Life has less meaning without work, but most work would make me sick

Life has less meaning without work
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I would try questioning whether this is really true. I don't agree that it is, but it might also depend on your definition of work.

Hoopoe said:
I'm still dreaming of high education and doing something useful for society but I'll probably have to accept that there are too many obstacles in the way.
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Do you need high education to do something useful for society? Again, I would argue no.

Sounds to me like you have a lot of ambition and high expectations of yourself. And probably also have the potential, were it not for ME/CFS. That oviously really sucks but I would say be kind to yourself.

Spend the 2 hours of productivity you have on improving yourself (learning) and/or doing some kind of job that seems meaningful. To me it sounds like you're already doing most of those. Looking for a part-time job. Being here on this forum. Taking driving lessons. Thinking about finishing high school education.

Then if a treatment appears one day you'll have the best foundation to further chase your ambitions.

You could also look into volunteering. Those jobs might be more flexible, less competitive and quite meaningful.

Edit: but most importantly spend time with your loved ones and do whatever brings you joy / quality of life.
 
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Wits_End said:
Medical translation is something which should only be taken on by the very experienced: it is not an easy job - and cannot safely be done by AI, as it's a question of liability. Mind you, if you wanted to do that I could probably find you some starting points ...
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Also, I don't know about other countries but here you need qualifications to become a medical translator (or any kind of specialized translator). I think this means a university degree in that language + additional specialized training and an exam at the end. This may vary in other countries but probably there are some requirements in most countries.

Edit: I think you can also become a medical translator if you are a doctor and then do additional training as a translator. (At least here.)
 
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Also, while we're piling on the advice! A job of some kind, whether paid or voluntary, and especially your first job, might not provide you with everything that you're looking for - such as interesting work plus the opportunity to be with people of your own age, or to be part of a team. You can maybe look elsewhere for a social life, while you're building yourself up at work and taking your first steps into that world.

You're at the starting point of a process, and it would probably be helpful to keep in mind not letting the perfect be the enemy of the good.
 
I don't know if I should try to find out what I like, get good at it and transform it into a job (most likely a small one).

Or if I should aim for few hours per week but relatively high pay and express creativity and find satisfaction in hobbies.

I have some financial support, and survival is not an immediate concern although I need an income to improve my quality of life beyond surviving.

I'm blessed and cursed with a desire to create something new, to find profound meaning, to make a difference in the world. I say cursed because maybe it would be better if I could live a quiet life and not be so inclined to have what might be unrealistically high and vague ambitions. That energy must be expressed or it turns inward and becomes a source of suffering, but at the same time I'm fragile and susceptible to overdoing things, and becoming temporarily very disappointed when things turn out to be harder than expected. Blessed because if this creative energy can be used properly it would be a source of strength.
 
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In the US, we have certified in-person translators for the court system and on-call medical translators but probably that's via phone access, so no need to be in-person. I don't know how much education one needs, you'd have to check.

Could you see what your local/regional government offers for volunteers in their offices? Or if it's a creative tack, could you pair something to do with art and those kids or adults who have structured art class as a form of therapy, that is if you like art. Outsider art is very big in galleries here.

What kind of creativity interests you, I wonder.

My advice is to entertain all possibilities--this is a process of trying to unite an interest with social activity but tempered with the reality of your illness' limits. I know that's very hard to do.

Trial by error, as tolerated, but don't get discouraged. The trick is to appreciate yourself, be in awe of your tenacity, your survival and the persistence of your dreams. Life is constantly changing. You never know what's around the corner.

You're already a translator: you have to interpret the world through the reality of your illness daily, hourly.
 
In the US, a high school diploma is essential for a lot of jobs. I went to college early and skipped two years of high school, but I found I needed the diploma and I took an exam for it.

Just like getting your driver's license, do you think catching up with life by getting the diploma somehow (by exam I hope) would be a good idea, just in case an employer requires that?

I like taking concrete steps to try to catch up a bit with your peers, in order to feel more that you fit in.

What do you think?
 
shak8 said:
I like taking concrete steps to try to catch up a bit with your peers, in order to feel more that you fit in.
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This is what I've been trying to do for the last few years. First, working on my physical strength and endurance. Then dealing with the affective deprivation and working on my social skills. The driver' license. Trying to continuously do new things, visit new places and discover my limits.

Now the topic of work/education has come up and it first triggered a period where I just gave up due to becoming exhausted from excitement and difficulty. But I have to find some way to make progress, or reach an understanding that I'm too limited and make peace with that.
 
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I'm still going to the service for autistic adults but it doesn't offer much besides some social activities and psychotherapy. I feel like I need more concrete guidance that allows me to understand my limitations and strengths, techniques to manage my specific problems (like pacing for PEM, but for all my other problems), and a path that leads towards a better life. Most systems and the usual paths proposed by society are made for people with different bodies and minds and don't work well. Trying to fit into these systems has only led to repeated failures. If I could understand what would work well for me, I would have a chance to make some more progress.
 
Responding to a member's now deleted post about how they decided to work on a problem, and how that meant that other life decisions flowed from that.


It's a good story. Thanks for sharing. I wonder how your story will unfold.

I know what you mean. I can only really work on something when it excites me.

I haven't found something that excites me in a while and have difficulty transforming these interests in concrete projects and actions. Due to the illness I've been unable to do and achieve anything and lived in my own mind and fantasy. This was maybe even good for developing creativity but if the creativity isn't matched by the ability to turn it into real things, then it's just fantasizing. It's like training one aspect of the mind while totally neglecting another.

I miss a goal in my life that merits the effort. Little, unimportant things don't.
 
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Just wanted to tell you @Hoopoe that I found the work world a pain in the b***.

Expanding your self-concept toward a career-type of activity is something you may have missed out on in your teens and twenties. I don't think recapturing lost years is possible, but fashioning some sort of substitute now is a good venture.

Things that interest you...are the direction to go, in my opinion. Having a realistic outline of exactly what your functional capabilities are on an average day to bad day is essential in order to match up with any sort of activity. Also, additionally using your autism comfort zone to screen in/out certain endeavors or actiivities.

What a psychiatrist said to me that helped me adjust to being disabled and not able to work (more than 5 hrs per week--not enough to live on), he said, "if your body won't let you work, then you can't work."

Finally accepted that I can't work. But then I did have some energy available and took one class per semester at the local uni in a subject that interested me. Whatever makes you lose yourself in an acitivity for an hour---it doesn't matter what it is---it's just something that has always interested you, or is new information. Whatever does the trick.

We compare ourselves to others when we brush up close against them, such as when you witnessed the paramedics heroic rescue of the allergy victim, perhaps?. It may have activated the desire to do something big. (Just a guess here.)

The social worker on the Bateman support groups said not to compare your life to those who don't have disabilities.
If you find yourself on a comparison jaunt, compare yourself to someone who has not only ME, but also is on the spectrum. Then the one-down feeling will vanish.

Can you afford to buy one coffee at a cafe and work there on your computer. Would that help the social deficit without being overwhelming? Use noise protection.

On a bad symptom day if I'm walking around the block, my contribution to society is smiling at passers-by. Or, if I don't make Hispanic men uncomfortable (a blond woman like me is considered "una princesa" in their culture due to economic and social inequality in Mexico) I will pick up some littter. Or make eye contact with a homeless person and say hello and listen to their response.

I fantasize about volunteering at a local bird rescue center or a cat shelter. But even those activities sound more fun than they'd actually turn out to be.

We fantasize about what we desire, but in reality those things are pretty flimsy.

Being okay with what you have now in your life seems very foundational to taking careful steps forward.
 
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shak8 said:
Expanding your self-concept toward a career-type of activity is something you may have missed out on in your teens and twenties. I don't think recapturing lost years is possible, but fashioning some sort of substitute now is a good venture.

Things that interest you...are the direction to go, in my opinion. Having a realistic outline of exactly what your functional capabilities are on an average day to bad day is essential in order to match up with any sort of activity. Also, additionally using your autism comfort zone to screen in/out certain endeavors or actiivities.
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You're right. On good days I overestimate how much I can do. I already crashed this spring from doing too much.

I feel like I have no choice to try anyway... there's some financial support from my family but I can't expect any from the state. I'm not sure that I could be genuinely happy living my life just managing my illness and maintaining quality of life. I would like to do something useful and interesting, find love, have hobby and friends, maybe earn enough to live indipendently with a partner.
 
Hoopoe said:
I liked programming because it rewards being thoughtful and precise and allowed me to build things and be creative.
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If you like programming there is the possibility to contribute to open-source software projects. It's not a job but it might be a way to feel one is contributing in an important way to outside society. There are many of us free software enthusiasts who think it's an very important thing for humanity and freedom in general. There are all kinds of projects in all kinds of domains. Some projects have online social events for the regular contributors, for example this.

Depending on how much mental fatigue you have it might be hard to learn a new project and new tools, though.

I work as a software developer 25 % of full time from home. It works because I already know the job and the environment. I wouldn't be able to learn software development with my current health.

If you're interested I'd be happy to give more tips and answer questions either in this thread or in DM:s.
 
Hoopoe said:
Are there any interesting things you're working on?
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Maybe a little bit interesting? We build a system that is used by a hospital using Java and a database called YottaDB, which uses a database language called Mumps (I know, it's weird). I mainly do small things like scripting and server maintenance since my energy level has gotten lower.

When I had my health I did some open source contributions for the Eclipse IDE. That was fun but much too demanding for my current energy level.
 
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I never had much interest in math, perhaps because it was taught to me with no focus on real applications. When I started programming math became a useful tool, and it also became more important to be able to communicate and understand others.

I don't particularly like math per se, but math can also be solving small puzzles or describing things, which can be enjoyable.
 
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