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Post by darthoso on Jan 27, 2018 17:25:48 GMT -5
Hi, can you elaborate on that last part a bit? You have SMA right? I am also SMA, type 2, and have lived more or less independently since I was 19. I have always had helpers, but sometimes for only an hour a day. Its totally possible, is what Im saying Wouldn't this vary widely from person to person? For some folks I've gotten to know, I couldn't imagine them safely having even one hour totally alone. Depends mostly on what resources are available (government and personal), how well you can advocate access to those resources, how best to leverage those resources vs need. My best resource in college was my parents owning my apartment unit, that let me offer "free rent" in exchange for helping me. That plus government resources let me build a 24/7 setup, even in a shitty state. Definitely isn't easy, but isn't impossible. Unfortunately a lot depends on stars aligning and keeping them aligned.
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Post by Corey on Jan 27, 2018 22:16:25 GMT -5
Wouldn't this vary widely from person to person? For some folks I've gotten to know, I couldn't imagine them safely having even one hour totally alone. There is a wide variation in severity among SMA types. With respect to needing 24/7 care, yes, among type IIs it will depend. Some will need 24/7, a couple will need only a little care. In my post I said "I am also SMA, type 2" though I think letstrythis mentioned he was type 3. I cannot imagine there are many 20something type IIIs that need around the clock care.
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Post by letstrythis on Jan 28, 2018 2:03:14 GMT -5
what I want to achieve is to move out of my current city to somewhere in Europe, maybe the Netherlands, and get an apartment in the middle of the city, be independent < this part is almost impossible because I always need someone with me. Hi, can you elaborate on that last part a bit? You have SMA right? I am also SMA, type 2, and have lived more or less independently since I was 19. I have always had helpers, but sometimes for only an hour a day. Its totally possible, is what Im saying I'm a fairly weak type 3, I can totally handle staying alone for 6 to 8 hours but not more than that, without getting too much into details, there's a lot of stuff that I can't do without help. I might've exaggerated a bit when I said it was impossible, I might be able to do it if I pushed myself harder and built systems around what I need and schedules, but who has time for that?
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napoleon
Junior Member
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Gender: Male
Dev Status: Disabled Male
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Post by napoleon on Jan 28, 2018 7:51:30 GMT -5
a plan for my life? a difficult question. I have a lot going - a solid job, savings and good friends around. If it weren't for the fact that I really don't like my job and it takes basically 12 hours of every weekday, such that my energy for most of the rest of life is fairly limited, I'd be ok. But a plan? No, I try not to think about it to be honest since the prospect of doing this for the next 40 years is depressing. But 80% of blind people are unemployed...so counting blessings and all that...
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Post by Mets on Jan 28, 2018 10:15:48 GMT -5
I might be able to do it if I pushed myself harder and built systems around what I need and schedules, but who has time for that? Many, many of the guys on this forum. Push yourself harder, you deserve that maximum level of independence that you can achieve, as do the other people that are in your life.
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Post by letstrythis on Jan 29, 2018 1:50:16 GMT -5
I might be able to do it if I pushed myself harder and built systems around what I need and schedules, but who has time for that? Many, many of the guys on this forum. Push yourself harder, you deserve that maximum level of independence that you can achieve, as do the other people that are in your life. it was a joke, of course I'm pushing myself to be more independent
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Post by letstrythis on Jan 29, 2018 1:55:25 GMT -5
a plan for my life? a difficult question. I have a lot going - a solid job, savings and good friends around. If it weren't for the fact that I really don't like my job and it takes basically 12 hours of every weekday, such that my energy for most of the rest of life is fairly limited, I'd be ok. But a plan? No, I try not to think about it to be honest since the prospect of doing this for the next 40 years is depressing. But 80% of blind people are unemployed...so counting blessings and all that... damn 12 hours that sounds like a nightmare, I hope you find a new more fulfilling job with fewer work hours.
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Post by Kela on Feb 2, 2018 1:39:15 GMT -5
I have had the same goal in life for years how I get there I don't know. I what happens afterwards I'm not sure. However my dream out of life is to be woken up next to the woman I love by 2 or 3 kids early on Christmas day.
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Post by lucretia on Feb 2, 2018 8:48:58 GMT -5
I have had the same goal in life for years how I get there I don't know. I what happens afterwards I'm not sure. However my dream out of life is to be woken up next to the woman I love by 2 or 3 kids early on Christmas day. You have to map it out, working backwards, to the very first thing you do today to move toward your goal.
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Post by Hopper on Feb 2, 2018 9:51:34 GMT -5
I've been meaning to reply to this thread for a while, but I'll be honest here.
There have been recent times where I've felt I've not had much of a life to plan for.
As I'm 25 this year, I've looked back there feels like a lot of things I've missed out on and that I've been lazy, immature and taken a lot of things for granted.
Yet on the other hand, I'm clearly capable of making enough of a good impression to find work, friendship and to be considered attractive and feel good about myself.
So I no longer wallow in self pity enough to convince myself I'll never achieve the following, instead knowing that I can. The titular 'end game'
I can and will continue to work hard.
I can and will make an effort to finally fly the nest.
I can and will push myself beyond my own silly reservations and make an effort to get my social life back on track and get onto the dating scene again.
After all, I know I'm capable now, thanks to the help of you guys.
Not only support, but the ever helpful home truths too.
After all, we need a balance.
Can't be all sushine and lollipops, if it was, we'd never learn.
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Deleted
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Post by Deleted on Feb 2, 2018 10:13:22 GMT -5
My endgame has changed so many times in my life that I have no idea where it goes now, and I’ll try to add some simple perspective to that.
Growing up with my disorder the endgame was to fit in. Did that with flying colors. Then it was to do school like everyone else does and I did that until I just stopped caring to excel at it. I wanted to coach football and I got to in school.
College was never something I wanted to do. I hate the idea of sitting in class and taking notes and doing tests and writing essays. I always have and I always will. If there was a Common Sense 101 class, I could major in that and teach the course after graduation. It’s just who I am or turned out to be. But, college allowed me the luxury to live away from home which I thought I had never or would be able to do. So that became the goal to maintain that. But since college and a divorce and some rocky relationships, I’ve reached a stagnant stage in my life. I live at home with no transportation yet I still have my independence. If I could talk to my 15 year old self he would tell me this is what I wanted. But yet at 34 I feel incomplete without a career or a family of my own. So I guess that’s the new endgame? I’ve become discouraged over the last two years trying to make that happen with limited resources and qualities to offer
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Post by britishtetra on Feb 7, 2018 20:23:50 GMT -5
If you can keep your head when all others are losing there’s.....
My endgame is simple, when I’ve written my book which will take another couple of months I intend to get it published touchwood. I’ve finally got my sore fixed, took ten years to heal so that’s done, I’m going to my army reunion in Blackpool in June. I was in 2RRF drums platoon so be nice to wear my beret again, then I intend to spend every penny I’ve got in the bank until I’ve seen as much as the world as I can. Hope my syrinx doesn’t get any higher than C1 or else I’m knackered. At the moment I’m in bed it’s freezing cold, got three blankets on, quilt, woolly hat… If I make 65 and I hope I’m broke except for my army pension I will call it quits, I know that might seem defeatist but that will be nearly 50 years as a tetraplegic, that’s enough Next Thursday I’m doing my will, I’m content in life now,
Pete
Then again I might get married, I’ve got the same accent as a peaky blinder, so I could get a part… it wouldn’t be a walk on. I nearly lost my dad last week,
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arisa
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Post by arisa on Mar 6, 2018 3:24:14 GMT -5
I always wanted to open my own consulting business and I've been making great progress towards it! That and I'm a huge cosplayer and gamer, definitely doing more of that!! And I guess find the love of my life and marry? XD
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Post by Hopper on Mar 6, 2018 4:08:39 GMT -5
Sounds like a good plan. A solid mixture of work and play. What kind of games do you like?
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Post by Deleted on Mar 6, 2018 5:48:25 GMT -5
Sounds like a good plan. A solid mixture of work and play. What kind of games do you like? I want a job where playing is my work 🤷🏻♂️
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