I have just had it, the nightmare! - Epilepsy Action

Epilepsy Action

2,192 members735 posts

I have just had it, the nightmare!

Adlon57
Adlon57

At 4.10 am I had the final warning, I admit I need to go a care home NOW! It was a dream so real but explains so much, a flashback! I have had epilepsy for 50 years, maybe it was because of these rugby players and their signs of early dementia, I was diagnosed with early dementia in 2017, I have had over 400 seizures but it explains so many things! This pandemic has accelerated my symptoms, forgetting things, my tremors in my hands, mood changes, [the angry emails, for which I apologise!], my lethargy, lack of sleep [taking hours to get to sleep], even long sleep feeling terrible when waking, no incentive, nobody to talk too, complete boredom! I am a retired genealogist/historical researcher, I cannot now count up to one hundred, I cannot read a book, blanks, complete interest, dropping things, but I could not care if I do! Then if my hands shake too much, I think seriously, shall I bash it with a hammer or cut it off because it does not work properly, no use to anybody! I am a loner always have been, living on my own, in my own house for 17 years, if I am sent to a home then someone will be with a condescending tone "Oh look who has been a silly boy!", 'I would rip their throat out', I have a high IQ, I will not be treated like that! If I am to be sent to a home, I will NOT be there for very long! My cadaver is fragile, broken up after many colourful medical episodes, another seizure, might well be my last! This condition is slow, I have been ignoring it for so long, inwardly known, I knew something like this would happen, the pandemic is hopefully nearing its end, I hoped I might be able to get to that freedom day, I'm 64 and registered early disabled, surely not too long, I might be able to improve? My last plead for some sort of sanity? Eleven years writing a book, a major work, surely, almost finished, but seemingly no?

6 Replies

Apologies if I sound dumb, I’m 28yrs old and I’ve just been diagnosed with epilepsy in August this year. I think my past couple of seizures have been brought on due to the stress at these unprecedented times. After reading your comment regarding care homes you’ve only pointed out the negative side, whereas you may really benefit from getting a bit more support and also potentially making a new friend/s. Plus you may get to focus on finishing the end of your book even with all the other barriers you have, and I’m pretty sure the staff will soon be aware of your intelligence, as I already am just from reading your message.

Adlon57
Adlon57 in reply to Teri2020

Teri2020 I refer to any care in general, I am a independent so and so whom has been fighting bad health especially epilepsy all my life [I am 64]. That dream I had brought it home to me that I will need some sort of help and care, the stress of these recent times has accelerated my early dementia condition which was diagnosed three years ago. I will need to move to some sort of help or care now as my bodily, mental and physical resistance are very low, nothing to do with Care homes in particular. I have always been a loner I hate what I have become, I like my own company [I have been talking to myself for decades] THAT is what I shall miss, but I have known inwardly it will happen, to have support from any Carer's I will dislike, I shall be a grumpy old f##ker and I will mentally fight tooth and nail against it! I have no real friends now outlived most of them? The book is so nearly finished now, I need hopefully one visit to my public record office to stamp it's end, unfortunately closed because of this pandemic? Recently found that because of my colourful allergic resistance to morphine, I will have to wait a bit longer for a vaccine, probably explains why my vaccine volunteership never came to fruition? Like yourself stress is my main cause to bring on those seizures, fifty years of doing so!Stay safe

Teri2020
Teri2020 in reply to Adlon57

To be fair, I’m not one to ask for help. This was something that I really struggled with after having seizures. I was incapable physically, mentally, emotionally you know the whole works. I had other people running around after me asking if I needed anything which bugged me more than anything else as I wanted to do things myself but unfortunately I wasn’t in the position to be able to. I don’t know what to expect when speaking to someone with early dementia but you sound to me like your brain is still holding a lot of sense (probably more sense than I have in mine). So you must have been doing something right, even if you are a grumpy old fooker. Wow the fact that you’ve written a book is inspirational, although I don’t know what it’s about? Life has been hard and you could say sh1t at times for you in terms of your health, but not many people would have accomplished what you have. Remember that and I want to know when I can get hold of a copy of your book, just hope it’s in easy read and I don’t have to google the definition of every other word 😂

Adlon57
Adlon57 in reply to Teri2020

Cheers Teri2020 I left school when I was sixteen, I was to be put in a 'Mental Home' not much was known about epilepsy in 1973, but my parents said no, part time work etc, and here I am. I looked ok, people could not understand, that's where I became independent, I formed my own world, my own standards, my own goals. I knew I was intelligent my IQ somewhere in the 140's, hard to measure because of the various medications stuffed through my system, good times, bad times. A qualified chef, top of the course, because I knew that I wanted to live on my own, to survive on my own, not because I wanted to be a professional chef, which realistically I could never do, with epilepsy! I have a degree in history, my first love, if I had good health, I would have either been Inspector Morse or a University Professor in History? My true crime book called "Bodies for Sale??" about two infamous Irish serial murderers, has taken eleven years to complete! Plenty of black humour in it!It is the effects of the 400+ seizures that have caught up with me, my body shattered physically and mentally, every rib in my body broken, my skull fractured at least three times, that dream , to show like a white towel at the end of a fight!

🥴

Teri2020
Teri2020 in reply to Adlon57

Was you born after the whole lobotomy that Freeman performed? I’m glad your parents decided against the mental home as they knew more than anyone else how capable you actually was even without the understanding of epilepsy. Considering the situation you clearly had a lot of self belief and determination, especially back in the 1970’s. I’ve actually got it quite easy in comparison to what you’ve had to face with today’s technology and society being more excepting to other people’s differences. Honestly I’m terrible at cooking, and even worse at history but I can’t blame the seizures for that, I just haven’t got the patience or the brain capacity. Although saying that I’ve just started a degree myself in September studying Psychology. It’s going really well, considering it’s all done over zoom using the laptop. I’m just glad I’m doing something that I’ve always wanted to do and gain further knowledge and a better understanding of why people behave the way we do. The book Bodies for Sale sounds very interesting, although I’m a bit of a poo bag, so hope it’s not too scary. I don’t think Adlon57 is anywhere near close to throwing the towel in, after all the obstacles you’ve faced. It will take a lot more to get you down and keep you down 🥊

Adlon57
Adlon57 in reply to Teri2020

Thanks!👍👍

You may also like...