissed. After having to coax the info of what had happened out of me. You’re probably wondering, why this long huge essay of a post? Well, I just thought I would write this to start the mental health post. Don’t suffer in silence as I did. Don’t be afraid to answer back as I was. I was too afraid to stand up to her. As a result now, I try to stand up to authority or authoritarian people as much as possible. I guess this is relivant to my assignment I’m doing just now, about autonomy and identity. That experience has changed me. Yes, I never broke any school rules when I was young. I still won’t break rules. Not rules such as the law anyway. But if I think the rule isn’t justified, I will now not be afraid to challenge it. Like I was back then. I’ll come back with another story tomorrow, but what I’m saying is, I’m not afraid to talk about my trauma. I’m not scared to go into detail. I won’t freeze. Because it wins if you do that. Get it out in the open. If not to a therapist, to a friend, or someone you can trust. Even if it means just chatting about it over a cupper or something. If something is on your mind, talk. You never know where it will lead. It may lead to a blossoming friendship. You never know. I was never one for understanding mental health before I started my psychology degree. I used to just think it was all those people who heard voices and things. And because I was taught that they were mad etc, they’d be put away somewhere. Obviously I know now that’s not the case and now society is helping people to understand more about disorders of the brain. You are not mad, you won’t be “put away.” You just have a neurological disorder that can be treated. It can be controlled. You can get help. And don’t be afraid to ask for it. Anyway, I shall go and have my lunch now, and not bor you all anymore. I’ll come back tomorrow with a mental health post. This isn’t a post about me for sympathy. It’s just to take part in the raising awareness of mental health.

I thought it’s about time I did a university update. This year has gone extremely well for me. My level2 marks are sitting in the mid to high 50s, which for me is very good. I’m developing my skills too which is good. Next year will be my penultimate year of my degree. I can’t believe all those years ago, in 2014, I was only just starting. And now, It’s coming up to the penultimate year. my dream is to become a neuropsychologist to help those with brain injuries, or who have had stroke or other issues with their brains. It’s not the neurotypical brain that fascinates me, but rather the brains that do not work properly. I find it extremely interesting. I’m hoping that I can help people to understand their brains, as well as be able to develop coping strategies to help them deal with their damage. I’d like to help their relatives and friends to understand their brain too. To help them to keep up with their coping strategies, to help others become more tolerant toward them. I wasn’t tolerant in the past, but now that I’ve learned about my own brain, as well as learned about other problems one can have, it’s helped me to gain a deeper understanding of things. I really hope eventually, I make it and can help people who are a forgotten minority.

To the trolls who are targetting me. I’m sorry you feel the way you do. I’m sorry you are so filled with hatred and anger. I’m sorry that it takes over your days and consumes you and your lives. I pity the people who have to deal with it on a daily basis. I feel sorry that you can’t move on. I feel sorry that you have not found the inner good person within yourselves. Sorry that you have not been able to move on from what has caused you so much hurt and grief. I perhaps was a part of it, but not the whole trigger. I’m sorry for my part, but I cannot apologise for anything other than that. I am sorry that you hold grudges. Sorry that you feel life is so bad right now. I’m sorry for your loneliness and depression. I really do hope that you will find some peace within yourselves. Will find the strenth to confront your feelings head-on and find the help that you so desperately need. I cannot give you that. I cannot give you the strenth either. But I can but hope and pray for you. That it will be given. Peace with you all.

Today has been a good day so far! I have been out to my acoustic shooting club. This involves the use of an air rifle, with a sight on the top, that converts the light from the target into sound. I shall post a video of this below. I am enjoying making new friends with people on facebook, even if we did get off to a bad start. I just hope eventually, people will see that I’m a lot better now. I shall post the video below of my acoustic shooting and post the photos of the targets later if I can get a photo of them. I hope everyone is well. I’m still a little bit rusty in the voice department. I still sound hoarse and have a little cough at night, however it is not anywhere near as bad as it was a few days ago! I often think to myself, how can we know for definite that it wasn’t covid? I mean, some lft tests can be false negatives. No, before anyone jumps on this, I do not want covid, but the symptoms are so similar. You just can’t tell anymore.

Today was a step forward. I have managed to fill out my asthma action plan and have managed to get a rescue pack of Prednisolone for when I’m in a future flare-up like this. It’s horrible when you hear the sounds of your nan with COPD coughing across the hall every night for the last few weeks. The cough means she’s whistling and weazing. I’ve finally managed to get her to get checked by the doctor tomorrow, so things should be on the mend for her. My voice is slowly coming back, but I’m still coughing, but not as much. I’m hoping things will get better over the next week. Thank you to everyone who has supported me, helped and advised me over the last few weeks. It means alot! I’ve never had an attack that bad since 2014.

Thursday night, after the worst asthma attack I’d had, that had started in the early hours of that morning. I’D gone to the advanced nurse practicianer on the wednesday, who just told me it was viral and to take the paracetamol etc. Now though, the GP had given me prednisolone and ordered me to call an ambulance if I struggle at night. Unfortunately, that ultimatum came. It was 1 in the morning. Yes, you usually cough at night, but this time, I couldn’t get a breath in. I waited, used my ventolin, of which I’d already been using a lot of the day before. I had no choice. I had to call them. After letting Nan know, which made me feel bad, I rang. The call handler, who had a welsh accent, was very calm and nice about it. I took my inhaler as he instructed, then waited for the crew to arrive. This call was much more different. Me and Nan had to wear masks. We had to social distance. As much as possible. What I thought were the crew arrived. It was a responder or RRV. Rapid response vehicle. After checking my Sats, which were 95% we went to hospital after all the paper work had been filled in. WE arrived and I was placed in the Covid part of the waiting room. Even though my lateral flow was negative, I was still placed in there. I was then treaged. After speaking with the doctor, I was then brought into minors, and given a nebuliser of Ibratropium and salbutamol. Unfortunately that loosened up all the mucous and sputum on my chest, which meant the nebuliser was doing its job. Although that made me struggle to breathe! I couldn’t catch my breath. There was mucous all building in my throat very every time I exhaled, it bubbled and I was coughing. By this time, I was scared. I was on my own, struggling. The door to my room was open, and I could hear people pressing the buzzer. I thought, okay, someone will come soon. They’ve pressed the button, surely that means I’ll get help! I ended up walking out of my room andmanaged to find someone. The nurse was lovely. She brought me back down into my room and calmed me down. I ended up in tears. Eventually, the doctor came back very asked me what was the matter. I told him, I couldn’t breathe properly. There was sputum but it owdn’t come up. He told me the only thing I could do was cough it up. I couldn’t. It was making me wretch. The doctor kept saying: Stop fighting. Stop stifling it. It has to come up. Listen to your body. But I couldn’t. I couldn’t. in the end, after 3 times of the doctor telling me not to fight it, I ended up being given amoxicillin. No, I didn’t ask for them. The doctor just gave me them. Eventually, at 5:15 AM I was discharged from sent home in a taxi. Yes, A taxi. I have yet to speak to the GP for a review on Tuesday, to see how things have gone! But yes, that’s the adventure I did not want to happen. I just hope I didn’t allow covid to cross our threshold!

Good afternoon all! You might ask how I am. Well, I’ve caught the dreaded cold. I’ve tested negative for covid, although I’ve not done a test today. Hopefully, it is just a cold. My nan’s not been well either, so most likely I’ve caught that. MY blood results are back and they show I have neutrophilia, a condition where too many white blood cells are produced. They have also shown I have low iron, again! They are not marked as urgent, so I suspect my high blood cell count is due to this cold. I’m sitting in the garden, in the sun. It’s a lovely day and I can hear the birds singing. I love days like that. In September, I’m going to meet my friend Lynn, which is really exciting, considering I’ve not met her before and we’ve known each other for about 8 years. I have also purchased some more wentworth jigsaws. They’re 40 pieces, which should be interesting. One is of a cottage on a hillside and the other is of a fairytale castle.

Good afternoon all. I have not posted on here in quite a while. I have had some various adventures. The first little CD I’ve properly released has happened. It is coming onto online platforms slowly. I had notification of approval last week sometime. As well as this, I have been studying and struggling. Thematic analysis is not something I understand yet. Even though I’m reading and rereading what I need too, in order to complete this assignment in 3 weeks.

Health wise, my pots has been playing up. Not so much with the tachycardia, but annoying fatigue! I’m struggling to concentrate for longer than 10 minutes, even when I’m not studying. When I’m sat with people having ordenary conversation, it’s happening as well! I sort of zone out and forget what they were talking about, or have no memory of it. I’m guessing that’s either fatigue, or absences. Probably fatigue, although I’m not aware for a few seconds of people talking, it’s like I’ve fallen asleep and woken up within seconds! Very odd indeed! I suspect though my pots is the main culpret, and that what I’m suffering from is brain fog. Not seizures.

I have had this for about 6 years maybe longer, but of course, we never knew until 2020, that it was POTS.

I’ve also been trying to hunt down a person trying to impersonate me! On twitter! Yes, they have this site in their bio, and everything to do with me, yet they have scrambled the letters in my username on twitter, just by switching 2 of the letters round. They have also posted my profile picture on there too. Trying to make people think it is me, posting nasty and strange comments on there, to other people. I can assure you, that account is not me. I’m trying to find out who is behind this, as I would like to ask them, why are you doing this? What pleasure are you getting from it? It’s not going to make you look good so you may as well give this up now. And own up to it.

At least though, I still have my close friends, who know it is not me and are trying to report it. I have also been trying to get in touch with a singer for my friend, to try and get a video message sent to them. So far, it’s not worked!

In december, as I cannot get to Lourdes this year, I’m going to Walsingham instead. I have heard great things about this place, located in the UK near Norfolk. I’m looking forward to that. What is going to be the highlight of my year though, is meeting my friend Lynn. We’ve never met yet, but have been friends online for about 7 years or so on and off, ‘because of losing touch with each other. For various reasons. I’m just hoping Covid doesn’t spoil that. So far, I have dodged covid for the last 2 and a half years, but I will not be complacent. I still test myself regularly, just to make sure I’ve not caught it and become ASymptomatic. I still would like to thank those who are reading and following my blog. The new people and the people who have mygrated from my old blog, over to this. I had to delete my old one, due to trolls who seem to have also found their way over here. With help from a friend of mine, I have managed to bar their IP addresses. Unfortunately though, some keep reappearing on new IPs. Have a good day everyone and a happy Easter. To those who celebrate!

Yesterday was a brilliant day. After breakfast I had a cup of tea and a bath then got ready to go to see Tim Peake. The show was called, Tim Peake, My journey to space. The hall was half full. It started off very loud. The vibrations came through your chest and the feeling of exhilaration was probably palpable among all of us. A huge explosion, and crackles like a firework sparkler on steroids, then we were off! Tim appeared in his space suit. , huge version of trousers but with tubes made of metal going through them lwith visors and things to keep him safe in space. I was lucky enough to step into one once, when at college. I also got the chance to go into a capsule too! I’ll never forget that. It was extremely high up, and literally shaped like a ball, but cut in half. As the door was open. Or rather, hatch. Rather like the part of the ball that ceils the ball shut, was taken off. I had to ly on my back.

Back to Tim. Off we were taken, up into space! The 4 stages of launch, included boosters being used, silence, and a slight problem with docking onto the space station once we had metaphorically arrived! It was metaphorically, Tim taking us up there with him! That’s how I felt anyway! So, we were now taken to the space station, but, if we wanted to metaphorically become astronauts, we had a lot of training to do first! Which included, a 33 back to back nose up and down flight on an air craft, formally known as the Vomit Comit! Why? Because if you made it through that without throwing up, you were lucky!

After gruelling training that took at least 2 years, we were metaphorically, ready! Tim was our commander, and we were off! So we went through the launch again, having said goodbye to everyone down on earth, which after listening to Mr Peake, seemed like miles away! On the metaphoric journey, we were now on the space station, the ISS. And we had tasks to do. But… Erm, how do you do them when floating? Ask Mr Peake! He explained that one had to hold onto the walls of the module to enable oneself to get round corners and things. I tried to imagine floating through my bedroom door half way between sitting and standing! Very very weird! The space-walk was the most interesting of his talk though. The description he gave was rather like being on the edge of a black drop into nothingness! He called an obiss. He said he felt very isolated as there was just him and his crew mate, also called Tim, out there on their own! He then described the stars, lightning strikes every second somewhere on earth. 16 sunrises and sunsets every day. Flying into the aurora borealis and the aurora australis (The northern and Southern lights) He said flying directly into them was like flying into a green fog! Sitting in my chair, I tried to imagine it. I only wish I could see just to see that beauty! People describe it like beautiful music, but it’s never, ever, going to be the same as seeing it! I only wish I could have met Mr Peake, after the talk, but sadly, it wasn’t to be! I would love to have a chat with an astronaut though, just to ask them questions like, Can you hear in Space? What do you hear in launch, in between the noise of launch and the arrival where it goes completely silent? What do you hear on reentry? What’s it like on a spacewalk? What does it feel like? Is it cold in the ISS? Or warm? Do you feel wind or anything up there even if it’s a vacuum. How do you deal with medical issues in space? What’s it like to see lightning strikes on earth from up there? What space debris can you see? What does sunset and sunrise look like in space? What’s it like to get back onto earth and what do you feel like when you have to stand up etc? How do you hear each other in space? Why are voices slightly lower in pitch? Or higher? What’s it like when things go wrong? How would you evacuate if things went wrong, because you’d be in space? What does dobking feel like?

I have a lot of questions that I would love answered. Again, thank you Major Peake for that brilliant brilliant talk! Thank you for reading your autobiography on audible, which I have now downloaded! It will be good to hear your voice reading it. Next time, please, can I meet you!

Good morning all. I had a very good day yesterday, which was spent with my mother, half sister and 2 nieces. We first went and had a coffee, me and my mother, during which I spoke to some of my friends from church, who happened to be there at the same time. That was very good, because I was able to introduce them. Later, we went to my half sister’s house, Amy, ‘where my niece, Priya was sleeping. When she woke up, I by able to explain to her that I couldn’t see. Her response? Do you need glasses? Very cute! Later, we went to a noodle bar and I bought some garlic chicken and noodles. We all went back to Amy’s house and ate them. Very nice they were too. Pictures are below. They are of me, Amy and my mother, all standing together. Thank you God for this lovely day and for allowing me and my mother, as well as sisters to get to “know one another!

As I watch all the war events unfold from afar, and see how brilliantly the Polish and others are rallying around the Ukrainian Refugees, I sit here and wish I could do more. I wish I could just come over there, take someone in my arms and give them a big hug and bring them to safety! I wish I could comfort them and help them! It’s so heartbreaking, hearing what’s going on. I really wish I could do something! For me, donating isn’t enough! Just giving things isn’t enough! I just wish I could actually help someone!

Having just been browsing my files on my computer, I came across this awesome experience I’d recorded. This is a video, taken in 2017, of me listening to the blood flow through my middle cerebral artery. This was done through a doplar machine. Enjoy the sounds you can hear. Noticing it now, I was tachy even then. Interesting.

https://drive.google.com/file/d/12VB-XThCbdvQ8ZuSZBKrzCfBO3ZEk2Qx/view?usp=drivesdk

When I awoke this morning, I saw the notification on my phone I didn’t want to see. That Russia had envaded Ukraine. It saddens me that they have done this. The reports on the television this evening were sad and scary too. You could hear the explosions in the distance, with the ominous sound of the sirens. They must be terrified right now. I really hope nothing more happens, but I very much doubt tonight will go peacefully. My prayers go out to the Ukrainian people.

It was lovely to hear my nan so happy yesterday on her birthday, when it snowed. She helped me take some photos of it, which I will include in this post, now that I know how to do it. I’M still curr’ently experiencing a pain in my back and shoulder when I breathe and I have a slight cough. Other than that, I’m okay. Looking forward to finishing off my assignments and then going to lunch club later on this week

Morning all. So something I’ve not really mentioned on here, is my acoustic shooting. You have a normal air rifle, with a sight on the top, which converts the light from the garget into sound. The nearer the target, the higher the sound. Here is my target from last week.

This morning I received the forms to fill in for the lourdes pilgrimage later this year! I’m very excited to be able to fill them in with help and hopefully will be able to go. THE first time I went was amazing! The singing, the water experience, being anointed. Were just some of the brilliant experiences I had there. I also met some very lovely people and have kept in touch with a few of them! It’s so lovely to listen to the recordings of those beautiful memories. The vast huge interior of the basilica underdhround. That echo and the organ playing from above was something I can’t explain! A joy that went through you but lifted you out of the room! Almost like one was above everyone. Listening to it. I don’t know how many times I cried while over there, but if you don’t cry in lourdes, something is wrong! Everyone seemed to cry at different times, for different reasons. Because it takes everything away from you. All the anxieties of general life. The worries about things in general, work, assignments, health for some. You can all get on as one huge family unit! A few hours before we left, me and Lyndsay my friend, went up onto the terrace. What I was unaware of however, was that a storm was brewing! I had prayed for one all week, as the heat was becoming intolerable! 40 degree heat in the day, combined with 30 degrees at night, with almost 100% humidity! ALMOST impossible to sleep. SURE enough, when I reached the terrace, a huge rumble of thunder sounded from overhead! My prayer for a thunderstorm had been answered, although, sadly it wasn’t like the spectacular deluge that followed the next day, when we were already leaving. When it rains in Lourdes, it rains! I have yet to feel that. I have yet to experience many more joyous and wonderful experiences there. Here’s hoping this year I will make it.

Afternoon all. So today has been pretty windy and it still is. Have done some more of my assignment including the huge statistics part. I had to follow some instructions, but also had to re-write the tutorial, so that people could use it with Jaws. I think that’ll be very good. For others who are blind, for learning to do this in SPSS. It’s a very huge programme that takes up a lot of processor on the computer but when it works, I suppose it’s good. I have written most of my introduction now and later I have to write all my other sections,. It’s due on 23rd, so I’m hkoping it’ll be okay. If not, there’s always the resit attempt. I’m hoping I don’t have to do that though. I’ve got a tutorial today too, so that should be good. Apart from a little fatigue most of my day has been good.

Today I have had a morning of tachycardia. Heart was racing away at 120 plus beats a minute while sitting. Afterwards, I went to start my university work, but was exhausted. I had to sleep. The problem is, when you’re tachy like that, it makes you so tired. You can’t slow the heart down yourself. People say: breathe, Calm down. That does not work! The only thing I can do is to sleep it off! If I do not sleep, I cannot focus or concentrate at all! My hands are cold and my feet. That’s part of the dysautonomia. I will now just have my cup of tea and then go and attempt my statistics work… Again! I have managed to find the drinks I had when I was at college that helped me manage my fatigue. I had them during exams. They’re called argi plus. They come in small packets, sachets and you put them in cold water and stir them. there’s some medical evidence that it helps with fatigue, but I’m not sure where that is. I shall have to order them online, but they are about £58. Worth it though. I hope people with pots see this post, as it may help you. But that’s only my experience with them. I shall drink my tea and warm my hands up. How I don’t know, as they will just cool down again very quickly. I have started my fludrocortisone now, so have to carry a steroid card. Fun times! But this is the joy of living with pots and IST. My pots is probably mild compared to the IST, but I’ve not had a 24 hour bp cuff, so I wouldn’t know. I do know it dropped a lot during my active stand. Anyway, hope everyone is well. ❤️☺️🤗

I would like to thank a magazine on the island for helping me to raise awareness of pots. I really hope this article helps a lot of people. Also they can go too: http://www.potsuk.org and http://www.dysautonomiainternational.org and read up on pots. Here is the link to my article.

https://gef.im/2022/02/12/living-with-pots/?fbclid=IwAR2uCL9pKbJB1dg5k_qcvCEmPcihBrGcJS8nUSYyTerwuZNkV5dij7wpd4c

Today has been a good day overall. I managed to do all 20 cards for my acoustic shooting. Tonight it’s blowing a gale. Today is the feast day of Our Lady of Lourdes in the catholic faith. It’s a day where we pray for the sick. Ow remember the day I got annointed when I was in Lourdes. It was a very moving experience. If one doesn’t cry in Lourdes, there’s something wrong. I hope this year, I’ll make it to Lourdes. It’s a beautiful place. A place where you can let go of all your anxieties. Hopefully everything will be fine this year.

I’m still awaiting a call from the recording studio. Should be interesting. I would like to thank people for the positive comments, regarding my latest recording of me singing somewhere from West Side story. That means a lot. As well as this, I’m waiting for confermation that I will be going to Lourdes this year. I really hope this is the case. It will be interesting, because we will have to follow the French covid restrictions. Compaired to last time, it will be interesting. Tonight I have my tutorial with a tutor who I have paid to help me with getting my assignment done and to understand the question. I hope all is well with everyone today.

Good afternoon on a cold stormy sunday afternoon. The other day, I plucked up the courage and emailed a local recording studio, to ask about the possibility of releasing a small EP of some kind. I’m leeping into the unknown as I have never done this before, but it’s time my voice got heard. You can find little clips of me singing across on my website where you will find this post, but press on the link that is called: “Singing.” A few years ago, I lost my confidence completely and stopped singing. My voice was silent. I had sung for many years, both in concerts and at home, or in competitions. Something, though, was stopping me. People mocking it, like they used to do in secondary school. I’d sung on a small album that our school had made. It had good reviews, and the song went round most peoples’ IPods, however, some people decided to mock me. They would come up and say: “Ergh! My ears are bleeding.” Would pretend to cut my hair with fake scissors. My dream back then, was of becoming a singer, and singingwith an orchestra. To this day, I still have that dream. To sing anything with an orchestra. I just hope someone from the IOMSO reads this. I so wish I could sing something with them. It would be a dream to record that. Please God make that happen!

Talking of God: It was in Lourdes, when one day, someone approached me and asked me to sing. I at first, refused saying that people would not like it, because they were younger than me and perhaps would not take to my voice. He was not letting me get out of it and eventually, I gave in. But… What to sing? I just sung the first song that came to my mind and one that the group would know. You’ll Never Walk alone! Yep, #YNWA. The Liverpool Anthem! I got ready to sing. Everyones’ ears were on me. Heart starting to speed up, but with the normal response to adrenaline, I began singing. What happened afterwards, was a total surprise. The whole room appauded and someone asked me to sing something else. O Mio Babbino Caro: Oh My beloved Father, by Puccini. Surprised, I sung the small aria and yet again, people applauded. Videos had been taken and they went round peoples’ phones like wild fire! Later, it was posted on the Lourdes Music group Twitter page. I was delighted. Could this be the beginning of my small dream of a singing career? Again? Who knows. Lourdes after all, came with miracles. That was one of them.

Now, though, this time is different. This is a professional style recording ifit goes ahead. I must prepare properly for it. Rehearse, Rehearse and rehearse, if the answer is yes! If this is worthy of submitting to radio stations etc I must practise hard. I’m praying that this goes ahead! Thank you to my lovely friend. Rachel! You are brilliant!

Good afternoon all. I thought I would type this post from my chrome book. I have learned quite a lot about typing on this machine, as well as sending emails and even studying on it.. It is actually more acccessible than I thought it would be. Typing on google docs is extremely accessible compaired to last year when I tried to type on it. I have managed to get some paragraphs down for my assignment which is good. I will then copy and paste it into a word document.

An update in general. I am particularly stressed at the moment, due to things going on with getting my care at another hospital. It’s something out of my control, due to the fact I am classed as outside the UK at this particular hospital. I think perhaps, someone has mixed things up. This is stressing me grately as I do need my care and treatment plan that was requested. I have been given a new iPhone case, which has a little purse on the other side of it, where I can place the cards and things I need in. As well as that, I will be wearing my sunu band a lot more, to detect obsticles outside. I hope everyone is well and staying safe.

Living with pots and IST is exhausting. Your heartbeat is almost constantly fast. You end up with huge bouts of fatigue because it’s racing and racing away. People don’t understand. They just think I’m lazy etc. It’s not that. It’s the fatigue and constant pounding of my heart that is causing it. The coldness is due to poor temperature control. Yet still people do not understand. I’m going to have to try and eat dinner now, knowing that my heart has just slowed down a little, but when I eat, it will speed up. This is what happens to me almost every day. It’s hard. I have to try and study, alongside the fatigue, brain fog. Coldness even though it’s not cold according to others! I hope everyone is well.

I just want to put a post up here to let people know what it feels like to finally be validated by a team of doctors. I have had doctors on and off tell me I have an eating disorder, it’s all anxiety, it’s all in my head! The common pattern for pots patients. To finally be told, yes, you have autonomic disfunction, with other potential issues triggered by it, was brilliant! Not because it was another diagnosis, but because I know now what it is! Pots, with dysautonomia. Basically, my autonomic nervous system does not function correctly at times. And at times, it tries to hit the hard reset button; and fails! Drastically! Lol! More info can be found at: http://www.dysautonomiainternational.org

After a few years of fighting and telling doctors in ED I do not like their attitude, as well as metaphorically flooring a locum cardiologist, with education on something he clearly knew nothing about, I’m finally where I wanted to be for 2 and a half years. I want to thank the team at a hospital in London, who are very very good. And in my opinion, world class! Their expertese now mean that I can try to educate others and help them too. It also means I can try to manage what I have. There will be days when I’m too tired to work properly at my studies, which means I’ll have to keep taking breaks every 10 minutes, due to constant fatigue and impared concentration. There will be times when my heart races and races away. Which will make me tired. Most likely, there will be other things, as well, but at least now, I know, it’s all part of the dysautonomia package! Not something I asked for for christmas or a birthday, but I have it anyway. I just hope my blog (well, the pots part) helps someone else out there. Where ever you may be. If you’re still getting abused and gaslighted by doctors in ED and other specialties, stand up and fight! It’s not in your head! Dysautonomia is real! Pots is real! IST is real! Brain fog is real! You’re not suffering from anxiety in that regard. At least! I mean, you may have anxiety, but that does not mean the doctors should shrug you off and blame everything on it! They are far too quick to do that nowadays. It’s wrong! So keep fighting your corner! What you have is real!

I’ve been silent on here for the last few days. I’ve now been decreasing the citalopram and getting ready to go onto ivabradine, but now my mood is swinging again! I’m down to 10mg Citalopram and I don’t think my body likes it! I don’t know whether to stay on the regime of going onto ivabradine, or trying something else! I don’t know what to do! I hate this being in unsure mode! My mood has gone downwards, but not low. I’M just snappy and I don’t like it! My heart has been racing all morning and settling only now! But I know that’s because of the IST. I’ll also have to come off verapamil to try ivabradine. I’m just not sure about things anymore! These are some of the problems with pots.

Good evening. Just an update! I have had a lovely week this past week. Apart from computer issues, where my email system was playing up. It means a lot to me that I have friends even though most are online. My best friend, Lynn is a lovely person. I have looked after her for a few days now, keeping her company on facetime. It feels so rewarding to be able to do that for someone, as well as to be able to comfort them too. Regarding my meds, I’m now on the 10mg Citalopram and after a month I will be going onto the ivabradine. To help with the tachycardia. I again, want to thank my friends and family, My mother, My nan, my godmothers, all for helping me in their own ways. And observing me while I’m switching medication. You’re all lovely people. I have said this multiple times, but I do want you all to know how much your help means to me. That you all think of you what you do. I’m hoping this week will be another good one. Hoping to play the piano at some point this week too. Still trying to keep up the positive mood and things now. Even though I know there will be ups and downs. I hope you are all well.

Good morning. I hope everyone is as well as they can be today. It’s quite cold outside, so I’m glad I’m not venturing out. Today me and nan are going to start a jigsaw that she got me for christmas. It’s by a company called Wentworth Wooden puzzles. The jigsaws are for sighted people, but for blind people it works too, as the pieces are wooden, so you can feel the shapes. I had one last year, with all the US flags in it, but I seem to have lost it: I ‘am going to sleep off my verapamil, before I try to get down to any study. As I know I will not be able to focus on anything if I don’t. I’m hoping we can do the jigsaw before epiphany.

2022 came in with a slightly quieter start, regarding fireworks, but it came in with quite a good celebration from me as I sat with my friend Lynn on facetime, with her mother, and listened to Spirit of the glenn by the royal scotts drogoon guards. I love that type of music. It’s very emotional and thought provoking! As well as that, on new years’ day, me and nan sat and listened to the Sound of music. Another favourite of mine. It’s a film you can never not cry through. I also know some of the songs from it too. If I remember, I shall record myself singing something. Yesterday my aunt came for tea and we took the decorations down. A depressing part of January, but even so. I guess it just has to be done. Later, me and nan watched Call the Midwife. Another favourite programme of mine. it was very sad, but also joyful too. There are a few spoilers coming up, so if you have not watched it yet, skip that part of this post.

A lady who was in series 10, had a baby who had a lot of issues and did not have any legs, because of radio active contamination. The joyful part was that in series 11, she had a healthy baby. It also raised awareness of still birth and how men in those days took advantage at times. Afterwards, we watched anne. A drama about the Hillsborough disaster. I cried during it and I think I will cry in tonight’s episode too. The actors and actresses played the parts very well. It shows just how hard it is to beat the system, when they try to cover things up and lie! I also found out today, that I scored 52% in my latest tutor marked assignment, which I never thought I would do well in, as they had to change the format slightly. I hope this year will be a good one all round. Happy new year to everyone.

As the year is coming to an end, I thought I would write to you all wishing you a happy new year. I’m hoping that this year for me, will be better than 2021. I’m hoping my life will get better and that I will not have any setbacks or people being nasty to me. Regarding friendships, I’m hoping I can at least, try to reach out to some with an olive branch. After all, it’s a new year and a new start. I hope everyone is safe, and has a good new year celebration tomorrow.