Raining_again Posted February 20, 2014 Posted February 20, 2014 I'm no longer a terminator sadly.. was at physio and could barely do the rehab (that I'm doing for my hip) without being completely exhausted.. and it was less than what I used to do for a warm up!
jayseven Posted February 20, 2014 Posted February 20, 2014 Basically; had an ENT and Eye Hospital appointment today. Eye hospital appointment bizarrely changed from 10:30am to 9:30am. ENT was 8:45am. Bus was late, got to the ENT at 9am. Sitting there for 5 mins (ENT is ear, nose and throat for those who don't know - and I was there for ear stuff) and an old lady gets wheeled in. I say to her (lying) that I've been waiitng 20 mins. She asks me to speak up - so 9:05am I say quite loudly that I've been waiting 20 mins and I have NO TIME until I need to get to the eye hospital -- a door whips open and a doctor calls me into her room. She knows, as I do, that I've not been waiting 20 mins, however she then says "sorry I thought your appointment was 9am" --- so already she admits she's kept me waiting for 5 mins longer than I should have been even if she was right. if I had turned up on time then I really would've been left waiting, and then some. The good news is she gave me replacement hearing aids immediately, which means I can now hear better than I have been able to for over 7 months. Which is indeed great news. I get out and run over to the eye hospital. I clock in at 9:25am, and so I sit there for 25 mins, as always the youngest person there but half, and eventually get seen and get through a typical sight test, get a round of eye drops, then told to wait some more. I then get sent to do a field vision test, then get some more drops, get a RMLI (I dunno) scan, more waits and at 11am I get seen by my doc. He doesn't say much but agrees that my vision has decreased massively in the 10 years since we last met up. he refuses to give me a timeframe for prognosis, but refers me to moorfields (best eye hospital in the uk if not eu/world), to get "genetically catalogued". Turns out my eye shit is now considered "retinal dystrophy". There's a 'family' of conditions which fall under this umbrella. Previously I was told that my dad's condition (stargardt disease) was unrelated, as our conditions affected different parts of the retina. Now, in teh last 10 years, they believe they are linked. This means that when they previously told me that it wasn't genetic, they were wrong. SO essentially i've spent the day drinking a lot of cider (even for me) to cope with this. I am probably going to be fully blind within 20 years, and I have no idea what to do. Why bother with any job? What the fuck can I do in 20 years time? I've exchanged messages and will meet my dad on saturday. He's the best person to speak to -he's gone through similar shit. But the difference is he's not deaf as well. And he wasn't brought up by a single parent. I feel so broken, and the hand I was dealt was so fucking shit. I must've been a right cunt in a previous life. I have no drive to do well today. I am thinking about all of the people I know and playing "who has the worst life?" in my head and coming up trumps. Just... A bad day. Really bad. Fuck, man. This post doesn't express it. Life is fucking hard for me and I get ZERO recognition, and I have no idea what to say. I try so hard and linkin park, right? Got more cider.
MoogleViper Posted February 20, 2014 Posted February 20, 2014 I am probably going to be fully blind within 20 years, and I have no idea what to do. Why bother with any job? What the fuck can I do in 20 years time? Obviously I have no idea what you're going through, but this bit stood out to me. Surely if you don't think you can hold down a job in 20 years, why not work now while you can? Earn some money, and you'll always have that part of your life. Clearly there are other schools of thought, but I thought I'd throw that out there. Sorry to hear about it all though, wish I had something better to say.
jayseven Posted February 20, 2014 Posted February 20, 2014 No, dude, that;s cool. I can earn now and save... but for what? One avenue is where I am basically fully gimped and reliant on social services. They can provide a home and food, et cetera. If I save up all that happens is I am not entitled to the 'benefits' for a longer period of time. The best use of money, in my opinion, is to spend it while I have it and potentially see things while I can. I mean sure that doesn't mean I'm not burning money on cider and smokes but the point remains. And honestly I can't imagine not killing myself if shit was unlivable, so why save? Basically I'll 'retire' when I'm blind. I'll get a guide dog and spend my days pottering around, being patronised and misunderstood. There is a plus side. There has been some developments in treating retinal dystrophy in the last few months. However it's only effective in the early stages... but in the last 10 years the eye hospital has had a surge in equipment, technology wise, so I'm not giving up hope. Continued investigation into gene therapy and stem cell reasearch = good news. My referral means I'll also be put on a register and potentially invited to future trials, so it's not all bad news. I'm almost certain that if it was 2114 then this would be a routine surgery away from a solution.
MoogleViper Posted February 20, 2014 Posted February 20, 2014 There has been some developments in treating retinal dystrophy in the last few months. ...in the last few months... and we're talking about in 20 years time. Just take a look at the current research in genetic engineering. I'd be highly surprised if, in 20 years, there wasn't some treatment to give sight back (assuming they haven't prevented the degeneration by then). Sure it probably won't be perfect vision by then, but there will be something. And then in another 5 years it will be even better. They've already made glow in the dark cats, if that's not the pinnacle of human achievement then I don't know what is. Source
martinist Posted February 20, 2014 Posted February 20, 2014 A gay guy gave me his phone number. Not entirely sure what to do with it >_>
Magnus Posted February 20, 2014 Posted February 20, 2014 I think you posted in the wrong thread, Martinist.
jayseven Posted February 20, 2014 Posted February 20, 2014 ...in the last few months... and we're talking about in 20 years time. Just take a look at the current research in genetic engineering. I'd be highly surprised if, in 20 years, there wasn't some treatment to give sight back (assuming they haven't prevented the degeneration by then). Sure it probably won't be perfect vision by then, but there will be something. And then in another 5 years it will be even better. They've already made glow in the dark cats, if that's not the pinnacle of human achievement then I don't know what is. Source lols :P The results from the last few months = the outcome of years of studies. It is positive because they've trialed it on humans. If, in 20 years, they do develop the tech to 'cure' then it'll be in its infancy, and used mostly to treat minors. I've had hearing aids since I was 3 years old and the moment I turned 18 they just stopped giving a shit. On the one hand I get that - if there is anyone in my position but younger than me then FUCK YEAH sort them out first... But Moogle.. thank you :P I owe you some ciders. You prefer the fruity shit right? So GAYmers, yeah?
MoogleViper Posted February 20, 2014 Posted February 20, 2014 But Moogle.. thank you :P I owe you some ciders. You prefer the fruity shit right? So GAYmers, yeah? Next meat, we're going on a cider binge. Like most weeks, but we'll be together.
Zechs Merquise Posted February 21, 2014 Posted February 21, 2014 SO essentially i've spent the day drinking a lot of cider (even for me) to cope with this. I am probably going to be fully blind within 20 years, and I have no idea what to do. Why bother with any job? What the fuck can I do in 20 years time? And honestly I can't imagine not killing myself if shit was unlivable, so why save? Basically I'll 'retire' when I'm blind. I'll get a guide dog and spend my days pottering around, being patronised and misunderstood. I can totally understand why things like suicide would be going through your mind right now. However, there are other things to consider... There are an awful lot of negatives in the things you've talked of, and they are genuinely awful, there is no escaping that. However you have been given a timeline - 20 years. My perspective is that humans in general spend vast amounts of time procrastinating, putting off today what can be done tomorrow and generally not doing the fun things or taking the chances they should - instead sitting around doing meaningless things and essentially wasting good time. If someone gave me a timeline for disaster - for example stating that I would only live another 5 months, I would fill every minute of that with things I wanted to do. However most people don't get that, instead they live day to day thinking there's all the time in the world, that is what leads to many people never doing the things they want as they believe those things can be done tomorrow, but what if tomorrow never comes? I could get knocked over by a car today and as I lay there dying I would probably think - 'Shit, shouldn't have done that overtime recently; probably would have been better to take that holiday; would have been better to make time to see that person; shouldn't have put off that important night out...' etc. You have been given a timeline for disaster, which is an awful thing and must weigh greatly on your mind. However at least you know what time you have left with your sight and can plan. If I was you, I wouldn't kill myself. However the other bit about working, I'd definitely do less of that. I would make a list of all the things you want to see and do and start doing them. Don't sit drowning your sorrows with cider, sit and plan. Fill the time you have left with your sight with truly positive things that you feel you must do. So if and when it is gone, you have as few regrets as possible and you can say you have had a life well lived!
nightwolf Posted February 21, 2014 Posted February 21, 2014 Damn @jayseven. Obviously there's nothing I can say here and I'm sorry you have to deal with all this, you have always been the wiser one! But I'll beat the absolute snot out of you if you try to waste 20 years.
gaggle64 Posted February 21, 2014 Posted February 21, 2014 Awk, I am so sorry to hear about all that @jayseven & @Raining_again. I hope things seem brighter for you both soon. Maybe you should engage each other's strengths form up into some kind of unstoppable Megazord-type construction?
bob Posted February 21, 2014 Posted February 21, 2014 @jayseven have you seen the recent articles about the new Google smartphone and how they will be able to use it to help blind people in the future? Think of what we'll have invented technologically in 20 years time! I bet you'll be able to get proper Jordi LaForge shit by then, and then you'll have night vision and x-ray and just be 110‰ more badass that all of us.
Beast Posted February 21, 2014 Posted February 21, 2014 I can totally understand why things like suicide would be going through your mind right now. However, there are other things to consider... There are an awful lot of negatives in the things you've talked of, and they are genuinely awful, there is no escaping that. However you have been given a timeline - 20 years. My perspective is that humans in general spend vast amounts of time procrastinating, putting off today what can be done tomorrow and generally not doing the fun things or taking the chances they should - instead sitting around doing meaningless things and essentially wasting good time. If someone gave me a timeline for disaster - for example stating that I would only live another 5 months, I would fill every minute of that with things I wanted to do. However most people don't get that, instead they live day to day thinking there's all the time in the world, that is what leads to many people never doing the things they want as they believe those things can be done tomorrow, but what if tomorrow never comes? I could get knocked over by a car today and as I lay there dying I would probably think - 'Shit, shouldn't have done that overtime recently; probably would have been better to take that holiday; would have been better to make time to see that person; shouldn't have put off that important night out...' etc. You have been given a timeline for disaster, which is an awful thing and must weigh greatly on your mind. However at least you know what time you have left with your sight and can plan. If I was you, I wouldn't kill myself. However the other bit about working, I'd definitely do less of that. I would make a list of all the things you want to see and do and start doing them. Don't sit drowning your sorrows with cider, sit and plan. Fill the time you have left with your sight with truly positive things that you feel you must do. So if and when it is gone, you have as few regrets as possible and you can say you have had a life well lived! I do agree with Zechs on this one, @jayseven. I know it's easier to say than do and I understand and feel for you about your condition and your situation, I really do, but what Zechs has said is the way I'd behave. I'd say work to earn more money but take it easy as well. However, I'm well aware that this is your life and not mine and this isn't me telling you what to do, it's just me telling you what I'd do so please don't be angry with me! I do feel for you, buddy, but you said there may be a cure so whatever you do, don't give up! ===== My twitches started coming back a little last night. I don't know whether I told you guys but I've not twitched for the past week and personally, I think it's because I've been working out. However, things has started stressing me out such as people and situations and whatnot and I had a bit of an episode last night. It makes me upset. During an involuntary twitch, I kind of moved a bit too fast, I think, and hurt my neck. It's better than what it was last night but it hurt like a bitch yesterday.
MoogleViper Posted February 21, 2014 Posted February 21, 2014 @jayseven have you seen the recent articles about the new Google smartphone and how they will be able to use it to help blind people in the future? Think of what we'll have invented technologically in 20 years time! I bet you'll be able to get proper Jordi LaForge shit by then, and then you'll have night vision and x-ray and just be 110‰ more badass that all of us. And he'll glow in the dark. Latest article that I think bob is talking about: http://www.bbc.co.uk/news/technology-26284210
Dannyboy-the-Dane Posted February 21, 2014 Posted February 21, 2014 I can't seem to find anything useful to contribute. Hugs to everyone!
jayseven Posted February 24, 2014 Posted February 24, 2014 Thanks to the replies guys. I needed to vent, and I really do appreciate that people had opinions to offer. All of which were valid, and taken on board. Was a tough few days, but I managed to drink it out of my system (alone and also with a work friday night out), and have a great talk with my girlfriend and my dad as well, whose perspective on the matter counts the most as he understands it the most. Also I did actually start some 'self-improvement' things; last weekend a friend left me a couple of URLs to sites teaching coding. Saturday I was too hungover to go outside or watch stuff, and I had the tab open. So basically I've been learning python and html and stuff and realising holy hell this makes sense, I can learn stuff. Whether I'll follow through and develop this skill thoroughly or not is still up in the air but it was nice to be back at work today knowing that I was productive and somewhat still able to alter my future. I also walked past two guide dogs being trained on teh way to work. More signs. So to sum up; I took on board what everyone said, but I can't sit and plan my future. It goes against who I am and would just lead to failures. I have rediscovered my optimism and faith in my own ability, and that will do. For now. Give it a few months and I'll be down again. But yeah - thanks for the messages guys. Sorry I've not replied directly to any posts.
nightwolf Posted February 25, 2014 Posted February 25, 2014 But yeah - thanks for the messages guys. Sorry I've not replied directly to any posts. Don't worry about it! You silly goose. Was the site codecademy by any chance? Recently came across this little site myself and its brilliant. My 'bad stuff' doesn't in any way compare to Jay's. But I've been feeling a little sad about leaving my current job. Bare in mind, I'm thrilled to have my new place, it means better hours, more pay and a smaller team. But its not gaming, its not what I've spent since High School working towards. I felt a little first world problems, but I'm doing what I have to do, rather than what I've wanted to do because this job has forced my hand due to my mental health. That sucks.
Charlie Posted February 26, 2014 Posted February 26, 2014 I'm meant to be going up north for a few days with my girlfriend and 3 others in a campervan in 2 weeks time. However, my start date in the new job has been pushed back by a week to the 10th. This means that I would work for a week and then disappear for 4 days (I was planning on all 5 if I didn't move jobs). The agency think that it's unlikely that the new job will like this and I can see why. It didn't come up in the interview and I decided against telling them myself until I started. Now there's only a week between starting and holiday it looks like I may need to cancel. I told the agency that if needed I could cut it down to just 2 days - not ideal but better than nothing. If they don't like this I'll just have to cancel, give my girlfriend back her money as she probably wouldn't want to go without me and then cover the costs of the fuel for 4 days for the both of us.
Ellmeister Posted February 26, 2014 Posted February 26, 2014 What is your new job? What happened to Sachs?
Josh64 Posted February 26, 2014 Posted February 26, 2014 Was told just two weeks ago that my Auntie has cancer. She's already on lots of medication so they couldn't do the tests right away so we didn't know quite how bad it was. Turns out it was worse than we thought as she died on Sunday It was really unexpected and still feels pretty surreal. Last month I was talking with her at my nans and everything was fine, we didn't even know she had cancer. A month later and this has happened. Crazy. It didn't really sink in to start with. It still feels a bit surreal now.
MoogleViper Posted March 1, 2014 Posted March 1, 2014 Looking for an old photo of me, stumbled across a beach photo when I was 3 stone lighter.
bob Posted March 2, 2014 Posted March 2, 2014 Wow you look a lot like Dawson in that photo. Sorry to hear that Josh, that's awful. Must be such a shock to go through all of that in just two weeks...
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